Sunday, February 1, 2015

The sibling connection

Lately conversations with Alvin's little sister Elliot have gotten a little more serious. She has started to ask more questions about why Alvin is the way he is and why he sees certain doctors. She tells me sometimes in the car how she wishes we could go places all together but knows we can't because of how Alvin will act.

Tonight was another one of those moments. While tucking her into bed she asked me why Alvin won't go to camp with her at The Little Gym. I explained to her that years ago when he was in class there some of the kids picked on him. The teachers did what they could but in the end Alvin had his feelings hurt and hasn't wanted to go back since.

Elliot's first response to this was a very simple comment that she wishes she could do class with him because she wouldn't let the kids pick on him. She would make sure he was ok and having fun. She then told me how she was going to tell him about all the great things that happen at camp and how she would be there for him to make sure no one was mean to him and that would make him go to camp and have fun with her.

The conversation continued for a few minutes and basically it came down to one common theme. She understands that we are all different, but her brother is just a little more different than others but that's ok.

Remember in all of this that Elliot is 5. She turned 5 in October and there are many days I have to remind myself of that very fact. She has nights like this where I am in shock. She speaks so clearly and with more compassion for other kids that are different. She acts at times older, partially because she is developmentally about a year or more ahead while Alvin is a year or more behind.

Don't get me wrong though, when Elliot gets around other kids her age she still has a blast and can completely act like a 5 year old girl in kindergarten!

Talks like the one tonight remind me why I keep her in mini jets at The Little Gym and why I let her go to camp. The gym and camp are at times her escape. She has expectations on behavior, but for the most part she can just be her silly self.

In the end what happened tonight just validates one of the things I tell people. Normally when someone finds out about Alvin they tell me how sorry they are. My typical response, I'm not. My kids (Sara, Elliot and Madilyn) are all growing up with this and have a much better understanding and compassion for people of all abilities than most kids their age. So while things are tougher for us than most, all of the girls constantly prove that growing up with a brother with a disability is nothing to be ashamed of or sorry for.

Sunday, July 6, 2014

Why I let me son quit playing a sport he loves

From about as early as I can remember I played sports. When I was really little I remember doing tap, ballet and then even gymnastics and baton twirling. Nothing really fit for me until I started playing softball. I started playing when I was about 7 until I was probably 11 or so. I remember playing ball with the boys in my neighborhood and generally just loving the game. Playing softball helped me make friends and kept me active outside of school.

When Alvin took an interest in baseball I was hopeful. My son who knew the rules of the game at 6 years old and could tell you who a player was simply by watching him throw had found the game I loved when I was a kid.

The first year of tee-ball was a success. While Alvin had a hard time at first watching him learn to love the game made it all worth it.

This year when the time came to register I was concerned. Due to his age he would be moving up to coach-pitch baseball. I was concerned about the increased skill it would take for him to keep up and also worried about the social aspect. These kids would talk more and expect Alvin to carry on conversations with them. Even with all our concerns we agreed tp let him play understanding that we would once again be put in the position to advocate for our son to be able to do the same things the other kids did so easily.

The first few practices started out great. Alvin picked up hitting the ball well and did the conditioning (stretching, drills and warm-up running) with only a little guidance. He loved playing all the positions he could and had even come to understand that he wasn't allowed to play catcher because of his "C" on his head.

Then things started to change. The kids started to catch on that he was different. The coaches brought out different pitching equipment and Alvin couldn't keep up with the changes. He failed to hit a ball in the rest of the practices and never in a game. I started to see the kid that used to love playing the game doing everything he could to get in trouble to not go. One day he started acting up and told me that now he couldn't go to his game because he was in trouble.

This was the clue that something was up. It all boiled over in the last game he played before we removed him from the team. Close to the end of the game on a rainy and dreary day Alvin was once again up to bat when he was hit in the hand by a pitch in the hand. He immediately got upset and prepared to take his base when he was told not to. In coach pitch rules the player simply gets another try and does not get to take his base. He was crying and the other kids thought it was funny.

Alvin was so confused and I could see it in his face. He was crying and just wanted to leave.

It was that day that we made the decision to let him quit.

The kids picked on him at times and the only thing he was learning was how to avoid being bullied. That night I got in touch with the Monroe YMCA and started to make a change.

The next few weeks of starting a new program were rough. Things had drastically changed. There were now many people on the field and the social aspect was frightening to say the least. We met so many great volunteers during the season and by the end Alvin would get to the field early and immediately start pitching.

