Highway Pasque

World Autism Awareness Day

2013-04-02T12:22:00.001-04:00

I think of this blog almost daily and want to write, but I'm overwhelmed by the 9 months that have passed since my last entry, and my inability to ever catch up. But today, I am inspired.

Facebook is abuzz with autism awareness today. (One post I saw said, Everyday is autism awareness day in my house!) I'm writing this, my personal story to share with my friends, to demonstrate why autism awareness is really so important.

I'll start with a story about Annie. When Annie was diagnosed with type I diabetes (coincidentally, 1 year ago today), she was admitted to the hospital to undergo a strictly prescribed treatment and so that we, her parents, could undergo an intensive education program. She was given a backpack by the Juvenile Diabetes Research Foundation with a teddy bear to practice giving injections. We were given a stack of informational books. She got 2 free blood glucose testing meters and 2 free injection pens. We left the hospital with a bag of medical supplies and went to the pharmacy and filled prescriptions for more. No copay. A pediatric diabetes nurse called us every day to check in, and we had a phone number to contact the on-call physician, 24/7, that we used several times when we had questions. We went to 2 diabetes education classes, an insulin pump class, we saw nutritionists, physicians, and social workers. We pay a $20 co-pay each time we see her endocrinologist (every 3 months) and I have to pay for her urine ketone strips out of pocket. They cost about $11 for a 6-month supply. When she is ready for an insulin pump, it will be covered.

During Annie's first week of kindergarten, a teaching assistant, shared between 2 kindergarten classrooms, was in charge of checking Annie's blood sugar and giving her insulin. After she had 2 episodes of very low blood sugars, her school decided that she needed someone to be with her 1-to-1 to ensure her safety and in order to keep her diabetes from disrupting her education. Within another 2 weeks, the school hired a TA who is now in the classroom, lunchroom, on field trips, wherever she is, the whole time she is in school.

Contrast THAT with THIS:

When Lively was diagnosed with Autism Spectrum Disorder, we were sent home with a book: the First 100 Days of Autism. We were encouraged to enroll in a study through University of Michigan. It was suggested that we get Lively additional speech therapy and occupational therapy. We quickly found out that although our insurance allotted him 60 visits of speech therapy a year, it did NOT cover speech therapy in the case of autism or if services were offered through the school district. He was receiving speech therapy already through the district, through Early On, from a therapist who could not understand him, relate to him, or help him. We had no other options. ABA therapy (Applied Behavioral Analysis), the only intervention that has been scientifically proven to improve functionality, communication, and cognition in autistic children, was not covered by insurance, and costs $36,000/year for 15 hours/week. Speech therapy, through University of Michigan, costs $250/session. We found that we could get Lively some additional help, including his intensive feeding program, and some speech therapy, by enrolling him in Children's Special Health Care Services, a Medicaid insurance policy for which he qualifies due to his perinatal stroke and mild cerebral palsy. This costs us $250/month, and we still had to pay for Lively's intake appointments at the feeding program ($900) and well over $1000 in travel expenses.

Annie's diabetes qualifies her for CSHCS as well, but ALL of her healthcare has been covered so far, so we have not enrolled her.

Thankfully, as the Affordable Health Care Act has taken effect, we are seeing some changes. Although Lively has qualified for autism services through this new law since October 2012, we have not actually been able to receive ANY services yet. Hopefully, he will start ABA in May or June, and instead of over $3000/month, it should only cost us $400. It's not chump change, but thankfully, we can make it happen. We will continue to pay $360/month for speech therapy, because we have found a wonderful therapist who is really making a difference for him. Although speech therapy services are supposed to be covered for him now per Obama-care, they are not, in fact, covered yet. With his CSHCS premium, that brings us to a whopping $1010 per month to pay for Lively's autism. And this is for a family that knows it's way around the healthcare system, AND it's with new laws that "cover" autism services. How many families really have this kind of money?

(A quick mention here about my guilt in having to work as many hours a week as I do, and how tired I am when I get home, and how I let my kids watch too much television because we're all too exhausted to do anything else at the end of the day. Perhaps I could afford to work less and spend more quality time with my family if over $12,000/year of my income weren't going to pay for services that are supposed to be covered by insurance.)

Lively attends a special preschool with a program to help autistic children learn to communicate. In 1.5 years, he will be eligible for kindergarten. I have started looking into this, but the process is so overwhelming, mysterious, and anxiety-provoking, I can't think about it for longer than a few minutes before I have to give myself a break. Special Education services are constantly changing in the school district, and largely due to a huge budget deficit, none of these changes are for the good. I'm not sure what he will need, and I'm really not sure what services will be made available to him. Let's just say, there is NO chance that he will be quickly offered a 1-to-1 teaching assistant to guide him through his day. My guess is, we may see an increase in that $1000+/month to supplement services and hopefully get him in a position to be able to participate in a general education kindergarten class.

And so, friends, I hope this has convinced you of the need for more autism awareness. Spread the word.

To my sweetest boy on his third birthday:

2012-07-15T22:07:00.004-04:00

Dear Lively,

You are 3 today!

What a year we have had. I had hoped to chronicle it more thoroughly throughout the year, but we, as a family, are worn out. Instead, I will summarize your year here and now.

You started school! You started at the same preschool Annie attends in September. Here you both are on the first day of school.

I am amazed at how much smaller you both look; when I remember this day, it seems like it could have been last week. For the first month, Daddy and I were worried sick when we picked you up and found you right where we had left you, sitting by the front door of the classroom and twirling the propeller on the toy plane. But then you made friends! Your class is full of sweet little 2-year-olds who love you, and I think that you have learned a lot from them about how to play, how to communicate, how to be part of a group. Things aren't easy for you, and I know this, and it breaks my heart each time I understand it a little more. But you are happy there, and I am happy for you.

You continued with unbelievable amounts of therapy and interventions throughout the year. These included:

Early On, 2 times per week
An intervention study through University of Michigan, once per week through December, and 3-4 times per week beginning in January
Occupational therapy, intermittent
Speech therapy, once per week
Intensive Feeding Program, daily, for the last 7 weeks, with 1 week to go

The accumulation of all of these appointments (as well as Annie's new diabetes and all that entails) is what has made our family so tired. But I will save those stories for another day.

Things you love:

1. Elmo. You have loved Elmo for a long time, as did your sister before you. I can't really remember how it all started, but I suspect it was with an episode of Elmo's World. You dressed as Elmo for Halloween (Annie's old costume), and at this point, you require Elmo's World to nap at home or to go to sleep at night. Because you are still at the feeding program in Grand Rapids, Daddy and I often have to use Elmo to occupy you so that we can have a meeting with one of your providers, or make a phone call, or go to the bathroom. So you are addicted to Elmo. I suppose there could be worse things.

2. Signing Times. This is the only other show you really watch, and I continue to be impressed with how many signs you know. You also love the songs and watching Rachel teach the signs, and I think it's great.

3. Car race, aka Cars, the movie. This is a fairly new development, since starting the program in Grand Rapids. You could watch both Cars and Cars 2 multiple times a day. We gave you a "car race" racetrack for you birthday today, and it was a big hit with you and Annie both.

4. Annie.

You love Annie so much you don't quite know what to do. Sometimes you are so excited to see her that it overwhelms you and you sort of lash out and hit her. (She does not appreciate this.) You kiss her and say "sorry Annie" when she is sad, even if you did the thing that has made her sad. You want to be with her and play with her all the time, but often you express this by running through whatever she is playing with and knocking it down, or destroying something she is drawing. You miss her when you are away from her, and you are delighted to see her when you are reunited. (She is delighted to see you too, although sometimes she tries to hide it.) You share a room with Annie, and you won't fall asleep until you can see her in her bed.

5. Your bike. We gave you a bike for your second birthday, which you have completely outgrown but won't let go. You have a bigger bike we are trying to encourage you to adopt, and although you like it, you LOVE your first bike, despite the fact that your knees almost drag the ground when you ride it. I suspect that when you switch to the big boy bike, you will fall equally as in love with it.

6. Daddy. Daddy has been your parent of choice for about the last year. You started having a lot of one-on-one time with Daddy last summer because his work schedule allowed him to be with you for the majority of your appointments through the research study at U of M. I feel sad knowing that my job responsibilities have taken me away from you, and from Annie and Daddy too.

7. The park. You love to slide! To swing! To climb! To jump off tall things and land in the grass! And every single time I see you do these things, I remember that there was a time that we didn't know if you would ever be able to walk.

8. Lion. Lion is a new friend -- you appropriated him from Annie's no-longer-wanted toys. You and Lion have been inseparable since we've been in Grand Rapids.

9. Screaming! You have an ear-piercing scream that you use mostly to express joy and excitement, and occasionally frustration and fear. Usually I hear this sound and know that you are happy. But this scream, if released in public, draws angry and judgmental looks from people in the vicinity, and sometimes rude and hurtful comments. I love your unbridled joy. I am disgusted at how intolerant others are of it.

You have been so busy this last year, and you have learned so much. I desperately want the world to be an easier place for you, but so far you are living in it happily. May you continue to be so happy my darling boy. It is what I want the most for you, for Annie, for all of us.

I love you with my whole heart,

Mama

First, some updates

2012-05-29T22:22:00.000-04:00

I'm writing from Grand Rapids at the end of Lively's first day at the Intensive Feeding Program. More on that in a post I'm planning to write after this one. We've been beyond busy the last few months (in fun ways as well as some not-as-fun ways), so let's get up to speed before the feeding program takes over this blog for the next 2 months.

We dedicated April and May to diabetes. My amazing department at work (and the most understanding, generous, and downright lovely coworkers) allowed me to take some time away to take care of Annie. I had a few overnight calls which were mostly covered for me by partners from my group who was on call the same nights (thank you, thank you, thank you!), and I continued to see patients one day a week for breastfeeding. Overall, my partners picked up much of my clinic time so that I could be with Annie, and I will always be grateful for their willingness to help me.

Pete's mother and sister were able to come with me to the hospital-led diabetes teaching classes, both for moral support, and to learn about counting carbohydrates, giving insulin, diabetes emergencies . . . it was basically a type I diabetes crash course. I was able to teach Annie's preschool teachers and other school staff members about diabetes and how to take care of Annie. She is so young to have this diagnosis that the preschool hasn't had another diabetic kid in years, but the school staff were absolutely amazing in their willingness to learn about this with us. After a several weeks, Annie was able to go back to school for full days without needing me to come for meals, snacks, or blood sugar checks, and I think everyone is pretty comfortable now. Pete and I stay available by phone when Annie is at school, and her teachers call often with questions, which is exactly what I want them to do.

So our diabetes routine is coming together. Weekdays are structured, so I pack her meals and snacks and send them with her to school, and I pre-calculate her insulin dose, because for better or for worse, I don't trust anyone to do the math but me. One day I'll have to let that go, but that day is not coming anytime soon. Weekends are tough. We've been trying to do some fun family and friend things, but the unstructuredness of it, and the inability to stay on top of Annie's activity level and diet make me really nervous. Annie can drop her blood sugar really low, really fast, just by running around outside, chasing Lively or riding bikes or playing at the park, so I have to check her blood sugar before and after any kind of exercise, and sometimes in the middle as well if she's out more than 30 minutes or so.

Example: the first Sunday in May is the Water Hill Music Festival in our neighborhood (2nd annual this year!) Any household can sign up for a particular time to play music on the front porch or yard, and no one needs a permit because it's legal to play on your porch. There is a schedule and hundreds of people wandering around the neighborhood drop by at the scheduled time and listen and dance and sing along. Pete and I think this is a really cool perk of living where we do, so we wanted to participate this year. Some friends with actual musical talent came over and played fun sing-along kid and kid-at-heart songs, and we put out lots of musical instruments and various things to shake or bang or blow into, and a bunch of friends showed up as well as tons of people we didn't know. The kids loved it, the day was beautiful and everyone stayed outside and it was great. Except that I was so worried about what/when Annie was eating and how much she was running around that I was on edge the whole time and couldn't relax and enjoy myself. I find myself feeling that way a lot on the weekends, so much so that sometimes I feel like the week is easier, which is a terrible and stupid way to live.

Here's a photo of Lively at the music festival. It really was fun. Feel free to come by next year, and hopefully I'll have my head on straight by then.

Despite his adorableness in this photo, Lively was pretty overwhelmed by so many people and the loud music, but he held it together as best he could.

