Ok, God has seen me through this last storm so I can now rest. Of course, I manged to catch a cold during this time of rest but fighting a cold is a cake walk in comparison to what our family has gone through these past few months. Matthew….oh Matthew. Our youngest of two very spirited children. He has autism. Of course when you mention that a child has autism, that leaves very little to understand. Autism is a developmental disorder. It’s a huge spectrum. Think of a line on a graph. There’s anywhere from severe autism to mild which is where you see Asperger Syndrome. Asperger syndrome is also called high-functioning autism. My son is in the moderate area of the autism spectrum. He is 7 and he is the most complicating soul I have ever met and I’m crazy about him. His older brother Alec, my other spirited gift from God, is definitely not one to be ignored. Although he is a ‘typical’ child, he definitely has his moments. In fact, he is who helped us understand this whole concept of Autism, PDD-NOS, Asperger’s……etc.
When Alec was just 18 months old, I was very concerned with the fact that he wasn’t speaking. My good friend’s little girl was practically rattling off sentences. Alec said nothing. Alec didn’t even point. It was strange. But him being my first, I had nobody else to compare him to. As he was getting close to age 2, (I was pregnant again at the time) I became concerned that he wasn’t hearing well. He wouldn’t understand any of my directions. So I made a phone call to our local Early Intervention. So begins the adventure of our lifetime:
Alec was just 2 years old and my hope for EI was to get him to see their Speech Pathologist since he didn’t have any…. well….speech. I seriously thought that a few session with the speech path would help him catch up. But oddly enough, they wanted to send a “family consultant” out to our home to interview us and observe Alec instead. That was fine. The consultant was very nice. It was also agreed that, yes, Alec needed speech therapy. A month went by and Matthew was born. My sweet little baby who never cried except for when he was hungry or needed a diaper change. But Alec, was going into toddler stage. Instead of talking though, he did a lot of screaming, and throwing, and head-butting I recall. One day an occupational therapist from EI decides to give me a call. I didn’t even know what an occupational therapist (ot) was or what he did but he was very nice, just the same. The one strange thing about him though was that he would ask me all sorts of questions about Alec….as if he had met him already. “Does your son scream a lot?” he asked. “Yes”, I answered. “Does he cover his ears all the time?” he asked. “Yes again.” Then he asked, “Does he meltdown in the grocery store?” “Does he like spinning things such as fans, wheel,….etc. ” Wow, I thought. How does this guy know all this? The OT explained Sensory Integration in kids. It was complicating but it did make sense. Alec could not filter certain things out causing him to have difficulties processing things in his brain. No wonder the kid was throwing tantrums. Normal sights and sounds in the store…..well I can just drowned them out. But poor Alec, it was like being stuck on the tilt-a-whirl for 30 minutes straight. So now we have speech disorder and sensory disorder. Sure with some speech and OT he will be as good as new…..right?
Looking back I realised that EI was priming us for the fact that Alec was on the autism spectrum. They didn’t come right out and tell us and for good reason too. It was a few months before they brought up the “A” word. Our reaction was denile and anger and we were determined to prove otherwise. Even the Autism Specialist identified him as being on the spectrum. Our last stop on our lets-prove-them-all-wrong tour was a trip to OHSU where we scheduled an all-day evaluation clinic for him. Then we could find out that this kid is NORMAL, but with a few quirks. I remember the trip out there was excruciating. John had to exit the freeway 4 times to find me a restroom, I was so nervous. Well the clinic was not at all intimidating. At the very end of his long evaluation (by several other experts) came the final results. “Your son does display autistic-like behaviors. But overall, they are so mild that he barely fits on the spectrum. It’s like he’s a typical child with a sprinkling of autism, he could very well outgrow many of these symptoms and not be on the spectrum a year from now, but that’s not a guarantee.” My reaction: “I’ll take it!” John’s reaction. “I spent thousands of dollars to hear that?!”
But I have to say, a year later, along with therapies and a gluten and casein free diet, doctors agreed that Alec no longer fit on the autism spectrum. Of course there were some characteristics still present but not enough to meet the “criteria” to be diagnosed wtih autism spectrum disorder. PRAISE THE LORD!!! Almost all the books you read on autsim so far say you can’t be cured. But I felt that the fact Alec was so mild, you CAN outgrow some of this stuff. So when Alec turned 4, he was already on the fast track to being a “normal” kid. He still had issues but much milder than we were anticipating. By this time, Matthew was almost 2. Not talking, not pointing, not understanding simple diretion……here we go again.