The last game was the where it all paid off. Alvin had been through a lot and in the past month and a half not been able to hit a ball on his own. Finally in the last game Alvin got not only one, but 2 hits by himself. His confidence was back and the look on the volunteers faces was wonderful. At that point all of the volunteers had heard his story and knew what he had been through. He and all of the other kids were out there to have fun and do their best.

The moral of the story hit home though with Alvin's sister Elliot. Having to explain to her why Alvin was quitting was tough. We don't believe in letting either of them quit just because something is difficult. The goal is to do your best (and with sports at their age) have fun doing it. At 4.5 Elliot learned another hard lesson as well. Not everyone is going to accept her brother or kids like her brother the way we do. She learned that we will fight for all of them when the time comes.

So where are we now? The YMCA has a few other adaptive sports coming up such as bowling and basketball. Top Soccer should also start in the fall as well.

For us, things have changed. We always had hoped Alvin could play "normal" or "mainstream" sports. At this point we know that just isn't going to happen. While he continues to make great strides socially and physically he just isn't ready yet. So for now we let ourselves grieve at the new discovery and we move on. We move back to acceptance and letting our goofy kid learn to be himself and have a great time doing it.

Saturday, February 22, 2014

The Special Needs Spidy Sense

One of the things that W and I seem to have developed like most special needs parents is that ability to sense something is up with another child or adult has more going on than it might seem.

Two weeks ago was engineers week and with my current job I have the opportunity to go out and present to local schools and talk about what it means to be an engineer and do a small design competition. I've been doing this for 3 years in a row with the same 2 guys and its always fun. This year though during the second class we were presenting at one certain boy caught my eye.

The second class we taught was twice the size of the first and as the kids came into the library  a young boy caught my eye. He was socially more awkward than a the other kids and seemed to be a bit of a loner. Even the table he sat at the kids didn't acknowledge him much.

During the presentation though is when it all clicked. I called on the young boy to answer a question and as he started to answer the other kids in the class began to whisper. He was instantly frustrated and said he couldn't think with all the other kids talking. Without blinking an eye I told him to think about it and just raise his hand when he remembered and I would give him a turn to answer the quest. After just a minute he was able to collect his thoughts and give his ideas on the topic.

Once we got the activity started I mentioned to one of the teachers that I felt bad for him. I figured something was up but didn't want to say anything too straight forward in the chance that I was way off base. Sure enough the teacher confirmed that he has autism and is in a special program that allowed for kids on the spectrum to be in class with typical developing kids.

Later as we were leaving the school the senior manager presenting with me asked how I knew what was going on with the boy. I told him about Alvin and he seemed so impressed. To me it was just second nature to just give him a minute to collect his thoughts but to manager I was with it was far from normal. He then told me he as panicking when it happened because he didn't know what to do.

I guess when you live with a child like this you just have a sense when something is up in others. W and I have always just been able to feel things like this out when we are out in public, but this was the first time I've dealt with it directly in a social situation that wasn't geared for special needs kids.

Wednesday, January 1, 2014

Therapy Cat

Back in February we had a little incident where Alvin let our 12 year old cat out of our sliding glass door one morning and we never found her again. I was heartbroken because we had Katie a female calico since Will and I met and while she was old and temperamental we loved her. Back in early August our good friend brought over about 6 balls of fluff. She had 4 kittens that were ready to be adopted and had 3 that still needed a home I wasn't completely ready for a new cat, but I turned the decision over to Will since he would be home with it more than I would. That day Schrodinger joined our family. He was the last one out of the kennel and the first thing he did was curl up on Will's chest.
Their first meeting
Surveying his new territory

What has transpired over the past few months is amazing. Alvin wasn't one to show affection to anyone or anything. He was always reserved with his emotions to some degree. When we got our dog Ophelia we thought she would be the perfect companion for him. While she has been a great addition to the family,she didn't bond with Alvin the way I expected.

The cat has suddenly changed things though. From the time of his first vet visit Alvin started showing more compassion and attachment to this cat. When we took him to get fixed Alvin was comforting him the whole time and showed compassion that we were not expecting.

Playing with the dog
 The cat  himself fits in well. He plays with Ophelia all the time and keeps her on her toes. With the kids he is gentle and loving.