In other Annie updates, she is generally feeling a lot better now that her body can actually get energy from the food she eats instead of allowing glucose to build to toxic levels in her blood while the rest of her cells starve! She gained 4 pounds in the first 3 weeks on insulin (she had lost weight and was way too skinny prior), and for all you medical people out there, her hemoglobin A1c, which started at 11% (!!!) was down to 8.7 after 3 weeks. We're shooting for 7-8% at next check, and 7% after she turns 5 at the end of the summer.

Annie had her second ballet recital this month, and I sat 3 rows back with tears streaming down my cheeks the whole time she was on stage. We weren't allowed to take pictures during the performance, but here's one I like from the rehearsal the week before.

We really try to avoid the princess thing as much as we can at home, so of course Annie was overjoyed to be able to dress in a lavender tutu with tiara and diamond necklace. The day before her recital, her class at school had a come-dressed-as-a-princess, knight, or dragon-day, and I could not convince her to dress as a dragon, so we went with this:

I tried to convince her to let me put green makeup on her to be Princess Fiona from Shrek, but she would not have it. She couldn't stop looking at herself in the mirror, spinning around, and saying, "I look so beautiful Mama!" And she did. She was so happy!

Annie is doing very well with the blood sugar checks (she's able to do it herself, with just a little instruction from us now) and all the shots, but she's having a hard time too. Her diabetes rebellion is manifesting itself in temper tantrums that take us by surprise completely, and a basic refusal to do anything I ask her to do. I suppose this isn't surprising. Unfortunately, her difficulties adjusting to diabetes combined with my overwhelming stress are not working well together. I am having a lot of trouble staying calm and not yelling, and many days I fail miserably. This of course, leads to more guilt and stress about not being the mother I want to be for her, which continues the vicious cycle of depleting my emotional reserves so that I am perhaps even more likely to blow up at her the next time she acts out. Bad, bad, bad. I have stopped waiting on the front porch for our mailman to deliver my mother-of-the-year award. It's not coming.

So ok, lots of stuff has been happening with Lively too, but I just can't go on anymore tonight, so instead I'm going to insert this picture of him learning how to balance on his big boy bike. Most days he insists on the toddler bike we got him last summer, even though his knees are close to scraping the ground, but he's getting more interested in this bike, and I'm so very proud of him. When I see him do this, I can't help but remember that 15 months ago, we weren't sure if he would ever walk.

Tomorrow I plan to update with accounts of Lively's first 2 days in Grand Rapids. Right now he looks like this, which is a very good thing:

Here's hoping that I will find a way to fall asleep sometime tonight as well.

Highway Lively Becomes Highway Pasque

2012-04-12T21:55:00.000-04:00

I've been a little worried about Annie for awhile. In the last few months, when friends asked me about her, I said she's fine. And she was, for the most part. But a few things were bothering me.

She hasn't been having a great year at school. Her last 2 years at the same school were wonderful, and she woke up excited to go every morning. Lately she's been telling me that she wants to stay home.
She's really skinny. She's growing in height rapidly, but she seems to be getting skinnier. Her pants that fit her waist are much too short, and the ones that are long enough fall down because she's a waif. Perhaps that is because . . .
She hasn't been eating well. Many nights it was a struggle to get her to eat even a few bites of her dinner. I chalked it up to 4-year-old picky eating.
She's pale, and has dark circles under her eyes that look like bruises. This crept up so slowly that it's only now and looking back that I can see the change in her.
Her general mood has been different. She's been irritable, and fussy. Sometimes she's over-the-top hyper and can't calm herself enough to put on her pajamas.
She started having accidents again at nap time. She had been dry for many months, and lately I've been putting her in a pull-up again.
A few months ago, she was dry a couple nights per week. She still wore a pull-up to bed, and more than half the time it would be wet in the morning. But the last couple months, she's been waking up with a soaked pull-up, drenched pajamas, and wet sheets.
Three or four weeks ago, she started drinking water like crazy. We went on a 5-hour trip in the car, and she drank 5 or 6 cups of water. We, of course, stopped every 45 hours for her to go to the bathroom.
She got a rash that wouldn't heal after several weeks. At first it came and went, and then it came and stayed and worsened.

These things happened so slowly, over many months, that it took me awhile to realize they weren't just phases she was going through. And then last Monday, it hit me and I just knew what was going on with her. We took her to the doctor on Tuesday, and it turns out that I was right.

Annie has type I diabetes.

Here's a picture of Annie in the Emergency Department after her visit with her pediatrician.

She was admitted and we stayed for 3 days. They sent her home with her blood sugars still in the 400s persistently. Here she is in one of the Child Life rooms in the hospital.

This is the insulin-requiring diabetes. It cannot be controlled with diet and exercise. Her pancreas stopped making insulin, and her body cannot turn her food into energy without insulin, so we now give it to her in shot form 4 to 6 times per day. There is no other treatment at this time, and unless one is developed, she will need insulin injected in some fashion for the rest of her life.

We prick her finger to check her blood sugar at least 5 times per day. One of those times is at 3 am. If her blood sugar is low during the night, I might check her several times.

I'm reeling. Pete is too, although he's confident that everything will be fine, so he's holding it together a bit more than I am. Annie is fine, for the most part. She keeps a book and puts check marks every time she gets a shot, a finger poke, or some other medicine, and making these check marks is great motivation for her right now. She sets up her glucometer, and puts her little drop of blood on the strip that reads her blood sugar. She chooses which finger to poke, and where to inject her insulin each time.

I felt like we were barely getting by with everything Lively needs and now this. I'm not sure how to find enough hours in the day to take care of my children anymore. And I'm not sure why this is happening to my family. I can't believe there's a reason behind it.

Big L's updates

2012-02-16T01:28:00.000-05:00

There are many updates, and once again, I've waited so long to update the blog that it has become an almost unmanageable task. Here is what has happened, in a nutshell.

1. Feeding program

On December 1, we finally made it to the Intensive Feeding Program at Helen Devos Children's Hospital in Grand Rapids for the long-awaited eating evaluation. (See previous Dear Doc entry.) They were great. First of all, they were appalled at how long it took us to be seen there, and demanded to know who I had talked to that had been so rude on the phone with me (read: made me cry) so that they could address the issue. It should have taken only 2 to 4 weeks to be evaluated from the time the referral was made. It took us a year.

I was very impressed with the facilities. Finally, a place that is set up for special needs kids! The waiting area was full of toys, comfy-ish chairs for families, big-screen TV, train table, play kitchens, lots of windows and light. When it was our turn to be assessed (a 3 hour process), we went to a smaller room that was set up like a kitchen. There were 2 large 2-way mirrors on the walls, and after the team members introduced themselves (social worker, neurodevelopmental specialist, psychologist, occupational therapist, nurse practitioner, and there are more we didn't meet), only 1 or 2 came in at a time to interact with Lively so that they didn't overwhelm him. The rest watched behind the mirrors. It worked so much better that other assessments during which he has been bombarded by multiple strangers at once. Lively was also really tired, had skipped his nap on the 2 hour drive from Ann Arbor, but he managed to hang in there and complete the evaluation.

The pediatrician did a full physical, and she remarked when she was moving his feet around that he was "loosey goosey." When she tested his reflexes, he was hyperreflexive in his left arm and leg. I've seen that test performed on him many times, and this was a new response. The OT pointed out that when Lively chews, he isn't really using the muscles in the left side of his mouth in a coordinated way.

After 2 hours of testing, they spent almost another hour going over what they had noticed about Lively and what they suggested for him.

(Here's a video of one of the first times Lively was able to spear little pieces of Boca chicken nuggets with his fork and dip them in barbecue sauce. It was a proud moment!):

2. Cerebral Palsy

The bottom line is that Lively has cerebral palsy, and it is causing his eating problems.

Lively is not quite ready for snowboarding yet

We knew about the possibility of CP for Lively since he was diagnosed with his stroke. He has always had some left-sided weakness, but he has compensated well, and unless you're looking for it, you probably wouldn't be able to tell by watching him. But he does have a much more immature grasp with his left hand, and he's certainly not good at manipulating small objects on the left, but he can pick up things, turn on the lights, stabilize a bowl so he can feed himself with the right hand. His left leg has always been a little unsteady, but he walks well, and he runs. He can jump, and he can squat down and stand back up without falling over. When he runs, he has a funny gait, and he does a funny posturing thing with his left hand and arm, but if you saw it, you would probably just think he has an adorable little quirky run.

Evidently, Lively's run is "classic" for CP.

This summer, Pete and I also noticed that when he rides his push-bike with his helmet on, it seems like his head is too heavy and it falls to his left side. We have known a long time that Lively can't coordinate chewing and swallowing, but it had not occurred to me that he can't eat because he has muscle weakness due to CP. I actually thought that maybe we were never going to get the official CP diagnosis because his left arm and leg work pretty well. But his chewing and swallowing aren't working well at all.

CP explains a lot though, and it's a better diagnosis than a recurrent stroke, which is what I was afraid of. A stroke at birth is not likely to reoccur, but if he had a second stroke, he would be likely to have more. So the CP diagnosis is a missing piece to the puzzle. Lively's medical history makes a little more sense to me now.

HOWEVER, I am beyond frustrated that we have seen every specialist at U of M, multiple physical, occupational, speech therapists, a neurodevelopmental pediatrician here, a neurologist, a surgeon, people who treat CP kids on a regular basis, and NO ONE HAS EVER SUGGESTED THAT THIS MIGHT BE WHY HE CAN'T EAT. I have previously had a lot of pride in this health center. I work here. I have thought of U of M as the place to go if there's something very wrong and complicated going on. But now, all I can think about are the hundreds of appointments where this not-uncommon diagnosis that unifies Lively's constellation of symptoms has been missed. U of M, you let me down.

Lively is now on the waiting list for the Grand Rapids program. Currently, the wait is over a year, but because of the run-around from the person who coordinates phone calls and appointments, the team is going to try to get Lively in closer to 6 months from now. No guarantees.

The program lasts around 8 weeks and is for 5 days a week from 8 am to 5 pm in Grand Rapids, 2 hours away. This means we're going to have to split up our family so Annie can stay in preschool or kindergarten in Ann Arbor, and so Pete and I can still work as much as possible. We don't really know how we're going to do this, but we'll find a way. We will probably have to live in the Ronald McDonald house in Grand Rapids with Lively for 2 months. I am really looking forward to improving Lively's ability to eat, but I am dreading our family having to live apart.

(Despite the CP diagnosis, he gets around very well!):

3. Speech therapy

We're focusing on Lively's communication right now. He is making quick gains in our minds, but when he is formally tested in receptive and expressive speech, the gap is widening between his abilities and those of his peers. I stopped keeping track of his words months ago, because he suddenly had so many that I couldn't keep up! Now he's starting to put 2 words together, and sometimes even more. A couple days ago he brought a toy in a box over to me and said "Help open please." He got lots of big kisses for that performance.

Lively gets speech therapy through Early On 1 or 2 times a week, although I don't actually think that therapist is helping him much. He also has a new therapist through U of M who has experience working with autistic children, and I have hope that she'll help him. I'm also attending the Hanen Program for 3 hours, 2 nights a month, which is a special program to help parents encourage speech and communication in their autistic children. I like it, and it's giving me some good ideas. But as I was sitting in the class Tuesday night, watching video examples of parents struggling to have a meaningful interaction with their autistic children, I was struck (again) that this shouldn't be so hard! I was in a room full of parents trying to learn how to play with their children, spending long nighttime hours studying how to do something that is supposed to come naturally, but that isn't. We should have been home with our families or in bed, but instead we need this instruction on how to take care of our kids. It sucks.

(Still new words everyday, like CHEESE!):

4. Autism (more)

We have been involved with a study through U of M for the last 9 months that has basically been a weekly playgroup. Pete and Lively go every Friday. The second leg of the study starts now, and it involves 2 home visits a week, 1 clinic visit a week, and 1 videotaped play session at home a week. Yes, our already booked calendar just got 4 more appointments a week. We're going to give it a try. But we're overwhelmed just thinking about it.

I met a very nice woman in the Hanen class this week who was telling me that she and her husband decided that she would stop working for the next several years so that their family could fully dedicate themselves to helping their son. Pete and I need to find a way to do that so badly, but I just don't see how we can. We rely on both of us working to get by right now, especially with the multiple extra expenses for Lively each month. But sometimes I wonder if we're all going to make it through with our sanity intact. It feels like our household is balanced so precariously, that if the wind blows just the wrong way, we're going to just fall apart.

