That’s why I don’t initially share that Zoe Amanda has cerebral palsy. They won’t be able to see it right away, like they can see the white blond hair or soft blue eyes of our other daughter, but like Jocelyn’s descriptors, Zoe’s diagnosis is simply an attribute. It’s not who she is.

I used to blurt it out. Sometimes it made sense to do so, like when people inquired about the speed of her adoption or the referral coming before the home study. (Neither would have been possible in the absence of special needs.) Sometimes I just wanted to let people know before she arrived, so that they can wrap their minds around that now and be free to simply rejoice with us when we bring her home.

And, to be honest, sometimes I mentioned her diagnosis because I’m a chronic oversharer. It’s a pesky symptom of my socialmediaitis.

My husband doesn’t tell people about her diagnosis. To him, it’s relevant to our immediate family but irrelevant to anyone else. He just wants them to know her face and our timelines and the excitement surrounding her adoption.

She is only six months old now, and we’ll be bringing her home next month. (Hooray!) Given her age and given the absence of any visible signs of her diagnosis, we’ll continue to figure out this whole diagnosis disclosure thing as we go along.

How about you? How have you handled sharing your child’s diagnosis with others? Has that changed over time? (Remember, I’m a newbie to special needs parenting, so I’d love any advice you can offer!)

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 Shannon blogs about her family and life in general at Dinglefest.com, and she writes TheWorksofGodDisplayed.com (and tweets about it here) to equip churches to welcome people of all abilities. 

1.       It gets easier – the idea of raising a child with special needs (special needs being an umbrella to medical challenges). There’s no time frame on when it will feel normal. But it will. It’ll feel your new normal. That’s not a new concept, but know the timeframe is different for everyone. Respect your partner’s pace and their own way of dealing with the new normal.

2.       You will have bouts of sadness for a long time. But slowly, and at a pace your own heart can handle, the bouts of sadness will decrease. And there will be days, even weeks that you won’t cry from a broken heart. One day you might even forget you had a broken heart.

3.       That the capacity to bear bad news grows. Really.

4.       You are the gatekeeper to the kids’ medical care. When I was holding the itty bitty baby in my arms going to those first few overwhelming appointments, it just didn’t occur to me that I was the one that would need to keep the doctors and nurses on a schedule of testing and monitoring. You will need to call, remind, keep calendars of every test your child will need. You will often tell the doctors’ staff when and where and how.

5.       Keep every piece of paper pertaining to the medical records of your child. It will make your life easier if you get every piece of paper ever written about your child’s medical condition/s – as you go. That means following up with every doctor, evaluator, educator to get every lab test result, echo/radiologist report, and each note from every doctor. Specialists will send your pediatrician a letter after each appointment with them and they contain details about your child’s progress…sometimes things the doctor doesn’t mention and it’s also a good way to chart weight and height for baby books.

6.       It will ease some stress to have said paper in an organized format. What works for me is a binder with tabs that allow us to flip to a section at a moments’ notice. The reason this helps is because you will often need to refer to items when talking to doctors and nurses on the phone. If you ever need to file for medical financial assistance (or a charity’s grant) you will need to provide background on the diagnosis and it will save days and possibly weeks not having to backtrack and get them from several doctors. Bring binder to really big doctor appointments.

7.       Adding new specialists to your child’s Care Team. When there is a diagnosis for one thing it doesn’t usually mean one specialist. More than likely you will need to work with a team of several doctors. When you are adding a specialist it will save time and hassle to copy your child’s medical records and send ahead before your appointment.

8.       Consider setting an appointment with a developmental pediatrician. I wish I had known this during the diagnosis span of time with my first child. Our developmental pediatrician was an invaluable resource for me as a parent and advocator with our second. I found that he had the experience of knowing a broad range of children with all special needs from which to draw and helped me work through what should be normal for my daughter, given all of her problems and all of her meds. He and his staff were very helpful in us obtaining early intervention services offered by the state to assist us.