What really got me about this cat was when Alvin was hospitalized last month. I've never had a cat that was horribly affectionate or social with us. They were aloof and didn't seem to care much if we were around or not.

When Alvin was in the hospital Schrodinger just seemed confused. The boy he slept with part of every night was gone.

Once Alvin came home he was beside himself happy. Alvin wasn't allowed out of his sight most of the night and as soon as he went to bed the cat was right beside him. This cat now even has a small bed in Alvin's bed and he uses it. Most days you can hear Alvin walking around saying "I love this kitty."
He loves this kitty and I think the kitty loves him back

Never before would I have thought that a cat could be a therapy animal but I have been proven wrong. The cat follows Alvin everywhere and slowly but surely seems to be helping Alvin come out of his shell emotionally. An example of this was just last night he asked to have a sleepover in Elliot's bed. Granted this only lasted for about 20 minutes but he snuggled with Elliot. Elliot was beside herself happy that he wanted to and cried her eyes out when he left. 

So I guess I've now come to realize that any animal cat, dog, horse whatever can benefit a child with autism or other brain disorder can really help as long as the child/adult has a bond. In our case it just happened to be a furry little grey fluff ball that needed a home.

Tuesday, October 22, 2013

Back to school and back to less sleep

So after Alvin's dental surgery it was time to start school. Alvin's sleep habits over the summer had been gradually getting worse but we figured once school started it would get better again, but they never did.

Even with school starting things just have not been getting better. It hasn't been uncommon to see him up at 3 am and not be able to go back to sleep. He then would have a full day at school with reading and math, both in his regular class and resource room. By the end of the day he came home and just melted down. Things continued to get so bad that I started to video the episodes every afternoon and evening. While we knew he could do the homework, he was so exhausted that he mentally couldn't focus and his way of dealing with it was to scream and cry.

The screaming and crying episodes gradually kept getting worse until he finally started lashing out at me. The final straw for me was the week before Elliot's birthday he hit me 5 times. That's when I knew it was time for us to discuss it with his complex care management team.

The same day we were scheduled to meet with the CCM team he actually had to miss school. The night before he didn't sleep at all and was pretty on edge. Once we arrived at the meeting with the lead pediatrician on the team and she saw the video there was no doubt left in her mind. We had been working for the past year on how to regulate things at home and nothing was really working so it was finally time to consider medication. Part of me was ready to hear this, but part of me wasn't. I never wanted to have to result to using medication to control his behavior but for all of our safety it was time.

The next week was spent by the pediatrician at Seattle Children's talking to not only our pediatrician but also a pediatric neurodevelopmental doctor. The big concern was to find the right medication that would control his out bursts and help him sleep without making him a zombie.

Finally after almost a week of waiting trazodone. Its an antidepressant drug used to regulate serotonin levels in the brain. We were told we would start out at a low dose then increase as needed to get the desired out come or so we hope.

Now its been almost 3 weeks and some days it seems to be working while others not so much. He still has his (at times violent) outbursts that are normally directed at me. We still need to give it a little more time though until we say the dose isn't working.

The other issue that we still need to look into is getting more services through the autism center. His pediatrician at Seattle Children's thinks they could be doing a lot more and we need to follow up with them and see if they have any other areas that could help him.

Other than these issues school seems to be going well. I have an IEP meeting tomorrow and parent teacher conference next week to discuss his academic progress and how he is transitioning to the new school year. The initial feedback I've gotten from his general education teacher is that he knows the schedule better than she does and always reminds her of when he is supposed to be doing something else!

Thursday, August 22, 2013

Dental Surgery Update

Yesterday was the day 6 months in the making. When we last met with the oral surgeon and saw the issue we had. Alvin had 2 extra adult front 2 teeth. While having one extra tooth isn't all that rare, having 2 the way he did wasn't something she sees every day.

We got to Seattle Children's around 6:45 and got checked in. By about 7:10 we were back in a pre-op room getting ready. By getting ready I mean we were doing a lot of waiting between nurse and anesthesiologist visits. By about 7:45 we had seen the nurses and met our anesthesiologist.
getting ready to go back
On a side note one of the things I thought was quite funny this time was how many doctors and nurses I recognized. While we were waiting in our room I saw quite a few nursing assistants, nurses and anesthesiologist that I remember from past visits. Just another sign that we have been there in and through that process far too many times.

We tried to have him take a pre-medicine to help him relax before we went back but this time it back fired and he threw up all over the place.