5. Autism preschool

I think I'm going to have to get into this more later, but in short, we were told Lively could enter an intensive 5 day a week preschool program that focuses on social communication this month. We have met many families whose kids are in this program through our involvement with various other autism-related groups, and they all are so happy with how the preschool is helping their children. Lively was going to be allowed to enter early (at 2 1/2 instead of 3) because the Early On folks thought he needed more help. Now they say he has to wait until next fall. I met with the principal of the preschool this week, and we're working on trying to push our way in.

6. Annie

All of this is hard on her too. We're not able to focus on Annie, and she needs us to sometimes. Her brother hits her and pushes her all the time, for no reason she can understand (or that we can understand). And her teachers at her preschool right now just aren't as good as the ones she had the prior 2 years. I'm looking for some things that she can do that are special -- she wants to take ballet again, so I'm going to try to do that for her, and she also wants to learn how to swim, so we might try to do that too. But did you read the part above about Lively's 8 appointments each week? *Sigh*

Dear Patient with a Birth Plan:

2012-02-02T03:20:00.002-05:00

I understand that being pregnant for the first time is a new and scary experience. I understand that you are a motivated, educated woman who takes charge of your personal and professional lives. I respect that. I relate to that. And I understand that in the face of something that is new and unknown, an experience to which you may have been looking forward for many years, you have ideas of how you want things to be. You probably single handedly planned your wedding down to the last detail, paying for most of it yourself, and it all went off without a hitch. Maybe you got pregnant right away, or maybe you struggled through some months or years when you thought it might not happen for you -- but then it did, and now, here you are, getting ready to deliver your precious infant and take him/her home to a nursery outfitted with shiny new furniture, filled with carefully laundered layettes and the whitest of white new organic cloth diapers.

Throughout your pregnancy you have avoided caffeine (despite the fact that I told you it is safe to drink two 8 ounce cups of coffee each day). You have not taken Tylenol for your headaches, although I recommended that you do so. You have taken birthing classes that have focused on the risks of medicated labor and childbirth. You have downloaded and filled in a 4 page birth plan. You have planned your delivery.

You don't want an IV.

You don't want antibiotics even though you have been found to carry group B strep.

You don't want fetal monitoring.

You want your partner to deliver your baby.

You don't want an episiotomy, a vacuum extraction, or a forceps assisted delivery.

You don't want the cord clamped until it stops pulsing.

You don't want a c-section.

You don't want your baby to have erythromycin eye drops or a vitamin K shot.

You don't want your infant to have hepatitis B vaccination.

You want to breastfeed exclusively.

You probably also didn't want nausea and vomiting during your first trimester, heartburn, back pain, constipation, hemorrhoids. But you got all of those things, and you made it through just fine.

Do you know what I want? I want my 2-year-old to wear mittens when it's cold outside. Before I had children, I was absolutely sure that I would not allow my 2-year old to make a decision about mittens for himself. And now, I can pin my toddler to the floor and force mittens on him while he screams, and the second I let go of him, the mittens come off. I have no control. And that's parenthood for you.

Go ahead and give up your ideals about parenthood now. You don't get to control the labor and delivery process any more that you can control whether or not your baby will wear mittens when he is 2.

You need an IV if you are in labor. If you start to hemorrhage, I can give you medicine to stop your bleeding. I can give you blood to save your life. My anesthesia colleagues can put you to sleep if you have an IV so that I can do a procedure to stop your bleeding. If you don't have an IV, my ability to help you is limited.

Do you really want to rush your septic infant to the hospital at a few days of life for blood cultures, catheters, lumbar punctures? (I have done this with my newborn, twice, not related to group B strep, but trust me, it is terrifying and you don't want to do this.) Treat your group B strep. You have entrusted your care to me and I feel this is an important part of keeping your baby safe. I have studied and trained for over 12 years to come to this conclusion. Just take the ampicillin.

I have reviewed the literature on cord clamping. There may be some benefit in letting the cord pulse for 2 minutes after delivery. Longer than that, there is not benefit and there may be some harm. Look at the sources of your information before you make this demand. Trust me over the random baby blog you found online.

If your baby is in distress, I may recommend a c-section or an assisted vaginal delivery. I do this to protect your baby, to give you a healthy child, not to ruin your birth experience. I have a child with cerebral palsy. You will be happier if yours does not. In fact, be grateful if yours does not.

If your baby is breech, or if you are in labor for 3 days and your cervix has been dilated to 9 centimeters and your baby is facing forward and not budging, I will also recommend a c-section. I will not recommend a c-section unless I think you really need one. I am not just trying to ruin your plan -- I am actually offering to protect your health and your baby's health.

Don't even get me started on vaccinations. Just talk to your pediatrician. I just can't go there.

I am one of the biggest breastfeeding advocates you will meet. I have devoted part of my career to helping women breastfeed. If your baby loses too much weight after delivery, if he is lethargic and not able to take in enough nutrition at the breast, if your milk doesn't come in for 6 days, I may recommend that you supplement with formula. Your baby cannot learn to breastfeed if she is too weak to latch or to feed for long enough. Your baby needs nutrition to grow, to be healthy, to live. If she cannot get enough from you, she is going to have to get it somewhere else. I will try to help you with your breastfeeding difficulties, but sometimes you have to give formula, at least for a little while.

If you go into your labor and delivery with an open mind, and if your only goal is to have a safe delivery for you both, you will probably not be disappointed. Don't worry about whether or not you want an epidural now. It's a safe treatment for pain in labor, and it's available if you need it. If you don't want one, no one is going to make you have one. Get your IV, just in case. We rush women to the OR for unexpected and emergency c-sections every single day around here. Just get your IV, and maybe you won't need it, but if there's an emergency and you do need it, you are going to be very glad you have it.

Having a c-section is major surgery, It sucks. I've had 2. I didn't like them. I recovered just fine from them though, and I am no less a mother because I missed out on the unmedicated birth.

Your delivery is just one instant in the parenting of your child. For most mothers and babies, it is also the most perilous instant in their lives, which is why we have hospital births, and trained, medical birth attendants. But delivery lasts for a second, and it's over, and then you move on to the rest of parenting. And please believe me when I tell you that you will have no more control over your children later in life than you will have over the labor and delivery process. Think of labor as preparation for motherhood, and just give up control. Your baby may not wear mittens either, and there's not a damn thing you're going to be able to do about it.

A letter to Lively's class

2011-10-20T11:43:00.001-04:00

Dear parent of a healthy "normal" child in Lively's preschool class:

I understand that it is completely normal that a 2-year-old would be curious as to why his new friend at school gets some food, water, and medicine through a tube in his belly. Your child has probably never seen anything like this before, and it may seem funny, or weird, or even a little scary to him.

But you're a doctor, right? So in all your years of training, you must have learned that some people can't eat or drink everything they need with their mouths. And certainly you must want your child to grow up showing compassion and love and friendship to others, even others who may have one too many holes in their bodies. Surely you can explain these things to your child at home, and you can teach him that Lively is a happy, playful, fun, and loving little boy even if he has a small physical difference from your child.

Surely you wouldn't come into Lively's classroom, telling his teachers that your child is coming home telling stories about Lively getting fed through his stomach, and what's the deal with that anyway? And don't the other kids and parents deserve an explanation?

Oh wait. You did do that?!?! You think the class, the school, needs an explanation of what Lively has been through the last 2 years of his life?

Well, go f#@% yourself.

Sincerely,

Lively's mama

Good things

2011-10-08T00:06:00.002-04:00

So much has happened.

Lively started going to Annie's preschool September 6. I was nervous about sending him, but excited too. Pete and I really wanted him to be around other kids and hoped that he would be inspired to eat, play, and connect with some new people. So far, he's done exactly that. The first week or two, he was a little sad when we dropped him off, but now he gets excited on the way to school, walks happily down the long hall to his classroom, says "Hi!" to his teachers and friends, gives me a hug and a kiss and then pushes me out the door. He's talking a lot, mostly single words, but lots of them, so many that I can't even begin to update the list I started a couple months ago. Some of my favorites:

"Hi yogurt!" with a big smile, when I sat down to give him a snack the other day. (We had been out of yogurt for awhile, and Pete had just gotten some more for him.)

Annie

Jack (the name of our cat, and the word Lively uses for all cats)

I love you (repeated back to me when I put him to bed at night)

Also on September 6, I took Lively to see Dr. Richard Solomon, who is basically an autism specialist. He's the same doc that I had been hesitant to see because he's in private practice, doesn't take insurance, and costs quite a lot. But I finally made the appointment for Lively with him, because I felt like Lively needed more than what he was getting and because quite a few people recommended him to me. So we went. And here's what happened:

Lively was instantly crazy about him. He looked Dr. Solomon delightedly in the face, and approached him to play with him. Lively was so obviously happy and relaxed and joyful in this doctor's presence, in a way that I have never seen him be for an extended period of time with any other provider, that it was obvious this doctor understood my kid. I had to trust him.
Dr. Solomon confirmed the diagnosis of autism spectrum disorder.
Dr. Solomon talked with an authority and expertise about autism that I have not encountered with any of the so-called specialists we had seen already. He knows the studies and the treatment options and the theories and the data behind all of them.
He talked to me about prognostic indicators. The two best ones: any speech before the age of 3, and the ability to follow one-step commands. Lively does both. (I said Lively, jump! And Lively stood up with a big smile on his face and jumped.) "This is great news!" Dr. S said. Lively is likely to do really well. He may be able to go to a normal school! He can make friends! He may go to college! He may fall in love and get married and have babies and have a happy life! No one until that day had said any of these things to me. I had asked other doctors, therapists, etc, and they all sort of averted their eyes and said, we'll just have to see. But this doctor, who seems so knowledgeable, is the first person who has given me hope since we started down this autism road. He said, "Lively's prognosis is excellent." Excellent!
He doesn't think Lively is cognitively impaired. Lively approached Dr. S at one point and grabbed both his hands (I've never seen him do that before) and Dr. S sort of shook Lively's hands to a rhythm. Then Lively turned to me and picked up my hands, obviously wanting me to do the same thing, so I shook his hands to a different beat. Then Lively went back to Dr. S and grabbed his hands again to do yet another rhythm, all the time smiling, making eye contact, completely engaged with both of us. And Dr. S said, "Look! He's not cognitively impaired. He's smart! He just invented a game!"
He offered us a treatment plan. Basically, a therapist will come to our home or maybe sometimes Lively's school, and will teach us how to engage Lively to help him connect emotionally with us, and ultimately with other family members, his teachers, and friends. Instead of meeting certain goals set by a program (for example, teaching him his colors or numbers or ABC's) we stay flexible, follow his leads, base our interactions around the things he loves to do. We focus on social skills and emotional development where other programs put kids through academic drills and try to develop competence in specific skills. The theory behind Dr. Solomon's therapy is that you start by helping build the emotional connection, and the rest (language, cognition, etc) naturally follows. He's been running this kind of program for over 10 years now, and he really thinks it will help Lively. And I believe him.

I can't even explain what it feels like to have been given this hope. We have been living without it for so long now, with our hope being taken away from us little-by-little, that it wasn't until someone trustworthy gave it back to us that Pete and I realized how bad we had been feeling. I can't explain how being able to hope again for things we thought we had lost has changed us. I feel like Dr. S had lifted away a weight that has been sitting on my chest, and now I am light and I can breathe again. Or perhaps fly.

We start with the P.L.A.Y. project in December or January. We are going to have to live on peanut butter sandwiches for awhile to make it work, but we all love peanut butter, so it's OK.

And speaking of peanut butter sandwiches, we started adding gluten and dairy back into Lively's diet, and he's doing just fine. He's eating more and more, probably because he has more choices now. He struggles with some textures, but for flavors that he loves (crackers, pretzels, corn chips, cinnamon cheerios) he manages to chew and swallow with no problem. We're not able to get enough calories and volume in him by mouth yet, and we usually give him formula and water after dinner, but we stopped giving him tube feeds overnight 2 weeks ago, and it's going really well. He's lost a little weight, which scares me a bit, but he's hungry during the day and he's learning how to eat! Now if only we could get him to take his medicine by mouth. Still, good things.