9.       It’s hard to record the journey. Be prepared that it will be difficult in the early days to record baby milestones, etc. in the baby book. I didn’t realize that it would be so hard to start the baby book not knowing how I should handle the sad emotions surrounding the birth (I didn’t know our first child had any problems until 1 year of age). It worked for me to jot down notes of milestones reached or write down things I wanted to remember and throw them into a box. I was ready to open the box about 20 months later. Because we received literally hundreds of cards, notes, emails it took some time to be ready to relive it all to organize them. I ended up creating one very long letter (I call it a Letter of Hope) by cutting out loving, healing, powerful sentences and words out of every note and card we received.

10.    Accept ANY help people offer. It’s hard to do, but accept the help. People won’t think any less of you if you take them up on their offer to let them know if there is anything they can do, I promise. It’s humbling and life enriching to let people help you. In some small way it captures what the human spirit is all about and reminded me about the pure goodness in people. People will want to feed you because that is all they know they can do, and it is wonderful. Ask them for anything that can freeze – because when the food bandwagon slows down it is mighty nice to pull out some soup and biscuits to heat up. And ask them to give you food in containers you don’t have to return – because you will not believe how hard it is to keep up with the little things in life – including the return of casserole dishes to the rightful owners. If someone asks you if there is anything they can do instead of bring you food…THINK OF SOMETHING. Or better yet, keep a list of things that need to be done handy. Go to the grocery store, mow the lawn, run an errand, buy and wrap that gift you need to send, go to the post office, take the car for tires, etc. You will be amazed at what people will do for you. You’ll be able to focus on your child (or older one) because for a period of time you will be spread thin. It is a wonderful gift to be the recipient of such kindness, but I’ve been told by those that bestowed these gifts of time and love on us, that they were, indeed, the ones on the receiving end of blessing.

 Originally posted on Kidneys and Eyes, circa 2005

Be sure to visit site supporter Build-A-Bear Workshop’s blog.

It was an innovative program, with maybe half a dozen parallels across the country. It was the subject of the final chapter of my memoir and subsequently served as a model for similar classes in various parts of the country.

This week, I learned that as of next semester, the Plano Independent School District will be discontinuing the program.

This wasn’t a huge surprise, to be honest. A few years ago, when I met with the district’s director of special education, it was clear that a philosophical change was occurring. It wasn’t that the district wasn’t supporting the use of AAC technology in the classroom. Quite the opposite appears to be the case. When the AAC class was begun in 2005, it contained a dozen students, with a handful of others scattered throughout the district. At the time of my meeting in 2010, there were about eighty AAC users spread out among the schools of the district. I can only imagine what those numbers would reflect today.

So why was this class discontinued? Parents of special education students see it all the time. With changes in special education administrators come different philosophies, and implementation of those philosophies can feel arbitrary to those who have been functioning under the previous system. Also, Plano’s AAC classroom was expensive to maintain, not just in materials but also in its extremely skilled faculty and staff. With a change in administration and a new commitment to a more fully realized concept of inclusion, the decision was made to support the one or two AAC students on any given campus within the parameters of their own curriculum rather than expanding the AAC class on additional campuses to accommodate the growing AAC student population. The special educators on each campus would be expected to support those students and their AAC devices. Specific support from a traveling assistive technology expert would be provided as needed.

I must confess, I have mixed feelings about this. On one hand, the program really was remarkable. I still get email from teachers and speech language students who have read my book and are interested in learning more about how the class works. The biggest advantage that the class offered wasn’t a pedagogical one. The primary benefits were social, providing a safe environment where these kids could learn and communicate in their own weird little way without self-consciousness. Anyone who has worked at all with children and AAC technology can tell you how implementation will succeed or fail largely on how enthusiastically the user buys into the concept in the first place. Getting past the social stigma of using a speech prosthesis is not a small hurdle.

