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.

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.

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.

Happy Birthday Alvin

Today Alvin turns 6.

Happy birthday Alvin. Today you turn 6 years old. Every day you manage to challenge us, make us laugh and scratch our head all at the same time.

This is what happens when I leave a stamp out!

Cuddling with his baby sister

Running the bases at Safeco Field

The past year hasn't been easy for you, but youhave come out of each issue with a smile and a great attitude.

The highlight of our Chuck-E-Cheese trip. Seeing him be able to hold himself on a moving horse.

Who says you have to sit on a swing to have fun. Playing superman is much more fun.

Cuddling with his favorite bear.

So happy birthday Alvin. We couldn't be prouder of all you have overcome in the past year or the  little man that you care becoming.

The Sibling Connection

There is always talk about the affect that having a brother or sister with autism and what affects that it has on their relationship and overall experience growing up. As Elliot and Alvin get older I am starting to understand more of what this really means.

Over the past few months I have seen the relationship between Alvin and Elliot change and grow. One thing that I expected was for Elliot to be a very good big sister to Madilyn and take on the big sister roll well. What I didn't expect is for her to begin to take on the big sister roll to Alvin.

Over the past year with all of our visits to Seattle Children's and Alvin being hospitalized twice for about a week each Elliot began to understand things. She began to understand that he isn't like other kids his age or hers. Slowly over time she became protective. As in you mess with him without her permission and you will pay dearly. When we are home she messes with him and beats him up like any good big sister.

The funny thing is when they are separated they each get a little lost. At school when the year started Alvin had some issues. He was apprehensive going into class and interacting with the other kids.

This past week Elliot went to a camp at the little gym without him and honestly just looked lost. Alvin had a rough day and we thought she could use a little time with other normal kids just to have fun. When we got there she just stood there at first just looking for another kid she might know, but overall just looking lost from not having him with her.

I honestly think though that Mac, Elliot and Madilyn will all be better people for having a sibling like Alvin. Elliot especially has seemed to learn so much about being around kids and adults with special needs and instead of shying away from people that are different she is drawn to them.

So maybe having a sibling isn't such a bad thing or burden like it is sometimes made out to be. Maybe those of us with kids with autism are actually giving their siblings something that will benefit them far beyond their childhood.

The next steps

So during our first complex care visit we mentioned that we had some concerns about his teeth. Dentist appointments have always been a nightmare and he was well overdue for a visit. They understood our concerns and referred us to a dentist that works with as a partner with the University of Washington in dentistry and only sees kids on the autism spectrum on one certain day of the week.

We had the appointment last Monday and just like last year tested our health insurance, this year our dental insurance will be tested. Turns out he has cavities in his top front 2 teeth and some of his back teeth. He has a chipped tooth and an abscess on his gums.

Once again you think all of this would have hurt and he would have shown us that something was wrong, but he didn't. He never acted painful. A while back when we were dealing with the onset of learning about him having hydrocephalus I said that I just wish he could have shown or told us he was in pain. Once again I just wish for a little bit of that communication. Because of his high pain tolerance and inability to tell us something is wrong we are left in a bad place. We can never be sure he's ok. We never know if something is wrong or hurting. As a parent this is something that hits both of us pretty hard. We are still hopeful that one day things will change but for now this is just the way it is.

So now we wait for a call from the scheduling department for oral surgery. This is going to be another major surgery for him at Seattle Children's but should just be out patient. The amount of work they need to do is staggering, but we know its for the best. Once this is taken care of we can start trying to get him back on track with his dental needs and start getting him used to the dentist again.

I'm back

First off I apologize for being gone for so long. With the end of my pregnancy things just got crazy and I ended up just posting bits and pieces to facebook and twitter rather than sitting down to actually write.

Now that Alvin's baby sister is here and I'm back at work, things are starting to calm down  just a little. Well at least until the first of the year.

The biggest thing going on right now is our family was asked to participate in a research study at Seattle Children's Hospital. Its called the Comprehensive Care Management study. About 600 families were selected and of those half are in the control group and half are in the intervention group. We are in the intervention group and are meeting with staff once a month to meet with a pediatrician, dietitian  nurse practitioner and when needed a social worker. The first meeting we had was rough. It was 2.5 hours of meeting with each individual on the team and going over everything that has happened up until that point. From the autism/asperger's diagnosis to the more recent hydrocephalus discovery. It was draining to say the least. The staff was great but in the end it felt like everything we had ever done for him was questioned.

We met with a nutritionist, doctor and nurse for 3 months straight once a month to go over not only health issues but also his weight issues. Now that things are calming down we have a 3 month break and in that time he will be seen by a pediatric dentist who specializes in autistic kids, a neurogenetics screen and the staff is having us re-do is autism screen as well just to be sure we know the extent of his autism.

We had another scare with his seizures returning and so far the MRI's show that his ETV path is clear but the underlying cause is still unknown. I can't stress enough how great the staff at Seattle Children's has been through all of this. The doctors, nurses and all staff we have interacted with have been wonderful in accommodating him as well as the rest of the family. The staff in the research study haven't treated us like a number but as actual people that are doing the best we can with what we have been dealt.

So this next year I plan to be back. I have a lot of things I want to talk about. Some with autism and some with hydrocephalus and some with both. So I apologize for being gone for so long but my plan is in 2013 to be back in force to talk about life and issues that come from having a son that is literally one in a million.