Dear Doc

2011-07-29T16:12:00.000-04:00

Katie Pasque, MD
Clinical Instructor
Department of Obstetrics and Gynecology
University of Michigan
Briarwood Center for Women, Children, and Young Adults
Building 2, Suite B
400 East Eisenhower Parkway
Ann Arbor, MI 48108

Dr. Neurodevelopmental Specialist
Helen DeVos Children’s Hospital
Neurodevelopmental Pediatrics
426 Michigan Ave NE Ste 102
Grand Rapids, MI 49503

Dear Neurodevelopmental Pediatrician at the only Intensive Feeding Program in Michigan:

I am writing to you directly because I am getting nowhere by trying to go through the suggested channels. I have been trying to get my son Lively placed on the waiting list for evaluation at your program for one year now. I have spoken to your coordinating nurse at least 4 times. I have left many voicemail messages that were not returned. Last week, the nurse from your program promised that she was faxing a referral form to my pediatrician, Dr. XXXXXXX. Dr. XXXXXXX has diligently followed through on multiple referrals to every specialist imaginable for Lively, including calling your program to try to make a referral himself. Still, we have not been successful in scheduling an evaluation. I am contacting you to ask for your help in having Lively seen by your group.

My son just turned 2 on July 15. At 6 months he started having seizures and was diagnosed with infantile spasms. An MRI showed a right parieto-occipital stroke. He was treated with ACTH for 3 months. He breastfed exclusively for 6 months without problems, and at 6 months when we introduced solids, and also started ACTH, he was ravenously hungry and ate big bowls of mashed potatoes with broccoli and peas. He ate until he was so puffy that I was afraid his skin was going to burst. At 9 months he stopped eating and drinking one day, for no reason anyone can understand. He was admitted to the hospital for dehydration, and developed diarrhea and vomiting. During one vomiting episode, he was on his back and obviously aspirated. He had breathing distress immediately and within a few hours was intubated. ENT scoped him and diagnosed tracheomalacia. After 24 hours, he was extubated, and immediately failed and had to be re-intubated for a week. When he finally came off the ventilator, he refused to breastfeed for days, and when he finally tried, he obviously aspirated. A swallow study confirmed this. An NG tube was placed, but he vomited with every feed, so the tube was advanced to an NJ. He tolerated continuous breastmilk feeds. At 11 months, his NG tube was misplaced (at home, by me) into his trachea. He had a pneumohemothorax that required surgery. Again he was intubated and failed extubation after 24 hours. His airway swelled, and it took the doctors more than 30 minutes to replace his ET tube. During that time he was difficult to ventilate, and he became very hypotensive. He required the ventilator again for a week. Later during that long hospitalization, he got a GJ tube.

After Lively came home again with us, my husband and I were able to transition him from continuous GJ feeds to bolus G-tube feeds over the course of many months. We slowly introduced pureed foods and thickened liquids. Today, a year later, he eats stage 2 purees, and occasionally some soft stage 3 foods. He is able to drink water from a sippy cup. He does not know how to chew, and when we offer solids, he holds them in his mouth and eventually spits them out. His OTs believe that he is not able to coordinate chewing to push foods between his teeth or to form a bolus that he can swallow. He receives around half his calories overnight through the G-tube.

My son’s other medical problems include global delays, likely due to his stroke. His seizures are under control with Keppra, and his EEG no longer shows hypsarrythmia, and continues to look more normal each time. He started walking at 19 months and is steadily gaining strength in his left side. He has fine motor delays, but they are improving with therapy. His cognition appears to be improving as well, as he is increasingly imitating, referencing, and trying to sign and speak. Nevertheless, he meets criteria for autism, and received this diagnosis in April, at age 21 months. He is a very happy and engaged little boy, and although my husband and I understand that he qualifies for the autism diagnosis, we have hope that he will continue to improve so that he no longer carries this diagnosis.

With regard to his feeding, we have hit a wall. We cannot get more than 50% of his calories into him by mouth. He is showing no improvement with his ability to tolerate solids.

I know that my son would not have received half of the care that has helped him if I had not been proactive in getting him the appointments that he needs. I have tried to go through the “regular” channels, but almost always, that has failed me, both at U of M, and now with your center. So I am asking you to please help my son be seen by someone who might help him. We have exhausted our resources here, and need your help.

Please contact me with any questions or advice. I look forward to hearing from you.

Sincerely,
Katie Pasque

To my most special boy, on his birthday

2011-07-15T22:20:00.009-04:00

Dear Lively,

You are two!

You started your second year in the hospital, just 2 floors above the place you were born. You were hospitalized 5 times in your first year, but happily only once during your second, and you have managed to stay healthy enough that we have stayed out for 11 months now.

This is a picture of you on your first birthday. We spent it in the hospital. You had presents and cakes, and I gave you a little bit of icing on your lips because you weren't eating at all at that time. I think you liked it though!

Seeing these photos of you makes it feel even more surprising to me that a whole year has passed. You were so different then, in so many ways. One year ago you could not sit up. You basically did not eat at all. You had a G-J tube, which meant either I had to dress you in button down shirts, or I had to cut holes in your shirts so the tube could come through. We fed your intestine directly, and you weren't able to tolerate much more than a dribble, so we pumped feeds into you continuously.

This is a photo from your last readmission to the hospital, when you were 12 1/2 months old. Even though you had the G-J tube, your doctors placed an N-G tube as well to drain your stomach because you were vomiting so frequently. I fought this because your last N-G, placed by me, led to hydropneumothorax, surgery, intubation, failed extubation, and a very scary week in the PICU. In this picture, you are in the hospital, but not in the ICU. We waited, you received hydration through your tube, you got better, and we went home after about a week.

When you recovered enough to go home, you looked like this:

You were still so chubby due to all those months of ACTH. You were pretty uncomfortable, because of the new tube sticking out of your tummy, and also, I think, because you had so many rolls on you that it was hard for you to move around. You just didn't feel well at all. You were taking about a million medications, and you vomited several times each night.

Daddy and I slowly transitioned your feeds from your intestine to your stomach as your digestion improved. We weren't able to find a doctor or therapist who understood what was happening to you, or who could give us suggestions to help you improve, so I got most advice from other parents on the internet whose children were going through similar situations. In early September, when we had completely transitioned to stomach feeds, the big tube was replaced with a much more discrete G-button.

Despite being told that you were aspirating on a swallow study and that we should limit feeds to your G-tube, Pete and I felt you were making no progress in overcoming your oral aversion or in learning to eat, and so we started to feed you by mouth. We gave you thickened, pureed foods, and you spit out 100% for months. We would sit with you for hours at a time each meal, trying to convince you to swallow. You didn't for several months. And you looked like this when you tried:

Beautiful!

By fall 2010 you were able to sit. You were even able to slide (with help)!

In this picture, you were actually well on your way to slimming down, although it's a little hard to tell. Look at the rolls behind your knees!

During all of this time, you were as weak as a kitten. You tired easily. We went to physical therapy 2-3 days a week. You learned to sit. And kneel. This is a post-sit, pre-crawl photo of you from October 2010.

By mid-November, right around 16 months, you were finally strong enough to crawl. As you developed, we also noticed more obvious weakness on your left side when compared with your right. None of these things are apparent in the following photo, which was taken in November 2010. You look upright and steady.

Your progress through the winter months was slow, but we felt we were heading in the right direction. You strengthened the muscles in your arms and legs. And you learned how to be a snow-dino.

Although you still struggled with food and drink, you learned pretty quickly how to eat snow.

In March, when you were 19 1/2 months, we finally celebrated your first steps. You worked so hard for them! We spent countless hours of physical therapy (not to mention 4 or 5 other kinds of therapy) trying to get to this milestone. When I watched you walk for the first time, I felt a weight lift that I hadn't even known I'd been carrying.

As soon as you started walking, you immediately started to lose your baby weight (and your ACTH weight). By Easter, you looked like this:

You started to eat more and more, but not enough. You were able to take in about half of your calories by mouth, and for the other half, we ran formula through your tube overnight. We realized that you didn't know how to chew, and so we added occupational therapy sessions to try to help. You don't seem to understand how to coordinate using your teeth and moving food around your mouth in order to swallow. Today, you continue only to be able to take in half your nutritional needs by mouth, and you are able to eat only soft or pureed foods.

In April, at 21 months old, you were diagnosed with autism. The worry I had lost when you walked resettled and brought friends. We don't know what to think about this diagnosis. We aren't sure what it means for you now, or what it will mean for you as you grow. The uncertainty is hard on me. I try to stay positive for you, and your happy disposition and smiling face make it easy to do when I am with you. You learn something new every day. This is a picture I took in May of you practicing your dancing:

I look at these photos of you, and still wonder if the autism diagnosis is correct.

Today was a bittersweet day for me, and for Daddy too. You are two! You walk! You eat (some)! You drink (a little)! You are snuggly and loving and happy. But today, when I went to the grocery to try to buy a gluten-free casein-free cake for you (I was sure Whole Foods would have something, but they didn't), I couldn't help but think, the life I planned for you included cake and ice cream. It didn't include g-tubes, intensive early intervention, feeding programs, autism studies, hospitalizations, and seizure medication. Tonight, we ate ice cream bars for dessert (you had a chocolate-covered coconut milk bar) instead of cake, and no one seemed to mind.

My wish for your second birthday is that when we have to make compromises in the future, it be no harder than replacing cake with coconut milk bars.

Happy birthday, my love. May you continue to be as happy as you are today, despite the challenges you face, and those to come. You are my sunshine.

Love,

Mama

Vacation

2011-07-10T23:06:00.000-04:00

I was off work last week (Pete is off for the summer) and since we just moved, we spent the week unpacking, at least a little, and generally trying to get settled. Lively had several appointments, including his new Early On Young Twos group, which is now twice a week, and I spent hours on the phone trying to coordinate speech therapy (I've been fighting with insurance and for new approval for this since March) and looking into intensive feeding programs. More on this another day, but suffice it to say, I'm beyond frustrated. However, Pete and I both got to spend a lot more time with Lively this week, and we really noticed what we are hoping is developmental progress. Here are the things I can remember right now:

Lots of uh ohs, used appropriately, or, perhaps, a bit sarcastically. (Ex: Lively throws spoon full of oatmeal on the floor. "Uh oh!")
More repetition. This morning as I was telling Pete that I put applesauce in Lively's cereal, he said, "a-poo" several times.
He has been signing "eat" appropriately consistently! If he's hungry, he'll walk to us and sign "eat" by holding the tips of his fingers to his mouth. This is a huge step in his language development: he wants something, he formulates a word in sign language (or sometimes verbally), and then uses it correctly. For his other words, check out my list on the right side of the page.
Lively has learned to flip the light switch on and off with one finger. Pointing is a skill that has not come naturally, and we have worked on it endlessly. The work continues. But he loves to flip the switch, and he does it with one finger.
When he wants food that's out of his reach, or a toy, he reaches for it instead of throwing himself on the floor and having a tantrum. We still have plenty of tantrums, but he's figured out that he can reach toward something to show us, "I want that." Most 9 months old do this, but Lively just learned it.
We've taken him out in public, at times to very crowded places, and he's done generally well. Pete took him to the last night of Top of the Park (part of Ann Arbor's summer festival) tonight, and it sounds like he only had the normal 2-year-old kind of tantrum (when he wanted to go in one direction and Pete needed him to go in another). Yesterday we took both kids to the Ann Arbor Farmers' Market, and he did great! It was so crowded we could barely make our way through, but Lively rode happily in the stroller with Annie and calmly took in all of it. A woman even walked up to him and baby-talked to him about how cute he is (she is so right!) and he gave her a winning smile.
We've also had friends over several times in the last week or so, and Lively has given lots of high fives, hugs, and has even allowed himself to be held for around 5 seconds by someone other than Pete or me. When kid-friends come over, he is delighted and follows/chases them. He wants to play!
Lively is babbling a lot! Sometimes he sounds like he is speaking another language that I don't understand fluently. He may be. He's speaking Lively.
A couple days ago when I was giving Lively a bath, I said, "Let me put bubbles on your foot," and he held his foot out of the water for me! He knows where his foot is! He knows what his foot is!
He let me give him a haircut. Sort of. This involved me sneaking up on him while he was playing in the sink and getting approximately 3 snips, following him around the house for about an hour (4 more snips), and then Pete came home and held him and distracted him so I could complete the "cut."
He's been singing! Well, humming. While I was driving him home from Early On, I heard humming coming from the back seat. I hummed with him, 2 or 3 notes at a time, and he imitated the tune.
He has been finding my shoes and stepping into them and walking around the house, saying and signing "shoes."