At the same time, I understand that it might have been unsustainable. And I also am intimately aware that the technology may be moving far too fast now for a concentrated classroom program to keep up. When we informed Schuyler’s IEP team that she would be switching to the iPad next semester, we were informed that the school district wasn’t yet supporting the use of iPads as speech devices, primarily because none of the apps were actually developed by speech language professionals. (This is in fact entirely untrue; I believe that pretty much all of the most popular and respected AAC apps were created by those professionals. Well, of course they were.)

But the honest truth is that none of the teachers Schuyler worked with this year were terribly familiar with the technology Schuyler was already using, and as a result, she actually rarely used it. Her ability to make herself understood verbally was seen as progress, and adequate to most of the tasks she needed. Ultimately, I think that was an error in approach, robbing her of a level of nuanced and detailed expression that she’ll need to recapture next year if she’s going to make it. That will come, I believe, and it will do so with new tools, regardless of the levels of official support.

Ultimately, I think the AAC classroom program was one that could have been a much greater success than it turned out to be. But to do so, it would have required an exponential growth that might have been financially unfeasible, and also a much greater flexibility in regard to new technology. I hope that similar programs across the country will be able to solve those problems, because I still believe that the philosophy behind those programs is sound. And I feel pretty confident that it made the difference in my own daughter’s life.

New Members
Patricia joined this week and says she has a nine year old who was not diagnosed properly. Take a moment to drop by her page to say hi along with Miranda who also joined the site this week.

Support Groups
It was also a slow week for the support groups, but as usual, the Organizing… Specialized group continued to chat. There were some good thoughts on the question, “What basic tasks do you simplify for your child?” Feel free to jump in and join in on the chat.

And of course, you can start your own group or jump into any group and ask a question. There are SO many smart and knowledgeable members who can contribute. Have a great week everyone!

Since that How To post I’ve had to take my daughter in to see him for an unscheduled appointment because of strep and a UTI (which is fairly serious in a kidney transplant kid) and my son for a scheduled well visit. I was a little nervous. It can be nerve wracking beginning a relationship with a new doctor and team and hopes were so high.

I’d prepared myself to have to learn the ways of the staff and processes and I’d vowed to be patient while we get to know each other. I knew as we hit “firsts” with them in caring for the kids together we’d have some bumps. I knew I’d have to explain and be patient while they “learned the ropes” of kidney transplant recipients and their unique needs in relation to regular and not-so-regular pediatric needs.

I have to admit my shock to how they have handled the few items. Growing cultures and testing for UTIs without asking, approaching an infection with an appropriate treatment and it with it not working, our new doctor immediately said he wanted to call the transplant team. Again, he did this without hesitation and without me asking. He handed two referral forms for specialist before we left his office.

In leaving the office a few things struck me about the differences between new pediatrician and fired practice. The old practice had a lot of doctors and more layers, which of course means more time to get answers and help. It appears the new doctor handles his own paperwork, based on him handing the referrals — as I’m sure he recognized the shock on my face, as I said, “Now, what is this? Oh, wow, eh.” Our old practice would have made me call the next day and leave a message. He spent nearly an hour with us for the well visit and had great input on a couple of issues. The office is completely electronic. There’s an online appointment, lab and email system. The new office seems to want to take things off TO DO list and the old practice certainly added to my list.

I am stunned at how long we settled with what we were used to with the old practice even though it wasn’t the greatest, but I didn’t know it could be several levels better. We settled for so long and it’s easy to see that now. It feels strange to be on this side, an easier side of something that has been challenging for so long.

I’m guilty of settling. I’m guilty of it because there are so many other things to deal with that changing something when it’s not completely broken seems like so much energy and time, which is something in short supply. Sometimes it’s worth it, and that is something I need to remember.

What other things are we settling on?

Did you see that? I said that without anxiety, without fear and without slurring my words or developing a nervous tic. I must be getting better at this.

