Before being in-patient (and treated for an on-going mental condition or three) he would have maybe grinned a fake smile but then he would have put his head back down and stared at anything but another person and maybe he would have eaten or he wouldn’t have eaten. But he would have not connected with another person’s eyes.

In stark contrast to the past, last night he started belly laughing. He could not stop laughing, which only made him fart more, which made him laugh more. I had enough time to put my fork down, walk at a normal pace to get my camera from another room and snap some pictures of him laughing. He didn’t mind me wanting to get his picture, he didn’t stick out his tongue or turn away in disgust.

I have some natural laughing pictures of my boy. It’s been ages since I had a month or more worth of pictures of Gage smiling. A real one at that.

I told Julian later last night that I’d forgotten what it has been like to hear him laugh, really laugh. I’d missed it over the past two years. As to not be disappointed I just stopped believing we’d get him back to a happy child. I hoped for sure and I kept (and keep) moving forward to help him but to a large degree I just accepted that he could be that way forever.

Honestly, I didn’t realize that I’d been doing that until last night. I’m kind of sad about that but obviously it is what I needed to do in order to survive as his mother. I had to love him through being horrible to me, us, hating himself and his life and generally making all of us miserable. I think I figured that if this is how it’s going to be, well, then I had better learn to cope. Now that I’ve had some time away from the chaos (I mean that chaos, not my regular life chaos) I’m starting to have flashbacks about how truly awful it was during the worst.

Obviously I wanted a different life for him and the glimpses of the old, happy Gage are helping me remember what his life was like…pre-death wishes, sadness, tears of a dark, dark pit of despair.

Watching him now I mostly feel grateful and cautious, in equal parts. Because if there is one thing I have learned through the last 11 years is that you never know what is coming around the next turn; a dark corner or the belly laugh.

So anyway, the appointment. Gage and Quinn have been seeing this dentist each since they were three. Dr. Teddy, as we affectionately call him, is the only special needs dentist we know. He just knows how to talk to kids with differences and he thinks about pre-pulling teeth antibiotics for post transplant kids, he also has privileges at the local Children’s hospital to perform dental procedures on kids who are under anesthesia for other procedures.

He’s pretty old but still kicking it and we’ll see him until he quits. And that will be a sad day for many a special needs parents and their kids. Take into consideration that he’s not passed on his skill to another dentist and we’re in sad shape in the city.

Gage is tired of poking and prodding. He just is. Unfortunately because of the nature of Gage’s shut down response to life over the last two years he’s not been into addressing it in any huge way. Snippets of  processing the information and sharing it but not much. Not enough for us to use therapeutically.

So last night when I reminded Gage about the dentist appointment this conversation took place…

Gage: “I don’t want to go.”

Me: “I know hon, but we have to take care of our teeth…I want you to keep your teeth!”

Gage: “I hate it though, he makes me choke!”

Me: “What makes you choke? Because we can talk to Dr. Teddy and I bet he will try to make it better for you.”

Gage: “The water squirt thingy makes me choke because it goes straight in my throat like this (makes gurgle) and I don’t like that sucker thing either, I don’t like the way it feels.”

Me: “So how about this? How about I write those things down and give to him as a reminder AND we talk to him before you you even sit in the chair and see if we can come up with a solution with him? What about that?”

Gage: “Okay.”

So I made Quinnlin go first (she’s got no problem with Dr. Teddy) because Gage asked and to give him a little more time to talk to me if he wanted. I pointed out the notes I wrote on Gage, said he’d had a recent hospitalization (pointed to my head and twirled my finger). When it was Gage’s turn I put Quinnlin in the waiting room and brought him…

Me: “Dr. Teddy, before Gage sits down he wanted to make sure I talked to you about a couple of things. Okay? He’s really stressed out about this appointment and he told me it is because he chokes when you spray water in his mouth and he asked if you can warn him and give him time to close his throat. And also, he’d rather spit then have you use the sucker thingy.”

Gage: “Yeah. (Gage then demonstrates how he closes his throat) I don’t like it! I makes me choke and I don’t like it at all!”

Dr. T: “Oh, I’m sorry about that and I am so glad you told your mom and that you are telling me, because of course!  I would be HAPPY to tell you about the water spray and vacuum and in fact, why don’t we see how LITTLE water we can use and how LITTLE we can use the vacuum! Would that be okay?”

Gage: “Okay.”

