Thursday, April 18, 2013

1 year later

April is Autism awareness month and yet for me this week all I can think about hydrocephalus.

One year ago this week we met with a neurologist who showed us Alvin's MRI scan and told us about the cyst in his brain. He said not to worry but we would be referred to a neurosurgeon to see if surgery was needed on the cyst or not.

Two days later we got the call from neurosurgery at Seattle Children's Hospital neurosurgery department saying that he actually had hydrocephalus and that he would probably need surgery the next day.

I remember distinctly the day we heard the words hydrocephalus. The rest of the day and night W and I spent hours  researching on line what the treatment options were and trying to get in our heads what was going on.

On 4/20/12 we met with his surgeon Dr. Lee and started on this journey. She went through the options with us and suggested an ETV (endoscopic third ventriculostomy) instead of a shunt to treat his hydrocephalus. She said he may need a shunt later in life, but with a high failure rate, if we could do the ETV and it work we would have a better overall outcome for him. The news of the surgery followed a flurry of activity of an eye exam to be sure his optic nerve wasn't compressed then signing forms and prepping for surgery.

On 4/20/13 Alvin will play in his first tee ball game. While some parents will be there and hoping that their kids make a good play or hit the ball into the outfield, our thoughts will be in a different place. We won't be concerned with the things that other parents are worried about. Instead the thoughts of how far he has come in a year will be more on our minds.
One year ago he was having major surgery to alleviate the pressure in his brain. One year ago he was in the ICU and our world had just been turned upsidedown. The last year hasn't been easy. With a site infection and numerous scares from his inability to communicate have kept us on our toes. Both W and I are constantly on the lookout for the signs that things are going wrong.

Now one year later he is playing a game he loves with normal kids. He amazes me all the time at how far he has come in the past year, but right now it hits the hardest.

Saturday, April 13, 2013

The dark side

Lately I have been wanting to write about things but with the challenge of a teething baby, a normal 3 year old and dealing with all of Alvin's challenges the words have been slow to come and the decision to talk about things has been hard.

Alvin in general has been doing well. He is still catching every bug out there and his dentist issue is just odd, but then again what's new. The dentist found out that he has 2 extra front teeth that will need to be removed some time in the next couple of years and will need to be followed closely by a oral surgeon to be sure they are removed at the correct time.

What I want to talk about now though is something that I haven't really mentioned before. The quote "Will you love me even with my dark side" comes to mind in what we have been dealing with things lately.

Back sometime at the end of last year as Alvin became more verbal his outburst also became more present. These outburst are normally confined to home and normally happen when he's stressed or had a hard day.

These outburst I'm speaking of are only directed at myself and husband in the form of screaming at us, hitting or kicking. They are never directed at other kids or his sisters, but just us. He gets frustrated with something as simple as not being able to find a lego figure or Elliot taking one of his many hot wheel or just singing.

What ever the reason the outbursts are never seen as ok and he never gets away with them without some form of punishment (losing his leap pad, going to bed early, ect).

I do though however understand them. He gets so upset and angry when things don't go his way and he can't deal with the change. He knows that he is safe at home and with us so that is when he acts out.

So why am I saying this, partially because it needs to be said. This isn't a part of autism that is talked about much and it needs to be said. Alvin underneath it all is still a good kid. He loves his siblings and dog and loves to play baseball.

Alvin though has started to understand that he is different. Kids in tee ball try to talk to him, but he can't. He wants to play/interact with other kids at times but struggles to figure out exactly how to do it.

So what is next? The next step is to talk to his complex care management team about it and push to have the new autism evaluation completed as soon as possible. With the autism re-evaluation completed we can be referred to a specialist who can help us and him deal with the changes that we are beginning to face.

So while we may be encountering his dark side right now we are far from being done with the fight to help him overcome it.

Monday, April 8, 2013

IEP and extra help

So I survived another IEP with my sanity in tact! The meeting itself went pretty well. The biggest success they mentioned was that he was on track with his math skills and at or above level for all academic math concepts.

He is steadily making progress with his handwriting and coloring but still needs help to color the full areas. The team agreed that he is very aware of where his strengths and weaknesses are and since handwriting and coloring are weak he tends to do them as fast as possible and with the minimum amount required.

He is grasping all spacial concepts in 3D but has a hard time translating them to a 2D world.

He is also having issues with story time. He will sit and listen but has a hard time retelling the story or answering questions regarding what he just heard. He needs a lot of work in this and is just making slow progress. Luckily I was able to get him into a group speech therapy session one day a week that is going to work on just these major weaknesses. It will go from the beginning of April through the end of the school year and will hopefully provide just a little extra help.

The other area of concern is his social skills. If he is playing in an area and another child comes over, he will stop what he is doing and leave. Other kids typically try to interact with him but he can not carry on a conversation with them. The team recommended some more testing to quantify this gap and make sure it becomes an integral part of his IEP going forward. The team did agree that the idea of him playing tee-ball with other kids from his school is a great idea and will hopefully find a common ground to talk to other kids.

So the recommendation going forward is to transfer him schools next year for first grade. This will allow for him to be in the least restrictive environment and go back and forth to a mainstream class while getting the help he needs in other areas.

Our next meeting is scheduled for May 7th to finalize 1st grade plans. The decisions we are starting to make going forward aren't exactly easy but I know that we are in a good school district and between his teachers and myself and W we are looking out for what is best for him in the long run. The path isn't going to be the easiest but we know going forward that he will need a little pushing and help and that's fine with us.