We are generally in a good place for this meeting. The biggest news is that Schuyler herself will be attending the meeting for the first time this year. This is a big deal; it has always been our intention that as soon as she was ready, Schuyler should be present, advocating for her own needs and participating in the decisions being made about her future. I look forward to a day when Schuyler drives the agenda for these meetings.

That day will not be today, however. Today, we’re just hoping she’ll stay focused long enough to make it through the meeting without bribery, Angry Birds or a sedative. But from small beginnings like this, great things grow. I’m excited for her.

Like any special needs parents, we’ve experienced bad IEP meetings in the past. Our current situation is actually pretty golden, particularly compared to ones that took place before we moved to this school district. I can remember one of the very earliest, when Schuyler was just beginning to use an advanced electronic speech device. The technology adviser to the district had been making noise about how Schuyler wasn’t ready for such an advanced model, and that more support from the school wasn’t warranted. We knew better, but our attempts to convince anyone else of the potential for Schuyler fell on unreceptive ears.

A few nights before the IEP meeting, I videotaped Schuyler answering questions on her speech device, including many that required her to move through subdirectories. She had only been playing around with the device for about two weeks. Despite the newness of the device in her curriculum, however, she was able to answer questions using preprogrammed answers. She was able to find and identify colors of specific objects (in this case, rubber ducks). She navigated multiple levels and subdirectories in order to find food menu selections, and she was able to put her choices into very simple sentences. Most of all, she was enthusiastic about using the device. She consistently answered questions with the device that she was perfectly capable of addressing using sign language. And she was just barely getting started. Two weeks had given her this much.

The video was convincing; indeed, it turned around many attitudes among her support team, attitudes that I suspect were built on our reputations as annoying know-it-all parents and because of people like the technology advisor, professionals who were supposed to know better, who were supposed to do better than they did. It would have been easy to feel smug in the face of that meeting, and honestly, I did. For a while, anyway. But the more I thought about it, the more it bothered me. Should it really be the job of a parent to resort to videotaping their own child at home in order to be taken seriously? More importantly to us, should teachers be in the position of limiting a child’s options, basing that decision on budgetary issues?

You might be surprised at my answer, at least to that second question. I recognize the very real fact that for most teachers and administrators, the question quite often boils down to exactly that. What can we afford to do? How much can we afford to help an individual student when each resource that goes into one child is taken away from the rest? It’s a real question, and I recognize that for a small school like the one Schuyler attended, that one child’s needs could very directly affect the services that the rest of his or her class receives. It’s an ugly way to look at it, but it’s a fact and we all know it.

I get a lot of emails and questions about IEPs, particularly from parents who are new to the process and may be attending their first meeting. The one thing that I try to give them is an understanding, or at least my understanding, of how the system works. And I do believe that it works, mostly, and that federal law provides more than adequate protection for the majority of special needs students. I give these parents my opinion, which of course is mine alone and based on purely anecdotal information. I tell them that the key to developing a successful IEP is to recognize a few things going in.

First of all, parents need to understand that everyone in that meeting is there for the same reason: to help our kids. I am convinced that even the people who made our lives the hardest did so out of a sincere belief that what they were doing was in the best interests of Schuyler and her classmates. There aren’t very many outright villains at an IEP meeting, although I imagine there are plenty of parents and teachers and SLPs who would be willing to rebut that point. We’ve all got the same interest at heart.

But having the same interest, my second point begins, does NOT mean that we’re all trying to achieve the same things. The two points sound close, and they are, really. The teachers and support staff want to help their children, they want them all to go into the world with every advantage that the schools can give them. Our goal as parents is to help our child get those same advantages. The key to successfully navigating the IEP meeting, in my opinion, is to recognize that because of their finite resources, the best way for the teachers and administrators to accomplish their goal is to spread their resources out as evenly as possible. Or put more indelicately, I tell these advice-seeking parents, they can do their jobs more successfully by giving your child less.