Then I have another conversation to Gage to reiterate that he has to use his words when he’s uncomfortable or needs a break and Dr. Teddy will listen to him. You know what? It wasn’t a horrible appointment. Gage did great. Said he didn’t choke once but didn’t want to admit it was okay. Said something about still not liking going to the dentist.

Gage and Quinn then went to pick out surprises from the vending machine (by tokens) and Dr. Teddy thanked me for how I handled the situation and said something about what a good mom I was to Gage and Quinn. He said how he was always so impressed with how I am helping the kids by really teaching them  how to work with doctors and that through everything we’ve been through he was always so impressed with my mothering.

And then I started crying.

I thanked him for saying something, he handed me a tissue and I left with the kids. Told Gage all afternoon how proud I was of how he TALKED and USED HIS WORDS (for crying out loud) to let me help him with his appointment. I said, “I think it worked out quite well, don’t you?

In perfect Gage form he said, “Yeah, but I wouldn’t say it like that!”

I’m hoping today he found a little bit of his voice.

It’s from the inside or the inner circle where you know something is off, not normal (by society’s standards). At age 11 he can’t really manage anything on his own, not relationships, home work requirements, reports, simple worksheets, nothing. He has to have one-on-one help for everything in his life both school work and personal. He isn’t able to take responsibility for anything really as we have to tell him to do everything.

Gage is managed like you would not believe. He is walked through everything in his life. I want him to be independent. I pray for his independence. I work everyday towards his future independence.

But I wonder if that is fight I won’t win because it’s not possible.

I wonder if Gage lacks something that he needs in order to be completely independent. For sure he is an independent thinker on some of the things that interest him. But those are not really responsibilities like school, home work or life skills.

It might not be a proper question to ask right now at this time in his life. He’s newly medicated for symptoms that were holding him back, he’s in therapy that might work a little bit better now, and he’s working better at school. So who knows?

Maybe all boys his age (his is adjusted because of delays so he is a year behind) need what Gage does but I doubt it. We can’t just hand him a worksheet from school and tell him to do it. We have to sit with him, encourage him, plan around a mini-meltdown (two today sent him crying to his room), then we have to hold our tongue when he ignores, is disrespectful (ignoring this even is part of the behavior plan for now) or does something irritating (which is often, ohlemmetellyou).

But he has a light somehow,  remarkably so, because for what he has been through you would think it would be dark forever. Sometimes you can even see the light. Can that light grow into independence?

Only time (and love, medication, therapy, a group of teachers, patience) will tell.

I’ve been at the beach all week working. I’ve been working on a few projects and working at work and having a splendid time.

One of the things that I do well is take time for myself and I have an amazing husband who wholeheartedly supports my need to recharge my ever-depleting batteries. He’s never once not been supportive of my need to volunteer (which strangely gives me more energy), to be creative (an entire room in our house is devoted to crafting), or to maintain friendships (time away from him and the kids) because he knows how much those all mean to me.

The beach is one place that I find my center and when I am here without my kids I feel like the center I’ve found again will stay balanced a little while longer than it would if I were without them somewhere else.

This trip has been a planning time for me to think about and brainstorm about some new things on the horizon for me and it was timely to come when it did. Last year when I planned this trip I knew we’d have Quinn’s transplant behind us but I didn’t know some other projects would come into focus or that I’d be planning some different things this year for myself personally.

It’s been good to do that; to focus on something besides failing kidneys and meds and school IEPs this week and I’m grateful to have the chance to do it because Julian makes it possible.

So thanks J-man. You are an awesome husband. And each time I was on the porch of the little rental house (brainstroming/thinking/relaxing) I thought of you. Well, most times anyway.

Remembering the BEACH where you played

When you worked TOGETHER

because you so RARELY do

I ETCHED it in my memory

Always hoping that one day you will work in SYNC again

]]> http://theotherjuliaroberts.itx.net/2010/03/friday-photo-fun-98/feed/ 0 http://theotherjuliaroberts.itx.net/2010/03/friday-photo-fun-98/ http://feedproxy.google.com/~r/feedburner/eCui/~3/z6_mMPo1NhI/ http://theotherjuliaroberts.itx.net/2010/03/dear-teachers/#comments Tue, 02 Mar 2010 04:01:52 +0000 Julia http://theotherjuliaroberts.itx.net/?p=4110 My name is Quinnlin. I am good at multiplication.

It is hard for me to look for things far away. If things are moving I may miss them because it takes me a while to find them.