Yesterday Lively picked up my water bottle, pretended to drink out of it, and then pretended to feed me with it. This is called associative play, and we haven't seen a lot of it. It's a developmental milestone, so hopefully we'll see more.

It's been a great week.

Be vewy vewy quiet, I'm hunting wabbits.

2011-07-06T23:13:00.000-04:00

We moved into our new house last month, and a family of bunnies moved in under our deck. They're very cute. There are little baby bunnies everywhere. And Annie loves them. She sees them and gets very excited, and wants to hold them so badly that she gets a little upset when they hop away.

Tonight Annie and her friend Alicia were playing in our back yard, and Annie decided they should go find the bunnies. The girls (4 years old and almost 4) had been running wildly around the yard, and so I suggested that they move quietly so that they might not startle and scare away any nearby bunnies. Annie went around to all of the adults with her finger to her lips, "Shhhhh. We'w going to look fow bunnies." Lively wanted to play with the girls so much, and was following them around, and after Annie starting shushing all of us, he turned to me with a big smile on his face, and put his index finger next to his mouth. "Shhhhh."

Here's a picture of Pete and Lively from this weekend. I like dressing them alike!

Socks

2011-07-03T23:45:00.001-04:00

This story is per Pete's account:

This morning, Pete went to get Lively out of bed, and as soon as he lifted Lively out of his crib, Lively looked over to his dresser, pointed, and said, "Ssssaah." Pete put Lively down on the floor, and Lively walked over to the dresser, picked up the socks on top, then walked back to Pete, handed him the socks, and sat in Pete's lap. He then signed socks, as he said "Ssssah." Pete held the sock open, and Lively happily put his foot into it, signing "socks" over and over.

We've practiced the sign for socks before, awhile ago, but not lately, and I haven't ever seen Lively do the sign before today, especially unprompted.

When it was time for nap, I attempted to remove Lively's socks (it was 90 degrees outside, and not a lot cooler in his bedroom), and Lively expressed his dissent, and repeated the socks sign. I left them on. And gave him about a million kisses.

Today's other fun tidbit:

We sang, "If you're happy and you know it" with Lively today out on our porch, and Lively danced around delightedly for the whole song. He has learned to clap his hands, stomp his feet, or say "hurray!" (he just lifts his arms over his head with a happy smile) at the appropriate time in the song, instead of throughout the whole song. (If you're happy and you know it stomp your feet. *STOMP *STOMP.)

We were all happy. And we knew it.

23 1/2 months, some of today's accomplishments

2011-07-02T02:37:00.000-04:00

My brother (aka Uncle Robbob) and his girlfriend Taylor are visiting for a long weekend. Taylor hasn't seen Lively in over a year, so he doesn't know her, but he has really warmed up to her quickly. He approached her several times today (the first day of their visit) and gave her hugs, and tried to climb up on the couch with her. He won't let her hold him - he really only lets Pete, our babysitter, and me hold him - but I've encouraged Taylor to keep trying, so maybe by the end of the visit he will tolerate it more.

My brother has a beautiful dog, Bo, who came along for the visit. Annie and Lively haven't spent much time around dogs, but they are crazy for Bo. Lively walked up to Bo several times this evening and touched him quickly, with one finger, and then ran away squealing delightedly and very proud of himself. Notice, I said one finger. We've been working hard to get Lively to gesture toward anything, and pointing with one finger is a new and advanced skill for him. I've been working on pointing with him multiple, multiple times a day. I make his finger point while holding back his others when I known he wants something, when we're reading a book, whenever I'm trying to show him something, and he seems to be starting to get it.

And, Lively also said "Bo." I'm trying not to be offended that he still doesn't really say "Mama" (just kidding, I'm thrilled for every new word.) There's something about the way he vocalizes that is seeming stranger to me. He seems to know that he sees Bo, he likes Bo, he wants to pet Bo, and that Bo is an all-around good idea, and he seems to understand that Bo is Bo's name. But Lively has a hard time getting it out. He tries to say Bo, but it just doesn't always come. Another example: he's obsessed with ceiling fans (not in an autistic repetitive motion spinny way, ok, well maybe just like that), and he often wants me to walk into a room and turn on the fan. So I've been working to teach him to go into the room, point to the fan and sort of trace the movement of the fan in the air (we're making up our own signs now), and say "fan". Instead, he says "ffffffff..." He just can't get the word out. He knows the word and what he wants to say, but he's not able to make his mouth say that word.

Just some of today's observations. Hopefully I'll have more (positive ones) to share tomorrow.

23 1/2 months

2011-06-29T23:59:00.001-04:00

Today Lively played happily with his Aunt Penny for around 30 minutes. This is a big deal because when he's outside of his comfort zone, Lively oftentimes just sort of melts down and refuses to function. Penny lives in Oklahoma, so the kids only get to see her 3 or 4 times a year, but Lively had tons of fun playing with his connecting beads, and was even able to push 2 of them together, which is something I'm not sure he's done before. He still has a lot of fine motor delays and left-sided weakness because of his stroke, and he struggles to manipulate small objects. But today he connected 2 beads. Go Lively!

Lively also enjoyed playing his xylophone with Penny, and even signed "music" to all of us on his way to bed.

Right now, Lively does these signs pretty consistently:

all done
cup
shoes
night night
love
eat
up
down
bye bye

And that's about all we have for words. I guess it's a start.

The First 100 Days of Autism

2011-06-29T23:38:00.000-04:00

It’s not that I haven’t wanted to write here, it’s just that I let too many days go by, and there’s too much to say. Sitting down and tackling it all is a bigger challenge each day, and each day I feel a little less up to it. But here’s a start.

When a kid is diagnosed with autism, the parents are usually given a book called The First 100 Days Kit, put together by an organization called Autism Speaks.

Lively was diagnosed around 80 days ago, if my calculations are correct, and I haven’t cracked the book yet. OK, I cracked it, skimmed it, and put it away.

Perhaps the kit would be better named the Second 100 Days of Autism, especially if many parents respond the way to this diagnosis that I have – with denial. I will, I’m sure, spend at least the rest of the first 100 days trying to convince myself that Lively is not, in fact, autistic.

These are the reasons to which I am clinging today:

He had a stroke, so his developmental delays are due to that, not autism.
Lively spent 3 months on a drug that halted his development. Then he got sick, maybe because of the drug, and spent another several months in the hospital, including intubated for weeks In the ICU. So development was halted by non-autism medical issues.
He’s probably not talking because his stroke affected his speech centers in his brain, not because of autism.
He makes great eye contact and is very engaged, so not autistic.
He’s making developmental progress.
He gives hugs and kisses.
After everything that has happened, surely to God this can’t happen too.

Lively’s Early Intervention providers, however, are not on the same page.

Lively gets services through the Ann Arbor Public School system through Early On, at the Ann Arbor Preschool. There, they have 5 (!) preschool classes for autistic kids. These are just for 3 and 4 year olds living in Ann Arbor who have already been diagnosed with autism. 5 classes. Lively’s occupational therapist told me that in rare circumstances, if a kid is really in need of intensive intervention, he can start in one of these preschool classes at age 2 ½ instead of waiting until age 3. It took me a few weeks to realize that she was talking about Lively. In need of intensive intervention. Don’t wait until age 3. Start now.

Lively turns 2 in 2 weeks. So he will probably start at the preschool in January, 5 hours a day, 5 days a week. The first class is a “level 1”, where the kids have to be 1 on 1 with their teachers because they’re not able to communicate enough or work well enough with other kids to be in a group setting. There are level 2 and 3 classes, where kids are able to function progressively better in classroom settings, and hopefully Lively’s functioning will improve enough that he’s able to move through the levels.

It was a shock to me to realize that Lively would even qualify for this kind of intervention. I’m barely able to admit that Lively might have autism, much less that he is severely impaired and low-functioning enough to be put on the fast track for these special services.

I can’t even begin to start to explain how all of this has changed my life. I worry about Lively every waking hour of every day. I worry so much, that I think it’s making me sick – I have had this silly cold that has hung on for weeks and has now progressed to bronchitis requiring oral and inhaled steroids and breathing treatments every 4 hours. I’ve never wheezed once in my life, and now (literally, right now) I’m breathing nebulized albuterol. It’s not actually unusual for me to be a stress case – I mean, most people who are dumb enough to think that going to medical school is a good idea have enough type A in them that they have their share of migraines, but really, my lungs have stopped working. I’ve never really believed that stress could affect me this way, and I’ve never put much stock in naturopathic medicine (Why do they call it alternative medicine? Because if anyone could prove that it worked, they’d call it medicine!) but I feel the need to take some vitamins and perhaps find a meditation retreat in the mountains somewhere. Trust me, I’m crazy enough right now without adding 60 mg of prednisone each day into the mix.

Goal number next, in an effort to be positive, is to try to enter Lively's accomplishment of the day as a blog entry, on a semi-daily basis. My idea is that if I do this, I can look back and really see his progress, and progress always makes me feel a bit more hopeful. Yes, I'm the same person who vowed to blog weekly and then took 3 months off. But it's good to have goals, right?

10 Reasons That Autism Sucks

2011-04-22T16:08:00.001-04:00

1. Second-guessing. A few weeks ago, Lively learned an adorable new trick from his big sister. When we sing "Ring around the Rosie" a HUGE smile comes over his face, and he slowly walks in a circle, to the beat of the song, and at the part that goes, "We all fall down!" he falls down. He even says, "Dun!" I was thrilled to see this because I don't always know that he understands much of what I'm saying to him. Now at least I know that he anticipates the words to the song and maybe even has a clue as to what "down" means.

Now that he has the autism diagnosis though, I second-guess everything he does. Is he spinning because he's playing a fun game, or because he has autism and spinning is a repetitive stimmy thing? His therapists tell us we should try to stop him when he's doing a repetitive behavior and redirect him to something else, but I don't know what this behavior is! All little kids spin around, right? So is Lively's spinning a normal little kid thing, or an autistic thing?

2. Is autism the wrong diagnosis? In my last post I talked about Lively freaking out in the grocery store recently, crying, overwhelmed, terrified. And during that episode, all I could think was, this is it. My baby has autism. But all kids freak out in grocery stores once in awhile, right? So was it just a bad day, or was is autism?

A few days later, Pete and I took Annie and Lively to the mall. Our house is for sale, so when there is a showing, we have to leave for an hour or two. For this trip, Lively looked like this:

And the mall was crazy! It was full of large groups of roaming teenagers, one store blasted music so loud that I could feel the floor outside vibrating, Annie ran around screaming her head off, weird lights made pictures on the floor, the Easter Bunny was there, and Lively was FINE. He chased his sister around, laughing delightedly. He got frustrated when I tried to make him try on new shoes in a nice quiet little store, and happily ran out into the chaos. And Pete and I thought, he isn't autistic.

The next day, we took Lively to Lowe's, and he looked like this:

I can almost convince myself that there isn't a problem here.

3. Is autism the right diagnosis? Lively has had a gastrointestinal bug the last few days and hasn't been able to hold down any food. He has a runny nose too, and seems not to feel well. Last night we walked over to our new house, and instead of happily frolicking in the back yard (which is a beautiful fenced-in yard, and I have been dreaming about seeing my kids chasing one another in it), he cried so hard when I picked him up that I eventually set him down in the grass and let him rock and do this finger-flicking thing he's just started to do. My heart broke into a thousand pieces.

4. I feel enormous self-imposed pressure to quit my job and devote myself full-time to doing therapeutic activities with Lively to help his development.

5. The problem with number 4? Therapy is incredibly expensive. My 21-month-old has around 10 words that he uses so irregularly that I'm not sure we should really even say he has 10 words. He needs speech therapy. But the fine print in our health insurance policy reads that although we are entitled to 60 visits of PT, OT, and speech per year, if Lively is eligible for free services, such as those in the public school system, insurance may decline to pay for additional services. Lively gets about 25 minutes of speech a week through Early On, but I haven't been impressed at all that it has made any difference for him. He needs more. A speech therapist who recently evaluated him recommended at least 2 hours of additional speech per week, and this, if we need to pay out-of-pocket, will cost around $1200 a month. And that's just speech. What if I want to take him to music therapy (which has been shown to be helpful with some autistic children)? Another $100 a month. The local pediatrician who specializes in autism and comes highly recommended, but doesn't take insurance? $300-$500 a month. The herbal supplements and millions of other products the internet recommends? $300 a month at least. So actually, instead of cutting back, perhaps I should pick up a second job.

