Tuesday, May 26, 2009

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....

Monday, May 11, 2009

Old Patterns Resurfacing

I've been noticing a few patterns, from the first few seizure years, resurfacing.
~ seizures at meal times ~ I haven't figured out why, but for some reason meals used to trigger a cluster of seizures. We've been seeing that happen again over the last few months.
~ 1 am seizures ~ I used to stay up until Mason had his first cluster of 'night seizures'. Back then, nearly every time I would decide to go to bed at a decent time, he would seizure shortly after I fell asleep. Then I couldn't get back to sleep, so I would just wait for the first round before going back to bed. He would also be awake (and alert and happy) for quite a while before falling back asleep. So this is starting to occur again. (so I may as well be blogging!) He's awake right now reading a book. Well, actually, pressing the noisy buttons on his book. Go back to sleep, boy!!

A pattern that has NOT resurface, is the lack of learning. He's still moving forward! Nothing I can explain, other than the grace of God. :) Today he peeled 4 hard-boiled eggs. And he did a good job. Unusual, but something new!

We truly are thankful for each day that Mason is doing well. Even though what 'well' looks like is constantly changing! I'm reminded of the old hymn, It is Well with my Soul:

When peace, like a river, attendeth my way,
when sorrows like sea billows roll;
whatever my lot, thou hast taught me to say,
It is well, it is well with my soul.

Our 'lot' keeps changing, but we can depend on Jesus, who is our Anchor, because he is Truth.

Well, Mason has fallen back asleep now. G'night!

Monday, May 04, 2009

Naked Cats

While in the car this morning, Mason and I were talking about our cat sitting on his window sill last night. Conversations with him are quite choppy. "cat", " 'dow", "loud", "meow". Suddenly he's giggling. (I love that sound.) Then he's saying, " 'aaked". He had just realized that the cat is naked! Funniest thing in the world at the moment! He could hardly wait to come home and tell Daddy! And I could hardly wait to blog it!
It's been a while since I posted. We've been a little busy!!! So I'll write up a few things that I can remember, but I'll start with a medical update.

Overall, since Mason had brain surgery in Sept, 2005, his seizures have been minimal, allowing him to start to learn again. They have had a very gradual increase and the years have gone on, but nothing of concern. Over the last year they have been increasing a little more rapidly, but I think I've been in denial about it because he has continued to learn and grow developmentally. Over the last months they've fluctuated quite a bit, often because of his new anxiety issues. Over the last few weeks they've increased sharply. Especially at night. He actually screams with each one. They really freak him out. They are sharper and much stronger than they have been. He is also fully aware while he's having them. Before surgery, he would lose all awareness and a portion of his memory before, during and after a seizure. So this is why they are scaring him. He's fully feeling and remembering them. He's up once or twice each night, anywhere from a few seizures up to 10 or 20, sometimes lasting 30 - 45 minutes. We started going up on his medication a couple of days ago. The screaming has stopped, but the seizures haven't.  I'll probably increase it again in a week. Other than that we don't have options. He's been on everything. The med they may want to try next has bad behavioural side effects, so I don't think I want to go there. 

In spite of the increase in his seizures, Mason is still progressing! He is stringing words together on a regular basis! Last week we, as a family, were at Dairy Queen, enjoying our ice-cream. The girls were bickering a bit when suddenly Mason looks at Asia and says in a stern voice, "Asia, be nice!". We all burst out laughing in surprise. He comprehended what was going on, AND he articulated a full sentence!

Other stories:
Easter weekend - the kids and I spent a couple of nights down at the trailer. Our neighbors, there, were out as well. Their kids are the same ages as ours, so they hang out/play  together. Something very exciting occurred that weekend. As I sat around the fire at Adrienne and Luigi's trailer, Mason and Nick (their 12 year old son) played together. Kicking balls, finding sticks, etc. The really neat thing is that the two of them wandered off to our trailer and back and into the bush and generally were all over. And I just stayed at the fire enjoying the company of my friends!... without worrying about Mason! He's come along enough that we don't have to have him within constant sight! He can go off and play like any typical little boy!

We also had an Easter Egg hunt down there. What a hoot watching six kids looking for plastic eggs all over our campsites and in the bush! Three of those 45 plastic eggs are still waiting to be found! Us moms couldn't remember where we put them all!

Gate-Free!
We have also taken the gates off in our house! First time living without gates! That means Mason can go upstairs any time he wants. Although in reality, he wants to go up less often than when the gate on the stairs was on. 'The grass is greener....." When he does go upstairs, he goes on the computer or off to play air-hockey. He knows he is not to go into the girls' bedrooms, but he will if he's chasing one of the cats! 

Gates off also means he can now go into the kitchen any time he wants. I've put a little flip-lock on the pantry door to keep him from scrounging for food. It only took him two days to figure out how to open it! He got a plastic cup to help him reach the lock and pop it open. He's a smart kid!

Imagine Ministries: (imagineministries.ca)
Mason LOVES going to church now! He loves his Imagine class and his caregivers. We now have 6 kids attending. Two that are integrated into their peer classes. :) More plans are  coming for Imagine!

May 2/3 weekend services at Northview. At the end of each service, there was a group of 25, or so, of us doing 'cardboard testimonies'. Click on weekends at northview.org, then messages to watch it online. I was up there. The first side of my cardboard, in the shape of a puzzle piece, said, "Our son, with medical and special needs"... turned the cardboard.... "IS created in God's Image". I tried to get Mason to go on with me on Saturday night, but we had to go past the drums and that was too loud for him. Daryl brought him Sunday morning to the last service. I watched Mason in the doorway as he clapped and cheered, along with everyone, as each person turned their cardboard. After we were finished and left the stage, I gave Mason the cardboard. (he thought it was his the night before). They were singing one last song and Mason wanted me to go back on stage. I thought he just wanted to go up to the front, as other people were going up with their mini puzzle pieces. We came back, then he decided he wanted to go up the center isle holding this big cardboard. He just stood there, watching. I was amazed, as he usually bolts from the main sanctuary. ( I could have tried to get him back, but he probably would have ended screaming a lot). Then when the service was over and almost everyone was gone, Mason decided to go onto the stage. He stood there with his cardboard watching the worship team pack up. He told me to sit in the front pew and watch. So, once again, I patiently waited. It was nice to see him comfortable in church! :)

Coming up:
May 26 appointment at Sunny Hill Hospital in Vancouver to assess Mason for Autism. His psychiatrist saw some signs of it. If Mason does get the Autism diagnosis, that will mean more funding and help for him.