Sometimes outside I play with my friends and if they get too far away I can’t find them. When I’m outside I need to know where things are like steps or signs or things I might bump into or trip over.

I use a marker to keep my place when I read. It helps me if words or math problems on my paper are more spread out so I can find them easier.

I have an eye condition called ocular motor apraxia. This means that sometimes I want my eyes to move, but they won’t. This makes is harder for me to find words on the board, or a problem on a math paper, or a word on a page in my reading book. It helps me sometimes to get closer to the board. You can help me by telling me where things are: at the top of the page, in the middle of the board, under the picture.

Sometimes I turn my eyes or my head to make it easier to see something. When I take a test, I mark my answers on the test. I don’t bubble my answers on another sheet.

I have an IEP*. That is a plan that will tell you a lot about me. Please read my IEP, especially the first page and the page called Student Supports.

Thank you,

Quinnlin

*Individualized Education Plan

This letter was written by Quinnlin and her vision therapist (who consults on Quinn’s vision needs with her teachers). I have never seen this done before. This is the vision teacher’s recommendation and I think good for all kids to have for their new teachers in a new school year. We may or may not modify it before the next school year starts.

One month shy of 3 years ago Jody gave a Gage a kidney. Five months ago today Cheryl gave Quinn a kidney. Together the two of them have given a lot of months of kidney function to my kids.

The numbers amaze me sometimes, honestly, they do. Because it’s been a long road for the family. Gage, while doing better now, has been a mess for a couple of years. I’m so thankful that during that time we weren’t dealing with kidneys that didn’t work or dialysis in addition to the crazy. Because, sometimes, as we like to say, it’s just too much. Quinn’s transplant happened in the middle of the escalating problems for Gage but it could have been so much worse.

Jody and Cheryl raised their hand to help because, for them, it was the right thing to do. Not everyone does, but more people can. The overwhelming theme that the two of them came back to as we moved along in the journey was that they wanted to give Gage and Quinn a fairer chance at life, which had already handed them several challenges. They decided, for that and many other personal reasons, they wanted face some risks and sacrifice an organ to all my kids. But they really just wanted to improve their lives.

When I think back to the time when we learned Gage couldn’t get a kidney from either of us parents the feeling I remember was fear. Fear of the path ahead that could prove or not to be even a bigger challenge for my boy. Over the years many, many people said they would donate a kidney. When the time came we had 5 people in line that had talked to the transplant coordinator. Four were in town, one out of town. Five people and 4 who stayed in line when Quinn needed a kidney.

We knew Cheryl matched Quinn because she was 2nd in line to donate to Gage. Over the nearly 2 years between Gage’s transplant and Quinn’s testing she would periodically check-in with me and let me know she still wanted to donate. She gave me a great gift throughout the months of waiting. She let me believe that it would happen; that she would be able to donate. She let me focus on Quinn and her needs and Gage and his needs and not have to focus on where we would find a kidney.

Looking back at the 4 year journey to their transplants I marvel at our family’s resilience. I’m proud of my kids, proud of my marriage and proud that I survived with my sanity (we talk a lot about this) in tact in a way that has allowed me to grow and learn from the experience. I’m happy that our family is still surviving, together.

Jody and Cheryl gave us that, as did the other potential donors (S, B & C) because by being willing – even before testing had occurred – we felt like they would each get a new kidney. We were not without a lot of hope.

Our donors and potential donors are like my hope makers and reminders. Their willingness to give so freely is my reminder that others can make a difference in our lives so it is a good reason to always share our story. And maybe, just maybe, if I keep sharing too, that others will benefit.

Thank you Jody and Cheryl for sharing. For sharing your love, your kidneys, your families and your hope with me. Your lives and your example of doing good and helping others continues to amaze me daily. Each time my kids wake up and are alive I think about you two.

We love you and your kidneys – all of them.

As a daughter with a daughter I love to watch their relationship grow. Because I know that with each word said, each hug delivered, Daddy is instilling how we want a boy then a man to treat her; with respect and concern and love and consideration. Always hoping she believes that she deserves the best there is to offer and not settling for anything less than the man her father is.

Thanks Auntie Carol for the styling of the daughter of this duo.