6. When I do come home from work, I'm so exhausted both from work-related pressures as well as the underlying stress that comes from worrying about Lively 24/7, that my fuse is short and I'm not the positive, patient, therapeutic-play providing parent that I want to be. It takes all of our energy to get dinner on the table, to bathe a kid or two, give Lively his medicines and set up his tube feeds, read him a story, watch a Phineas and Ferb with Annie, read her a story, and get them both in bed. And then it's 9 o'clock. Which is when Pete and I crawl into bed and both fall asleep in the middle of a conversation about how I'm so worried about Lively.

Despite my neglect, the movie star seems to be taking things in stride.

7. The internet. I frequently tell my patients not to believe everything they read online. But there is so much conflicting information out there, I just don't know what to do. Do I experiment with a gluten free casein free diet? Am I the worst mother in the world if I don't try this? Do I vaccinate him when it comes time for his next round of shots? I have always believed whole-heartedly in vaccinations, and if I decided not to continue to vaccinate him, I think I might worry just as much about his risk of measles or rubella. Do I try the million-dollar vitamin supplements? Or the transdermal glutathione cream? I am actually thinking of a trial of the GFCG diet, although I'm not sure how to start because Lively requires about 750 ml of formula in his tube feeds every night, and finding a replacement for that seems almost impossible.

So far when it has come to Lively's health, we have had tons of questions his doctors can't answer. Pete and I have tried various methods to get him to take food by mouth based on things I've read in mom-blogs. And some of them have worked. But seriously, my son won't even eat non-pureed food, so how in the hell am I going to get 1400 calories a day in him if I can't even use his formula to make up the difference anymore?

8. Did I mention, um, the guilt?

9. The unknown. Lively is interactive, loving, happy, cuddly, and engaged. Will he continue to be this way, or will I wake up one morning and no longer see my sweet baby's personality in his eyes? Will he be able to have a job one day, or do we need to start thinking about providing for him forever? Should I hope for better treatments and therapies, or just accept that he will always struggle with this diagnosis?

10. I am neglecting the rest of my family. And myself. I need to go to the dentist. I need a haircut. I need to exercise. I need to cook a healthy meal for my family. I need to have a conversation with my husband about his day without being interrupted by kids or being too tired to listen. I need to be able to focus on Annie. I need to be able to provide a more therapeutic environment for Lively. I need a vacation (and for everything to be perfect when I get back).

Fortunately, for now, despite the suckiness of autism, I still come home to this guy every day. Seeing him and Annie and Pete when I walk in the door is the best moment of my day. You can probably understand why.

Autism Awareness Month

2011-04-05T22:35:00.000-04:00

As my recent posts suggest, I have been more acutely aware of autism in the last few months than I ever have been before. It's a much-feared diagnosis for all parents, I suspect. Since the first instant that it was suggested to me that Lively may have some autistic features, I have been trying to find a way to prove that it's not true, that the developmental delays he has, the flapping, wheel-spinning, hand-twisting, and head-shaking can be explained by his stroke, his history of infantile spasms, anything else. Each time he looks me in the eye, checks in visually with me while playing, happily approaches another person, or waves bye-bye, I put a mental check mark in the "not autism" column in my mind.

For the last 2 days, Pete and I have participated in a study at U of M: the First Words Project. Yesterday we had a 4 hour interview with a very nice psychologist specializing in autism diagnosis, and today Lively underwent 3 hours of testing, including the ADOS (Autism Diagnosis Observation Schedule) and a different test that assesses his cognitive development. Last month the developmental pediatrics specialist we saw diagnosed Lively with Pervasive Developmental Disorder, Not Otherwise Specified. Today Lively was diagnosed with autism.

I was expecting the spectrum diagnosis (PDD), but I was still hoping not to get the autism label. Lots of people don't know what PDD is. It sounds benign, or like a catch-all (we don't really know what's wrong with you, so we'll call you PDD!) It leaves hope that my son may one day not meet criteria for an ASD. Autism comes with preconceived notions. It's a label no one wants, that most people pray to avoid at all costs.

Yesterday I got a big dose of mothering an autistic child. I took Lively for a quick trip to the grocery store with me, which is something we've done quite a few times, although not as much as I had with Annie at his age because we've struggled with physical illness with Lively so many times. He was fine at first, smiling at me, seeming fairly interested in the process. After a few minutes he started to squirm. And fuss. And cry. And yell. And scream. I couldn't console him. I walked to the checkout line, with the most miserable little boy in the world in my grocery cart. I couldn't take him out (I had already tried, which resulted in a back-arching that almost launched him out of my arms, followed by bonelessness that almost made me drop him) so I wrapped my arms around him and tried, with only minimal success, to soothe him. The cashier took my credit card and ran it through the do-it-yourself credit card machine and then signed for me. Two people came over to help bag the groceries, and threw them into 2 carts. Someone walked out with us and unloaded the groceries into my car. They could not have gotten us out any faster. And the instant big-boy was in his car seat, he was happy as a lark.

Should we never leave the house again? Right now, that's my plan.

Back to the testing results -- it gets better. We were also told that Lively has severe cognitive delays. So in addition to autism, Lively also has impaired intellectual functioning. These do not go hand-in-hand; many people with autism have very high IQs. According to the psychologist, with intervention, it's possible that Lively might improve his development, including his cognition, and "catch-up." Right now, my almost-21-month-old is functioning at around 13-14 months intellectually. The worry is that he may fall even further behind. (I actually thought we were intervening with the endless appointments and therapies over the last 9 months, but evidently he needs more.) So we're going to intervene more.

Anyway, I am aware of autism now, and in fact, get to join yet another club -- mothers of autistic children. I know that this diagnosis is not a death sentence, and I know that my precious little boy is the same precious little boy that I had yesterday. I just want every opportunity possible for him, and shit, we barely stop reeling from the last diagnosis, and then we're hit with another. And I'm so freaking tired of it.

Developmental testing, take 2

2011-03-22T23:37:00.004-04:00

The following is the exam, assessment, and plan from Lively's testing a week and a half ago. It took me about a week to bring myself to read it, and I've been thinking about it constantly since. My annotations are in bold.

Lively presents for a neurodevelopmental assessment:

Physical Examination:

GEN: He was awake, alert. He was somewhat difficult to engage. He demonstrated some spontaneously produced speech, reasonable eye contact but notably better with parents. He was somewhat uncooperative with developmental testing. Lively was obviously uncomfortable during the testing, which occurred in a small, windowless, disorganized room with Lively, Pete and me, the attending physician, a resident, and a medical student. Lively was asked to perform in front of 3 people he doesn't know, at very close quarters. The doctor insisted on having him sit in a wooden chair at a table. Lively doesn't sit in chairs other than his high chair, which is comfy, and has a back, arms, and straps to hold him in securely. Pete and I suggested that she test him on the floor, where he would be more in his element, and after he basically refused to do anything for 15 minutes, she consented to Lively sitting in his stroller for testing (also comfy, with back, sides, straps). Yes, he was uncooperative. I felt fairly uncooperative myself.

NEUROBEHAVIORAL STATUS EXAM: This neurobehavioral status exam includes clinical observations and assessment of motor function, thinking, reasoning, and judgment including knowledge, attention, language, memory, problem solving, and visual spatial abilities. Observations as follows:
Activity level: Normal activity

Attention Span: Variable but maintained limited attention with developmental testing.

Gross Motor: Able to walk without assistance with toddler wide-based gait; able to walk up stairs with one-hand assistance; crawls up stairs on own

Fine Motor: Has pincer grasp with cereal; fisted pencil grasp with spontaneous writing. Lively, for the first and only time, picked up a Cheerio with his thumb and pointer fingers, which is the pincer grasp. I have not seen him do it before or since. He'll get there, but now, he rakes the cereal into his hand palms it, struggles to get it to his mouth, and drops it half the time. However, because he did this once, his fine motor skills were judged to be "his best," at 17 months developmentally. This is not the case. And this result is one of many indications, to me, that this particular testing is a load of crap.

Speech and Language: + vowel and consonant sounds, "dada," and other babbling

Mood/Affect: Engaged at times, other times fussy.

Play: Repetitive movements with the following -- moving blocks back and forth, spinning board in circles, flipping puzzle pieces in fingers, banging toys, tapping on the table and wall. Does show symbolic play with hair brush (tried to brush his own hair). Observed his focusing on the lights and finger flicking without purpose. At times, offers toy to share and symbolic play but not consistent behaviors. Subjectively had to work hard to get him to engage with play. These are some of the issues that have had me worried for awhile. Lively has numerous repetitive motions. He used to do a lot of flapping and "stimming", but as he's gotten older, we see this less. He does like to spin toys and to bang on things, but with his motor delays, it has been all he can really do. He will, for example, spin a part of a toy, and seem to focus intently on it, but if I call his name or show him something else, he changes focus easily. He does lots of finger flicking, but only with his left hand, which is the side affected by his stroke. He's always postured with that hand, he's definitely weaker on the left, and we've always thought that it probably feels different to him. As he gains motor abilities, some of his disorganized and repetitive behaviors are shifting. For example, he used to sort of bang around a bucket full of blocks, but now he's able to dump out the blocks and put them back in, so he doesn't really bang them anymore. As far as symbolic play, the doctor gave him a doll and a bottle and wanted him to "feed the baby". Lively has a g-tube, and isn't able to take liquids by mouth at all. He hasn't had a bottle since he was 9 months old, and I know there's no way he would remember what to do with one. If she'd given him a freaking toy phone, he would have held it up to his ear and said, "Dada?"

Cognition: Appeared to be delayed based on his verbal capacities. Object permanence -- able to find ring; able to find car with multiple attempts. This means that he was able to find a toy that was hidden under a blanket. It's a developmental milestone when a child knows that a toy still exists even though he can't see it (object permanence).

Relatedness: Demonstrates some eye contact but notably better with parents. He does check in with parents intermittently. Parents report he is referencing his parents more at home. Referencing is when a child is playing, and he stops and checks in visually with the caretaker, like, look at me! Did you see that?! For a long time Lively didn't do this, but we're definitely seeing it more and more. The other day, he pulled Annie's hair, and got "in trouble" for it (which means we said no, sternly, and picked him up and sat him down in the corner). This is actually mostly for Annie's benefit, to try to show her that it's not OK to hurt people, and to show her that we will not let Lively get away with hurting her. When he came out of time out, he went right back to Annie, reached for her hair, stopped, turned around and looked at Pete, and smiled with an expression that said "Look what I almost did! Ha!" Or other times, he will roll a ball back and forth with Pete, and he'll look at me proudly, as if to say "Did you see that Mom?"

DEVELOPMENTAL ASSESSMENT: Lively was assessed with a Mullen Scales of Early Learning. The Mullen Scales of Early Learning consist of a gross motor skill together with four cognitive skills: Visual reception, fine motor, receptive language, and expressive language. The gross motor skill measures central motor control and ability in supine, prone, sitting, and fully upright positions. The visual perception skill test of the child performance and processing individual patterns, and the primary ability areas covered in the scale are visual discrimination and visual memory. These abilities involve visual orientation, visual sequencing, and visual spatial awareness. The fine motor skill provides a measure of visual motor ability. It reflects the output side of visual organization. These items require visually directed planning. Primary ability areas covered in this scale are unilateral and bilateral manipulation and writing many enough. The receptive language scale measures the child's ability to process linguistic input. The primary ability areas covered in this scale are auditory comprehension and auditory memory. The expressive language scale measures child's ability to use language productively. The primary ability areas covered in this scale are speaking ability and language formation including ability to verbalize concepts.

Lively's scores were as follows:

Gross Motor age equivalent, 16 months; agreed
Visual reception, age equivalent, 14 months; no clue
Fine motor, age equivalent, 17 months; I'd say more like 14-15 months
Receptive language, age equivalent, 11 months; I think closer to 14 months
Expressive language, age equivalent, 10 months; maybe

Lively's age is 19 months. At the time of this test, he was 4 days short of 20 months.

In the domain of gross motor development, Lively could stand and walk up stairs with help.

In the domain of visual reception, Lively could turn cup right-side up, makes object association with brush, looks for car under two washcloths, and shows interest in book as hinge.

In the domain of fine motor development, Lively could bang in midline, take 4 blocks out and put block in, uses two hands together, show refined pincer grasp, turns pages one at a time, imitates crayon lines in any direction. He also showed repetitive turning of blocks, turning of puzzle in circles, and turning shape around in hands.