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Ok, where was I? Oh ya. The year 2004 was quickly approaching and John and I were on cloud nine with Alec’s incredible improvement in his language skills. The rate in daily tantrum throwing dropped 80%!! The rate of my tantrum throwing dropped 70%…..I mean, I still had John to tolerate (hehe). Ok, dumb joke. Those who know me well know that I seldom throw tantrums. In fact I have always been pretty good at putting on the I’m-a-good-mom-who-has-incredible-self-control show. Note that I said “show” The stress I endured had other ways of manifesting itself. I will give it to you in three words, Irritable Bowel Syndrome! Oh ya, 2 more words for you: Acid Reflux. And let’s not forget Sleep Disorder.
So last I left off, Alec is doing great and Matthew is our new concern. What were the odds having two kids with the same issues?? I didn’t realize at the time that the odds of having more than one child with autism was relatively high. But this time, John and I were better prepared for the things that lied ahead. The evaluations, the dr visits, the therapies and the mountains on top of mountains of surveys to fill out! Never ever ending. And keep in mind, Alec was still receiving therapy as well. We held high hopes though that Matt’s outcome would be the same as Alec’s. But when Matt was approaching age 4, we had to admit this was not a reality. Matt was barely talking yet. If anything, he was just hitting and screaming. His tantrums became so bad that I couldn’t even get him to his OT appointments because he would freak out in the car and undo his seat belt. On the freeway! Taking him to the grocery store and reseraunts was out of the question too. You parents know what I mean! Now I don’t want paint him as this violent, screaming maniac though. He isn’t. He actually is very intelligent. He has a very sensitive and sweet side. Many kids with autism lack empathy. That part in their brain that acknowledges the pain of others just simply isn’t there for many of these kids. Matt does have that. He cares. Sometimes he is so sensitive to other people’s pain, that another person crying can cause him to have a meltdown. Once he saw me crying and it was so hard for him to see that he tried poking my eyes to make it stop. Kind of like kinking a hose. So then that made me laugh…which wasn’t good because then he thought poking me in the eyes brought me happiness.
So now I am fast-forwarding to today. There is so much in between but that would take an eternity for me to write. Alec is now a “typical” 3rd grader at a wonderful school and he no longer needs the speech and occupational therapies. Ok, I call him “typical” but lets be very clear….this kid is could potentially rule the country..and I don’t necessarily mean that in a good way.
Matthew is attending a special ed school with teachers who love him as much as we do! God has really blessed our family when it comes to our kids and their education. Our hopes for Matt though is that he could be mainstreamed at least an hour a day into a regular first grace class. He would need his assistant. It hasn’t happened yet this year. Matthew has had a very very hard year. He has these times where he spikes in language and the growth is amazing. And then there are times where impulse control takes a nose-dive. These roller-coasters never come to a complete stop and lately the storms have just been rolling in one after another.
Matt is currently on a waiting list to see a team of doctors at OHSU’s Child Development program. It’s an all-day clinic and very thorough. This is the same clinic that diagnosed Alec with his “Sprinkling of Autism”. I feel they were right on with him. Maybe we can get a more intense evaluation with Matt. See how we can help him with his behavior problems. It’s become more difficult as well as desperate lately since he is now a 60lb 7 yr-old and I am just a 95lb 5ft tall 34-year-old. When this kid blows..he blows. Things get broken and I fear him doing serious harm to himself or one of us.
Two weeks ago, the behavior issues hit an all high peak. He melted down between 4-8 times a day and up to 12 times a day on weekends. These meltdown aren’t your typical throw-your-self-on-the-ground-and-kick-and-scream tantrums. These were “I-want-to-kill-you but I am going to destroy everything that isn’t nailed down first!!” Yes he does say “I want to kill you!” And I wanted this kid to talk more??
By now, you are probably horrified. “How could this family let this kid get so out of control?! They can’t blame it all on Autism!” Well first of all, those who know us and Matthew and who have seen what we deal with first hand, would most likely be coming to our defense. Along with other parents with autistic children. God has given me the gift of patience and self-control. We are still trying to figure out what God did with Matthew’s but we are hoping that when God finds it, He will ship it Next Day Air. (Ok another stupid joke, sorry)
It Takes a Village 