]]> http://theotherjuliaroberts.itx.net/2010/02/friday-photo-fun-daddy-still-has-it/feed/ 11 http://theotherjuliaroberts.itx.net/2010/02/friday-photo-fun-daddy-still-has-it/ http://feedproxy.google.com/~r/feedburner/eCui/~3/sY6yMSrhkAo/ http://theotherjuliaroberts.itx.net/2010/02/the-reason-for-the-secret-time-out/#comments Thu, 25 Feb 2010 05:10:56 +0000 Julia http://theotherjuliaroberts.itx.net/?p=4090 Gage was overtired Sunday due to an overnighter at the G’parents and the unfortunate desire to sleep with the dog because said dog keep him up in various intervals throughout the night. “

Which is fine, really is it, except when it’s not fine.

Gage loves his sleep, always has. Yes, it’s true, hold on here…WE SLEEP TRAINED HIM when he was a baby (can’t use that excuse for his behavior since we also sleep trained Quinnlin) and happy we did. We’re routine people, and more so when it became apparent that Gage does better with a routine he can depend on. So that broken up sleep on Saturday night? It messed with his attitude as it does with most of us when we are lacking good sleep. Quinnlin also had her share of attitude problems because of a weekend camping trip for Girl Scouts but again, with the tiredness.

Sad thing  is that it carried into Sunday afternoon. The kids had play therapy (started back up for Gage and Quinn’s first appointment) from 1-3 and after that the attitude problem didn’t improve for him. So around 5:00 when I realized it could escalate into hell I decided to get both the kids into bed early. Like early, early. We moved our evening routine up nearly 2 hours by having dinner at 5:00 and in bed by 6:20.

Gage asks, “Why is it so light out?”  Julian replied, “It’s that time of year.”  No, he can’t and doesn’t really pay attention to time…we like to say that is ONE THING IN OUR FAVOR with a kid with developmental delays.

Sadly the early bedtime didn’t help for all of Monday. So the end of the day he was having trouble with frustration at a hard (for him) task and the shutdown began. Monday evening wasn’t much better so there was a shutdown during homework of which involved him having a mini-meltdown (honestly, compared to you know, a MENTAL HOSPITAL BREAKDOWN ADMITTANCE, it was a walk in the park) and me trying to talk to him, put him in time out, and well, it didn’t go well. Not at all.

Well-rested meant that we should have seen improvement but Tuesday brought tiny shut downs. Luckily I had an appointment with our behaviorist for a Gage Refresher! Where  the good doc reiterated and reminded and confirmed and validated me about ignoring the bad behavior. When he shuts down it usually involves him running to his room with a trail of destruction on the way…shoes thrown, chairs tipped over, yelling, crying. So in discussion with the doctor we decided that when this happens WE WILL NOT follow, talk, try to reason, punish or anything — this means NO REACTION unless it is true aggression. This goes against every parental muscle, let me tell you. We decided together (the good doc and I) that these shut downs and running away are kind of like time outs anyway. So we’re just not going to call them that to him (cause he will not sit in time outs anymore). It’s like our secret. He storms out, it’s a – self imposed – time out.

The important part of this secret is to know that we have to come back to the task at hand; to the thing that set him off in the first place. Which on Monday night the shut down lasted about 20 minutes, then we got back on track and finished what we were doing (draft for a book report) and we had a good evening.

Today after school he worked on his computer homework (online) and we started on the final of the book report there was an incident. He and Quinn got into to words, a pencil was thrown, a stomping off that involved a chair pushing over and plant leaf pulling and up to his room he went. I did not say a word, just looked at the clock and started my 5 minute secret time out and waited.

Then I said, “You ready Gage? Because I’m ready for you!” Imagine the happy place inside me, where that came from.

And it happened. He sat back down, calmly, not sulking and worked for nearly an hour on writing, which is one of his many challenges and has cause many a shut down. Not tonight though. He did some of his best work and he was proud of it. He also did a project (that involved writing) for scouts. That doesn’t happen very often and it was nearly unbelievable. Today we also happened to tweak a med (+) so I don’t know if it was that or how we are handling the shut downs, but it was so much better.

Post shut down, an evening of typical homework and cooking dinner and laughing? Well, that’s what I thought it would look like before I had kids.

I know it sounds to the parent with average kids like this is a small thing; our 4th grader completing a book report (modified to be easier, even) without tears and yelling and whining between us and him but it really is remarkable. I feel like new meds and tweaks in meds and more calmness is bringing more calmness. He’s not functioning like a typical 11 year old (obviously) but he is functioning better.

There is a calm in the storm and I am grateful for it but I am not stupid enough to believe that this is our normal and it may never be, but I will take it for our normal today.