In the domain of receptive language, Lively could understand simple verbal input (bye-bye) and identifies objects.

In the domain of expressive language, Lively was able to show voluntary babbling, produce three consonant sounds, vocalize two-syllable sound (dada), plays gesture game (peek-a-boo), combines jargon, and said "cu" to approximate for cup.

Impression: Lively is a sweet and adorable 19-month-old little male who presents to the Developmental Clinic with concerns about speech, language, and behavioral development. I couldn't agree more with the sweet and adorable part.

On developmental assessment, Lively demonstrates some receptive and expressive language delays with additional notable deficits in the pragmatics of social communication, which includes deficits in how he uses eye contact to initiate and maintain social interactions with others. He demonstrated notable delays in his expressive language (expressive language skills at 10 months).

In addition, he demonstrated some atypical restrictive patterns of play: moving blocks back and forth, spinning the puzzle base, rolling puzzle piece around in fingers, finger flicking, and banging hands against table and wall. He demonstrated intermittent eye contact and inconsistent social referencing. There was little shared back-and-forth reciprocity with him. I forgot to mention -- she tried to have him do a puzzle. He absolutely doesn't have the fine motor skills yet to do a puzzle. The eye contact is actually much better than what she saw. I think he was just as pissed as I was.

These constellations of symptoms characterized by limited bidirectional social interaction (characterized by poor eye contact and limited use of nonverbal gestures and limited initiation of back-and-forth interactions), and restrictive range of interests suggest a diagnosis of pervasive developmental disorder, not otherwise specified (PDD-NOS). Lively demonstrates some notable strengths, including improved eye contact with parents and an ability to engage in some limited reciprocal activities with his caregivers. Lively is a sweet and responsive little boy who, with scaffolding and redirection, is able to engage in some bidirectional activities. He is verbal and demonstrates limited intentional spontaneously produced speech sounds. It is encouraging that he is demonstrating progress in two weeks since his last visit. He would benefit from early intervention. Perhaps, most importantly, he has loving, invested, caring, and committed parents who are very dedicated to him and who are very vigilant in helping Lively reach his developmental potential. We are happy to support them in that regard.

Our diagnoses are as follows:
1. Pervasive developmental disorder
2. Lack of expected development
3. Global developmental delay.

Medical decision making included the following.
1. Obtaining history from the parents.
2. Review and summary of previous records and evaluation.
3. Findings discussed with Dr. Joshi

Recommendations: Our recommendations are as follows: another interjection here. The doctor spent quite a bit of time with us discussing her recommendations. However, there's a lot here that she didn't mention to us. We don't have a return visit scheduled with her either to discuss further recommendations.

1. Because of Lively's atypical developmental picture, we are recommending a referral to Genetics to rule out a genetic contribution to his atypical developmental picture. She did not tell us this. We told her that Lively has already seen genetics, and the geneticists don't think he needs further evaluation from them. Lively has had some targeted testing, and everything was negative. For now, I'm satisfied that there is not an underlying genetic condition. Lively had a stroke, likely perinatal, which caused infantile spasms and a seizure disorder. He has experienced many complications of medical intervention that kept him either feeling terrible for 3 months due to medication side effects, or that landed him in the ICU on a ventilator (twice) with long term hospitalizations totaling 2 months. So perhaps it's expected for him to have a 5 or 6 month delay.

2. Because Lively has several developmental and learning needs, we are recommending an assessment through UMACC and parents have set up an appointment for early April. Long term needs will likely include the following developmental assessments:

-IQ and achievement testing.
-Speech and language assessment to look at receptive and expressive language and the pragmatics of social communication.
-Occupational therapy assessment to look at fine motor skills.
-Behavioral assessment with some measure of adaptive functioning such as using the Vineland Adaptive Behavior Scales.
-Play assessment and observation of interactions with other children.

3. If Lively does not meet criteria for inclusion in the ESI Program, we would recommend increasing developmental services to include speech therapy twice a week to address receptive and expressive language skills and the social pragmatics. We have been referred for speech therapy twice a week, and our intake is scheduled.

We recommend that Lively receive intense speech therapy to focus on the pragmatics of social communication. We feel that Lively's language needs are best provided by intensive speech therapy at the frequency of 2 times per week. We have given the family a prescription for private speech therapy services for 2 times per week.

Speech therapy can address, for example, having him make requests that involve both the use of eye contact and a combination of vocalizations, and/or gestures and signs. We also discussed encouraging all methods of communication.

4. We feel that Lively should continue occupational therapy to address his sensory symptoms and his fine motor delay through Early On and Milestones.

5. Lively could benefit from the addition of behavioral interventions to assist him with his capacity to engage in bidirectional social communication. I have no idea what this means, or where we get "behavioral interventions".

6. Lively should be enrolled in a full time program which addresses his neurological and developmental needs, and provides intensive services in a setting with a small student-teacher ratio. Lively is at risk for developmental regression if developmental services are not provides in the context of a year-round program. Whaaaaatttt? Um, this is news. Thank goodness I have access to his medical record. What kind of full-time program? Where? How do we get in? How much does it cost? Does insurance pay? This "full-time program" seems like a pretty big thing to forget to mention to the parents. I still don't know what we're going to do about this.

It will also be important that Lively receive services that are specific to children with PDD-NOS. Specifically, researchers recommend that children with PDD-NOS/autism receive 25 hours per week of structured intervention that targets their areas of need. It will be important that therapy focus on building his capacity to engage in reciprocal play with others, building imaginative play skills, as well as minimizing repetitive behaviors and play.

It will be important that Lively's teachers, therapists, parents, and medical professionals, maintain close contact with one another to insure his progress. It will be particularly important that he receive follow-up evaluations of his verbal reasoning skills (and eventually his skills in reading comprehension and written expression) since he is likely to require assistance in these areas.

So, here's my plan:

1. We have intake scheduled through the University of Michigan Autism and Communication Center. However, I'm a little worried about their ability to provide appropriate care to Lively based on an inside scoop. We're going to complete the intake and see how we feel.

2. We have appointments to see almost all of Lively's providers in the next few weeks, and I'm asking all of them about U of M's program, and if they have any other or better recommendations. If my blog-reading friends have information on local resources, I'd really appreciate hearing about them.

3. There is a private doctor in Ann Arbor who seems to be doing important and successful work with young autistic children. He is extremely expensive, and insurance does not cover his services at all. I have a bit of an issue with this. The cost for this care is high enough that Pete and I would have to do some serious belt-tightening to afford it, but if we never go out, ever, and start clipping coupons, we could make it work. And I'm a doctor folks. I work for a university, so although I don't get paid anything like what I would in private practice, I know Pete and I make more money than most families in this country, and it would be a struggle for us to pay for this care. And I just don't think it's right. Why should only the autistic kids that come from well-off families get help? Still, like most parents, I would do anything for my son's health and happiness. Perhaps I'll find out that this doctor donates free or reduced-cost care to families that can't afford to pay him, but if this is the case, it's not indicated on his website. I'd say, however, that there's a pretty good chance that I'm going to take Lively to see him for an initial assessment.

4. We're going to get lots of speech therapy.

5. We're probably going to add some more occupational therapy.

6. I'm going to try, very hard, not to lose my mind.

News from Livelyland

2011-03-05T16:08:00.000-05:00

The good:

Lively is walking! Two weeks ago, Annie was popping bubbles in a long strip of plastic bubble wrap that came in a package. Lively picked up one end of the strip and walked across the room! He was completely unsupported, but I don't think he knew it.

A few days later, he picked up a drumstick and did this:

Within a couple of hours, he figured out how to walk without a drumstick! We were, as you can imagine, beyond thrilled.

The bad:

Sometime this last week, after being able to walk for only a couple days, we think Lively fell and hurt his left foot. His left side is his weak side due to his stroke. No one saw him do it, and we can't be sure that's what happened, but around a week ago, he just stopped walking. He will stand and hold our hands and walk around, but he favors his left foot. He just got a taste of walky-freedom, only to lose it within days.

More bad:

A week ago, Lively was seen by a developmental and behavioral pediatric specialist. This doctor had come very highly recommended by Lively's neurologist, and I can understand why. She seemed very knowledgeable, explained things well to us, and seemed very thorough. The following comes directly from her note:

Activity Level: Activity level appeared appropriate for age. He did not appear to be hyperactive.

Attention Span: He was able to remain in attention for less than 30 seconds with developmental task. He sat in the chair independently for the first five minutes and then would not even sit while on either mom or dad's lap.

Gross Motor: He repetitively makes a fist with his right hand and holds it and brings up to his mouth. There was some mild finger flapping noticed. He also rocks frequently from his left to his right foot and shakes his head repetitively. He seemed to enjoy standing, going from a sitting to a standing position while sitting on his father. He also demonstrates "W" sitting, which is suggestive of ligament laxity.

Fine Motor: Lively was not able to put coins into the piggy bank. He was able to pick up a spoon, though at times he would move the spoon about three times before picking it up. It was unclear if this was a repetitive motion or if this was because he had a difficult time picking it up. He also tried to use the buckles in his stroller to buckle himself in; however, he was unable to do this.

Speech and Language: Lively does a lot of jabbering and humming. I also heard him say "mama" during the examination. He does demonstrate some communicative intent but he is not always trying to have a conversation. He did smile imitatively and used sign language for more with his father. I also heard him say "dada" during the exam. He vocalized both vowels and consonants.

Mood and Affect: Overall, Lively was quite pleasant and engaged well with the examiner. He was frequently smiling and was very easy to soothe him.

Play: We did see multiple episodes of motoric play by Lively, including bouncing up and down on his dad's lap which appeared to be stereotypic at times. In addition, he demonstrated some repetitive play characterized by flicking and turning of toys, and repetitive banging of spoon on a chair. He demonstrated minimal symbolic play.

Cognition: Cognition appears to be delayed based on the quality of his vocalizations.

Relatedness: Lively demonstrated intermittent eye contact (preferentially directed to his caregivers), and demonstrated some signs of social connectedness as follows: he did come up to the examiner multiple times and smiled. He also took the examiner's hand at one point and he was constantly going back and socially referencing his parents. He also hit a drum with his mother when his mother initiated the game, and then gave her a hug. He played peek-a-boo with dad holding blocks in front of his eyes. He initiated a kiss with mom. He climbed on to the examiner's lap, held her skirt, and grabbed her hand. When we initially walked in, he had a smile on his face, then he sat down, looked at mom and dad and clapped.

However, at other times, he did not seem to be initiating interactions with his eye contact. He did not initiate play with either the examiner or with his parents. He also did not seem to be able to play back and forth with either his parents or the examiner. He did not bring toys to show.

Impression: Lively is a 19-month-old boy with a complicated past medical history including right-sided stroke thought to be perinatal in origin, history of infantile spasms, and seizure disorder, who presented with concerns of autism. Though it is difficult to fully determine whether or not he has autism due to his complex past medical history, and atypical behaviors that may be partially resultant from his previous neurological insults. He does manifest developmental delay, and he has some social interactions which are atypical including lack of initiating and offering of toys. Additionally, he also has some repetitive movement including hand flicking, rocking back and forth, and some hand flapping. Further workup is indicated.

Lively has been given the diagnosis "global developmental delay with concern for PDD-NOS." Pervasive Developmental Disorder - Not Otherwise Specified. This is one of the autism spectrum disorders. Although the name sounds quite vague, it actually means something very specific.

We have more developmental testing scheduled next week, and we are already scheduled for a 3 day, 9 hour intake with the University of Michigan Autism and Communication Disorders Center. If Lively keeps the PDD-NOS diagnosis, we may be eligible for an 18 month research/ intensive intervention project through UMACC. The specialist feels that Lively probably will keep the diagnosis.

That's all I have in me for now. More later.

Anniversary

2011-02-10T14:22:00.006-05:00

Yesterday was the anniversary of Lively's infantile spasm diagnosis, and today is the anniversary of his stroke diagnosis (although the stroke likely occurred sometime around his birth, more than a year ago). I can't begin to put into words what this year has meant to me. Roller coaster is an understatement.