When we finally went back he was anxious as expected. First elmo got some of the medicine, then bear and then Alvin laid down and fought a little but did  pretty good going to sleep. The anesthesiologist and nurses were all impressed that he eventually relaxed a little and didn't even cry.

When surgery was over I met with the surgeon she told me what the damage was. His first set of adult teeth were deformed and she went a head and took his baby teeth as well. The issue now is that his next set of adult teeth aren't completely formed yet. It could be another 6

months or longer before he has front teeth again! So once again we are on a watch and wait prognosis and have to follow up with his dentist in a few months to check and see how he is doing.

When I saw him in recovery he looked pretty rough. His mouth was swollen and I could see all of the stiches in his mouth. The staff in the recovery room did all they could to comfort him, but he was so upset that nothing helped. His pain was under control but he was so distraught he couldn't stop crying. Finally the nurse decided he was stable enough to go back to a room and get dressed and recover there for a while. Once in his normal clothes he felt a little better and started trying to drink some apple juice. Then he started throwing up blood which just made things worse. After about 45 minutes in recovery he finally started to keep some fluids down and we were sent home with pain medicine.
recovering after surgery.

Now at home he remains pretty swollen. His mouth looks really rough and he is supposed to be on a soft/ no chew diet. This hasn't been easy for him since all he wants to do is eat everything in site and just avoid his front teeth.

Sleeping at home with his bear after surgery
Day 2 and you can see how swollen he is.

So now we watch and wait. School starts in 2 weeks and with any luck he will be back to normal by then.

Sunday, August 18, 2013

The long awaited meeting and next steps forward

A few weeks ago we finally had our 9 month long wait to meet with the Seattle Children's Autism center. This was a meeting that was talked about in October of last year when we first met with the complex care management team. The biggest fear I had with this meeting was that somehow the doctor/nurse practitioner we saw would look at Alvin's case and determine that he was not on the autism spectrum and we would begin a new fight to keep services that he gets during the school day.

First off the autism center itself is very nice. From the moment you walk in things are much different than any other doctor's offices we have visited. The lights are dimmed and the ambient noise was pretty low. All efforts are in hopes to make it a calm and inviting area for the kids. There is even a separate waiting room if needed with no noise and low light.

The meeting itself went well. We talked with a nurse practitioner for about an hour and a half going over everything from his initial diagnosis in Alabama to his eventual discovery of hydrocephalus. In the end after reviewing all the evaluations and reports he concluded that major additional testing wasn't needed. He said Alvin actually falls more on the higher functioning range of the autism spectrum and not really Asperger's at all.

The main recommendation that came out of this was for a new speech evaluation and further speech therapy. Since Alvin will be attending a mainstream 1st grade class in a few weeks it is important that he be able to communicate with his piers and teachers well.

Just this past week we met with the speech pathologist and once again Seattle Children's is on top of things. The speech pathologist was great with him and in just a few minutes discovered a motivating item for him (iPad) which helped him complete the test questions and on short breaks he got to play any game he wanted. She was very clear as to what the expectations were and he seemed to warm up quickly to her and completed the testing with no issues.

The end result was that she felt he needed a lot more assistance with his speech, which we basically already knew. He is age adjusted for speech about 3 to 3.5. He scored very well in answering what words were the opposite of others but when it came to answering questions about a story with no pictures he had a very hard time.

So the next step is to fight with our insurance to get them to cover the increased need for speech therapy. He is only allowed a certain number of visits before he has to be re-evaluated or they see no need in covering it.

Also this next week is his big oral surgery. On Wednesday we are headed back to Seattle Children's to have his baby top front 2 teeth removed and his first set of adult front teeth that are extra. They are going to do x-rays right before the procedure to be sure that is all that is going on and hopefully catch everything in one shot. We know already this is going to be a tough surgery and he will be pretty uncomfortable for a while. I've been pretty open with him about what is going on Wednesday and so far he is handling it well. I also have a good plan with the anesthesiologist to have him take a pre-medicine to relax him before he goes back to the operating room to go to sleep. This should help with his anxiety like it did last time and hopefully make it overall much easier on him to handle.

Right now we know what we are up against and have plans in place to do the best we can. From keeping his favorite bear and super hero cape close by to having plenty of scrambled eggs, pudding, yogurt and ice cream at home for his recovery I think we are as prepared as we can possibly be at this point.