Autism Assessment

Ok, this is going to be another one of those long rambling posts of mine. 

Grab a coffee and sit down....

Blogging about Mason has three purposes. 1. inform and update family and friends (and total strangers, too!) 2. It helps me to process what we're going through. 3. Point us all, that's you the reader and me the writer... point us to God. I see so many itty bitty little details (and some big ones) that are evidence of his handiwork. I hope you notice them!

Today was the Autism assessment at Sunny Hill Hospital in Vancouver. It's a part of Children's Hospital, but a different campus. I'll give the quick overview, then the details.

~ Easy drive in and home - good traffic - roughly an hour

~ 4 1/2 hour appointment

~ 2 doctors

~ Lots of toys and playing with one of the doctors (Mason not me!)

~ Almost two hours of questions that I had to answer. 

~ Result... There are three areas that they look at for Autism. Communication, Social, and Behavioural. Mason fits into all three for Autism. 

~ New BIG learning curve

~ Filled out forms for funding

~ They faxed it off and we will get funding for the full month of May

~ $6,000 per year. We can go on a vacation!! LOL, I wish...... I have to be accountable for where it's spent. They set the rules of what that is. I don't know what that will all entail, but therapy for social and behaviour will be the focus. 

~ Next appointment will be in July where I will get all the details. I could have had it sooner, but June is a busy month, and I don't want to think about the Autism stuff yet. 

~ I'm still flying on adrenaline

~ It's after midnight.....

Ok, The Details

Are you still with me? 

First I'm really thankful that this process has gone REALLY fast. That's not the norm in getting a diagnosis for Autism. Mason's psychiatrist referred us in (I think) February. (I'm too lazy to check my past posts right now.) So that's only 3 months.

Mason really had a fun day. Any time someone gives him full attention he's a happy camper. The doctor looked like he was having a blast, too!

They asked me a ton of questions about everything. What are some examples?.... Fixations: Mason likes doors closed. There are some that stay open that he's ok with, but he made sure doors were being closed while at Sunny Hill!  There were a lot of questions of how he interacted/played with other kids. He's quite bossy and has to play his own way. He can't handle playing what someone else wants to. That was something I just thought he would eventually grow out of. Guess not! Gotta pay a trained person to try and teach him that. There were a lot more, but I've gone blank. (that's not unusual)

The result: I was surprised when the doctor said that Mason met the criteria for Autism. We've focused on the seizures for so long, that the behaviours have always been secondary and so I haven't paid super close attention to that. A few minutes in I almost started crying, not because I was upset, because it was an emotional rush. I've been suppressing it all evening. Saving it for tomorrow afternoon. 

I don't fully know how I feel about this diagnosis right now. Check back in a week or two, I may  or may not know more then. It is a good thing because we will get funding and help for Mason. 

Learning Curve

Something else occurred to me just a short time ago. All these years, starting with Infantile Spasms then as it progressed into Lennox Gastaut Syndrome, there has never been any type of predictability. I always thought that if he had something like Down's Syndrome, there is a 'list' of things that are common with it. There is some level of predictability. With LGS the only prognosis is: 'it depends if we get seizure control". There are three things with IS and LGS: Resistant to treatment, severe developmental delay and what the seizures look like. LGS can have up to five seizure types. Mason had them all (before surgery). We've just never had any idea of what to expect for the near or distant future. That is something that we have literally given over to God; to trust him with Mason's future. That involves letting go of our need to know what that could look like. We don't even know to what degree Mason's seizures will return. It could stay mild, or ......

Now with an Autism diagnosis, we get that 'list'!  I know, I know, .... every child with Autism is very different. But there is an extensive list of patterns that kids with Autism follow. We'll see which of those patterns will be specific to Mason. But at least there's a list to look at! :) That list will be able to explain a lot of things about Mason that we have always thought of as random or caused by the seizures. I'm already connecting the dots on some things, and am going to ask the doctors about others. 

Next Steps

The forms for the funding have already been sent off. They wanted that to get in asap so that we would get the funding for May, even though we're at the end of the month. The appointment that we will have in July will be to give us all the details on Autism itself, how to spend the funding, other services and resources we will have access to. And some other stuff that I've probably forgotten. Nope, no vacation.....

It's going to be a lot of work organizing and acquiring people to do the therapies with Mason. 

Through this all, Mason is still Mason. Created in God's image. Created by God for a purpose. He is not a mistake. He is special, beautiful and a light wherever he goes. He can have a list of letters attached to his name on his business card of life (Mason Martens IS, LGS, A), but he is still Mason. One unique kid! His sisters can attest to that! By the way, Mason couldn't have any two better sisters! Thank you, Asia and Sydney, for the way you treat Mason and love him. This added diagnosis will affect our whole family. 

During those first months and years the book of James in the Bible was my biggest encouragement. It is no accident that this is now the focus of the current sermon series at church. The NL translation was my favorite: 

Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

We now have a new round of opportunity for great joy, testing, endurance and growth! You have my permission to email these verses to me when I'm not seeing the joy or the opportunities! But be assured, I know what God has done in the past, and I know He is faithful and I will be telling you more stories about him! Stay tuned!

Thanks for hanging on to the end!

G'night. Hope I can sleep! The boy has been sleeping a little better! I'll blog about that some other time....