All-in-all, Lively is perhaps doing better than his doctors and therapists thought he would. He is making progress in some areas (mostly gross motor) but his progress is less perceptible in others (speech). Here are some of the milestones for a "normal" 18 month old (Lively will be 19 months in a week). I have highlighted the ones he has met:

Fine Motor

builds tower of three small blocks
puts four rings on stick
places five pegs in pegboard
turns pages two or three at a time
scribbles
turns knobs
throws small ball
paints with whole arm movement, shifts hands, makes strokes
uses a spoon and cup

Gross Motor (12-24 months)

walks alone
walks backwards
picks up toys from floor without falling
pulls toys, pushes toys
seats self in child size chair
walks up and down stairs with hand held
moves to music

Language

Has vocabulary of 5-20 words
Vocabulary made up chiefly of nouns
Some echolalia (repeating a word or phrase over and over)
Is able to follow simple commands
Recognition of pictures of familiar persons, objects
Early 2-word combinations of words emerge
Needs are requested verbally such as "more","up"

Social Development

recognizes self in mirror or picture
refers to self by name
plays by self; initiates own play
imitates adult behaviors in play
helps put things away
points to some body parts
uses familiar objects correctly (cup, key, phone, shoe, etc.)
recognizes pictures of familiar objects or people
tries to figure out how things work

I'm making a point of putting these things in writing so that I can track them myself, and also so those of you who know Lively somewhat can understand everything we're experiencing. In a lot of ways Lively looks like a pretty healthy, normal kid. He's moving around and is close to walking (although not walking independently). But behind the scenes, there are a lot of things he isn't doing.

I just don't know what to make of this. Lively's teacher (he has a special ed teacher through Early On) told me yesterday that most kids who are behind will fall further and further behind. They start out behind and their progress is slower than normal, so the gap between their performance and "normal" continues to increase. That did not sound like good news to me. I suppose the purpose of all this intervention is to narrow the gap as much as possible.

Lively, however, is becoming therapy-resistant. When I take him to the preschool for his speech and physical therapies (also through Early On) he has a tantrum that lasts almost the whole time we're there. I'm not sure that he's getting anything out of these therapies anymore.

Lively also becomes more and more frustrated with his inability to communicate, and lashes out, frequently hitting me in the face. He still cannot point to something he wants. He imitates more, but really only says Dada, and less frequently, Mama. He signs "more" when he's eating, and a few times has signed "book" when we are reading before bed, but that's about it. He can't show me where his nose is. He doesn't reliably "go get the ball." He doesn't try to say "Annie."

And we're still dealing with seizures. I think he is not having infantile spasms now, but he continues to do his eye-jerking thing, usually when he is really tired or right before his Keppra is due. Thankfully, I don't think we're dealing with seizures like we were one year ago today, and we're finished with the horrendous, $150 K course of ACTH. But is it too much to wish for no seizures at all?

Lively is eating more, and probably getting a little more than half his calories from food now. He still cannot drink due to aspiration, but at least he is tolerating some food by mouth. When I compare him to 6 or 8 months ago, we've really come a long way food-wise. But we're still g-tube dependent, and that's unlikely to change in the foreseeable future.

Here's a picture of Lively and Annie sledding a few weeks ago. Lively tried to be brave. Annie loved every minute of it and would have stayed out 3 more hours if we'd let her.

Hope vs. Worry

2011-01-16T21:46:00.000-05:00

I think about hope a lot, probably because I struggle with a hope deficiency most of the time. I'm afraid to hope for Lively, although he gives me a thousand reasons to hope every day. Part of me thinks, if you don't get your hopes up, it won't be quite so terrible if (insert worry of the moment here). As a purging exercise for myself, I will list my top 5 worries here now:

Another stroke. We don't know why Lively had a stroke. Although we think it happened around the time of his birth, we can never be certain. And since we don't know why it happened, we can't know that it won't happen again. We do know that although he had a stroke, Lively was able to eat and drink like a champ until he was 9 months old, and now he aspirates thin liquids and some purees. Why? No one knows, and no one is really pressing the issue (other than Pete and me). My worry? Another stroke.
Recurrent infantile spasms. Lively had about 6 months without any seizures, and then about a month ago, they came back. They don't look like the infantile spasms. Well, they look like part of a spasm: Lively jerks his eyes up and to the left. But there's no limb-jerking, and they don't seem to be progressing. I notice at least one almost every day, some days more, some days none. We have an EEG scheduled in April, and we've increased Lively's Keppra, so the EEG should tell us if the spasms are back, or if he's *just* having partial seizures.
Life-long, uncontrolled seizure disorder. He's at high risk because of his stroke and infantile spasms.
Autism. There is a high incidence of autism in children with infantile spasms. Lively is very speech-delayed and doesn't always engage like we want him to. I wasn't really worried about autism for him until a PT expressed her concern by saying, "he's really in his own little world, isn't he?" and I started reading some things and got worried.
Aspiration. Lively gets most of his nutrition and all of his fluids through his g-tube right now. He continues to aspirate, and it doesn't seem to be improving. Will he ever be able get rid of the tube? Don't know.

There are more, but gotta stop somewhere.

I've asked myself, what would happen if I just started to believe that everything is going to be fine with Lively? He has given me lots of reasons to hope. He crawls, he cruises, he will walk across the room holding just one of my hands. He is happy! For a long time, he wouldn't eat anything at all, and now at times he will eat 4 ounces of food 3 times a day. He has a bright, happy smile. He gives hugs and kisses.

One lesson I learned by being Lively's mother -- I can't prepare myself for having a sick child. Knowing ahead of time would not have made this experience easier, so not getting my hopes up isn't really protecting me at all. I might as well hope for everything for Lively: perfect health, "normal" development, eating and drinking by mouth, school, sports, musical instruments, dating, college, marriage, children of his own. Not hoping for these things isn't going to make it suck any less if he doesn't get them.

The trick, I think, may be to live in the present. Lively is doing really well right now, so I wish I could find a way to be happy about that (which I am) without always looking a step or a year or a decade into the future (which I can't). This may, in fact, be the secret to happiness in general: enjoy today, celebrate the child I have today. I do celebrate him. The future-worry, I'm afraid, might be an unavoidable part of motherhood.

Lively's Fall Developments, Part 1: Gross Motor

2010-12-19T01:12:00.000-05:00

I have so many updates for the last few months that I've decided to try to simplify by dividing them into categories. Gross motor refers to skills involving large muscle groups. This means development of head control, balance and strength. These are the things we work on in physical therapy, so that Lively can sit, shift his weight, crawl, walk.

In August when Lively was 13 months old, I stupidly read the one year expected motor milestones, and he had not met any of them. I'm happy to say, now, at 17 months, he meets most of them (I highlighted the ones he has accomplished):

Reaches sitting position without assistance
Crawls forward on belly
Assumes hands-and-knees position
Creeps on hands and knees
Gets from sitting to crawling or prone position
Pulls self up to stand
Walks holding on to furniture
Stands momentarily without support
May walk two or three steps without support

It's actually nice to be able to look back at the old list (here) and compare it to what he can do now. Four months ago, Lively couldn't do any of these things. Now he can do almost all of them. He started crawling about a month ago (!) and within a week, he pulled up to standing, and within 2 weeks he started cruising. This morning Pete and I took our eyes off him for about 5 seconds and he crawled halfway up the basement stairs! I didn't even know he could go up one stair.

So this is great news, and we're thrilled about his progress. When Lively started trying to get on hands and feet, it was obvious that his left arm was weaker than his right. His arm would collapse after holding himself up for a few seconds. But he has been able to strengthen so that now he can crawl all over the place. When he gets really tired (after chasing Annie for an hour or so), his left arm is noticeably weaker than his right, but clearly he is much stronger than when he started trying to crawl.

About 2 weeks ago Lively was able to start walking while holding our hands. He looks so proud when he does it, and after a few steps he's so pleased with himself, he tries to run! Today he pulled up on the back of my pants, and I started to walk slowly, and he walked right along behind me, holding onto my legs. Now that he's really using his legs, we also see a significant weakness in his left leg when compared to his right. We feel hopeful though that he will be able to strengthen his legs also so that this doesn't cause him a problem.

So, for my readers that may not have absorbed all of my 47 earlier posts, Lively had a right-sided stroke, probably around the time that he was born (although we'll never know for sure), and this is causing left-sided weakness. When Lively's stroke was diagnosed at age 6 months, no one knew what this would mean for him from a gross motor standpoint. We were told he may have cerebral palsy. Actually, he probably does have a mild form of CP, but the fact that he is able to move and strengthen his arms and legs and is progressing so well is a great sign.

I understand now that his neurologist really didn't think he would ever be able to do what he can do now. I didn't realize that at first, but she is so surprised and pleased every time she sees him, I know he's doing better than expected.

The rest of Lively's milestones aren't progressing as quickly as his gross motor development. No one knows what this means. Perhaps these areas (fine motor, speech, cognitive development, social skills) will come along too. We don't know.

I've mentioned this before, but it's something I think about every day: when Lively's stroke was diagnosed, the neurologist told us that we will celebrate each milestone he achieves whole-heartedly, and then we will instantly start to worry about the next one. He was right.

Here's a picture of all the kids on Pete's side of our family that he took on Thanksgiving. The 2 older girls are Pete's sisters, Cassie (holding Lively) and Maggie (holding Pete's sister Patsy's baby, Natalie). Brooke and Leo (also Patsy's) are my kids' older cousins. Annie and Leo look like they could be twins!

I'm back

2010-12-16T13:50:00.000-05:00

Hello blog. I've missed you.

I've been suffering from writer's block. I guess. I think about my blog every day, and think of things I'd love to write, but then I don't. There are a couple of reasons for this.

A lot has been happening. I have about a million Lively updates, and the longer I wait, the more I have to write. So the task feels daunting, and I put it off.

The big reason I haven't written lately is that I am struggling. Some days are good, even great, and others overwhelm me. And that feels so personal, that I'm not always sure that I want to share it. But I'm not sure how to tell Lively's story without getting personal.

I've never been someone who keeps things extremely private, but certainly to a degree there are events, thoughts, feelings that I don't share with people I don't know well. A lot of people read my blog (maybe not anymore, because I've been away for awhile), and I don't want to censor myself for a particular friend or family member or coworker. There's no point in doing this if it's not authentic, I suppose. But I'm becoming more aware that what I want to write isn't really about Lively, but about my experience with Lively and Annie and Pete. And my experience, lately, feels almost too ugly to record. But I suppose I will.

So continue to follow at your own risk. It's about to get personal.

(Well, not right now. I hope to post some Lively updates in the next few days.)

What not to say

2010-11-16T21:04:00.002-05:00

I have a friend whose infant son is currently very sick, hospitalized, and no one knows when he might get to go home. Their situation is terrible. We're kind of new friends -- we knew each other before her son was born, but since then, I have been visiting her and her baby whenever I'm in the hospital, and I think we've bonded a bit over what it's like to be a mother of a really sick child. Recently, we had a conversation about the dumb things people have said to us.

The "stupid things to say to a mom" theme started when I was pregnant. You're so small, are you eating enough? Is your baby OK? My patients tell me all the time that strangers feel free to comment on their bodies, saying things like, Are you sure there's only one baby in there? One of my patients, obviously pregnant, told me recently that she was cornered at the grocery store by a complete stranger who, in giving her unsolicited advice, told her stories of several people she knew who had stillborn babies. This is NOT HELPFUL.

People are dumb. They say all kinds of dumb things, even to mothers of sick kids. Most comments, like the ones below, are well-meaning, but just thoughtless.

And so, inspired by a recent conversation with the friend I mentioned above, I have decided to compile a list of what not to say. Feel free to add to it. I plan to.

1. It's going to be OK.

Actually, it might not. Thank you for wanting things to be OK for me, but they aren't right now, and terrible things happen to people. Saying it's going to be OK invalidates my fears that things may not get better. Instead, say, this really sucks. Because it does.

2. Let me know if you need anything.

There are about 4 people in this world that I will actually call and tell that I need something. I'm not going to ask most people I know for anything. If you really want to help, don't ask, just bring over dinner! Watch my kids for a couple hours! Come visit us! (We're not staying in all the time because we want to.)

3. Once I knew this kid who had seizures when he was a baby, and he's fine now.

This is not comforting information. I hope every day that my son will continue to grow stronger, and that he will be fine too. But that might not happen. We don't even really know everything that's going on with him medically and developmentally, so there's no way to predict what he'll be like in 6 months, a year, 10 years. (However, My friend's kid has a great speech therapist. Would you like me to find out the name for you? is helpful.)

This will be a running list, so please share your stories if you'd like.