It sounds harsh until you examine the flip side of that. Your job as a parent, I tell them, is the exact opposite. It sounds callous, as if you are saying you don’t care about other disabled kids as long as your own child gets what they need, and it’s not that simple, not at all. Special needs parents are some of the most sympathetic people on earth, for perhaps obvious reasons. But in that meeting, it is the parent’s role as their child’s advocate to attempt to secure the most resources for their kid, at the necessary expense of other kids.

It sounds crass when stated that way. In a perfect world, the village would take care of them all. But the truth is what it is, and the system works when everyone takes their position with confidence and doesn’t take the other side’s position personally. It’s inflammatory, perhaps, to talk about sides, because what ideally emerges out of this conflict is a plan for that child that balances every party’s needs and responsibilities. It forms from compromise, and it works when parents respect the teachers and the support staff, and when the school believes in the parents and takes seriously their instinctual knowledge of what their child is capable of. It resembles an architectural structure, supported from different angles. When the Individuals with Disabilities Education Act works properly, no parent gets to run roughshod over a school, and no school gets ultimate control over a child’s curriculum.

And in the end, everyone is right back where they started, trying to help the student.

Which is not to say that I didn’t wonder about the feasibility of brining a flask to the meeting today. I mean, if everyone plays nice, I’ll be happy to share.

Speaking of proud. We have an incredible number of people who joined this site in the last week. Be sure to check in and say hi to everyone!

New Members
We have two new members who are part of the special needs world and can offer perspective to the many parents on this site. Donna joined and shared a website that shows off her artwork. Donna writes that she has cerebral palsy and a speech impediment and has lived on her own for the last 15 years. Also, take the time to say hi to Sarah. She joined this week as “both a person with a disability, and a professional supporting children with disabilities at school.”

We have a handful of special needs parents who joined this week as well who all introduce themselves with pride. Janel is a  mother of two whose six year old has cerebral palsey, autism, a feeding tube and is non-verbal.

Diana is new to the site and is the mom of four grown kids. (Her “baby” is 18.) She introduces herself as someone with “a Master’s Degree in Special Education and work with young Native American children that are behind their grade level. I raised 4 children, all ADHD like myself.” Angela also joined the site as a mom of two special needs. kids. Be sure to say hi to both of them!

Beth joined as a mom with three kids, two have special needs. She has a big IEP meeting coming up. Be sure to check out what she is working on and give her some support! Anyone who has attended IEP meetings knows they can be stressful!

We have three more new parents whose children have complex medical issues. Amy introduces herself as ”a stay at home mom to the most amazing miracle of my life. He was born at 24w with PVL, CP, CVI, Gerd and infantile spasms. Jennifer joined as a single mom who is caring for two kids. Her 6 year old has mitochondrial myapothy, autsim, SPD, OCD, and a developmental delay. Louise joined the group as a mom of a child who has multiple medical needs and suffers from night terrors and has a tough time sleeping.

Be sure to say hi to as many people as you can!

Support Groups
The Anything Goes group was pretty busy this week. New member, Beth, brought her IEP concerns to the site and asked some questions. Please join in and offer her extra support if you can! Also, about a year ago, Julia asked members to share ideas on ways to keep our kids busy when they need focus. Two more people jumped in with thoughts this week. Feel free to add on with your ideas!

In Organizing… Specialized, Julia shared her special needs storage solution in her household. You should share your ideas too!

There are many other groups with new members. Be sure to check out the support groups, join some if you haven’t lately, and introduce yourself. Heck, share a thought or an idea. As Beth learned, you can get some great insight from the members here!

Also, don’t forget, you can add your blog’s feed to Support for Special Needs. All you have to do is read this page that explains how. Have a great week!

There are plenty of quizzes on the interwebs that illustrate the stress that change can cause. Even the most well-adjusted person can be jarred by enough upheaval. Even happy events cause stress. I changed jobs recently. And while I’m thrilled to be with a company where I have more opportunity and a better culture, I’ve spent the last week coming home exhausted from the stress of learning a new company and a new set of teammates. Since I often deal with stress though sleep (my husband calls me a stress narcoleptic), it’s made for some early bed times.

We had to get there unusually early – 12noon for a 1:35 game – so imagine my concern knowing my son wanted to go but then I immediately wondered how he would do for the day knowing we had leave the house 11:00 that morning. I immediately tried to figure out an exit strategy for when I was there at the stadium. She should be able to stay, I thought to myself but as is true with a lot of families with special needs, a sibling often has to give a little (and a lot) into what is best for their sibling, and that is especially true in public places and doubly true in croweded public places for her brother.

By the time she was done performing and getting to the general admission seats changed in clothing appropriate for hot weather (the signing choir uniform is long sleeve black shirt, black pants) he was ready to go. This did not surprise me. Luckily a friend came to the game and was willing to leave around the 3rd inning to take him with her (what can I say, I have great friends) so my daughter could stay and enjoy more of the game.

Until then my son couldn’t be persuaded into watching the game. So it was, as many times before, my duty to keep him from wandering (his phone wasn’t working) and keep him safe from climbing and exploring crevices (which is his thing). While I was doing this on Sunday, it dawned on me that I spend a fair amount of time doing this exact thing:

This is how I "watched" the baseball game on Sunday

We found a spot in the walkway to the seats, tucked away under a beam. He played on my phone after he was done climbing on the beam above my head and I snapped this picture. A hundred (or more) people passed by us and gave us that puzzled look. You know the one; the one that has them wondering what he did to get in trouble to be sitting out of the game. Or it’s the one that looks at me, back at him, then back at me and tries to figure out exactly what is the problem. We leave them confused most days and that’s okay by me.

It didn’t bother me, really. In the past he has done so much worse there wasn’t even an option for us to stay or even go out like this, if I’m honest. We used to spend a lot of time not doing things as a family that him isolating in the middle of doing something seems like a small price to pay for him to actually attend an event with family.

It’s one of those things You Never Think You’d Do but then you have a kid (or more) that just don’t do things like other people and you adjust. Tomorrow’s adjustment will probably change to Another Thing I Never Thought I’d Do.

We just make it up as we go along and Do Things We Never Thought We’d Do. Because that’s what I do. That’s true for you too, right?

I can handle most honest questions fairly well.  The comments and the rude questions drive me up the wall.

Last year, when we went to the  Minnesota Renaissance Festival, Max spent a good part of the day riding in a stroller, and boy were there a lot of comments.  ”He should be walking!” “Aren’t you too big boy a boy to behaving that way?”  ”Don’t you think he’s too big for that stroller?”  ”What’s wrong with him anyway?”

The thing is,  even if it sounds like a question, you can tell they aren’t really asking.  They are letting me know they don’t approve of how I am handling my child.

The first few times I smiled and explained. I told them how Max has autism.  How he has low  muscle tone and tires easily.  How he needs his space.  That he isn’t being rude.  He simply doesn’t speak much.

I rocked those teachable moments.

But by the end of the I was getting  tired and annoyed and I didn’t hide it well.  ”Autism,” I answered curtly.  ”He has autism,” and I walked on. Leaving them embarrassed, confused and annoyed behind me.

Don’t get me wrong, there were positive encounters that day, but the rude looks and the intrusive questions somehow linger the longest.

Summer is rolling around again, and that means day trips.  Zoos and festivals.  Long walks and crowds.  Stroller season.

So my questions is, how do you handle comments and question? Especially when you feel the person is being judgmental or downright rude?  How do you manage to stay patient?

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Jenny is a single mom to two boys, one with autism and one neurotypical living smack dab in the middle of Minnesota. She blogs at http://www.jitteryplanet.com/ and is on Twitter as @jitteryplanet