A SOCCER MOM

The very first time I heard the term "Asperger Syndrome" it was connected to a 9 year old boy on a friend's soccer team.  She said that this kid had a really hard time coping with change and had thrown himself on the ground and screamed and thrown a tantrum like a two year old when she tried to change his position on the field.  I knew in that moment that whatever this boy had, was what was making our Cameron's life so challenging.  That was the start of our journey...a story about a kid playing soccer that lead to a diagnosis that changed everything.

In the years since then, so many of the rites of passage that I saw other kids pass through, were untouchable to us for any of the kids...play dates, little league and soccer practice were replaced with evaluations, specialists, therapists and IEP meetings for special ed. 

So this spring, you should have seen me crying like a baby all the way to Cameron and Ewan's first soccer practice.  Me. A soccer mom. Wow.

Cameron was amazing! He played his heart out!

WHO WANTS NORMAL, ANYWAY?

Setting: The waiting room for the boys' Occupational Therapy
Time: Wednesday Morning
What Happened: Cameron walked into the room and found two bean bags and took them to a corner where he sandwiched himself between the bags and began humming (not the pretty, musical kind-the self soothing, continuous pulse kind). Ewan was so excited for he and Cameron to be sharing their new session time (they used to go on different days). He really wanted to interact with Cameron, so he walked around the parameter of the bags, looking for a way to play with Cameron that wouldn't upset him. He ended up carefully laying down on top of Cameron and the bean bags and humming with him. There they were: this odd pile of brothers and bean bags making this awful noise together. It was really quite touching. I sat there thinking: Is it "normal" for brothers of seven and five to interact this way?...in a delicate balance of the younger trying to find a way into his brother's acceptance even if that means behaving in a socially inappropriate way? And by the way, what is normal? I may never know.
I'm learning to let "normal" go. Who wants normal anyway, when you have the kind of life where a humming, brother/been bag sandwich in a waiting room can fill your heart with gratitude?

WASHING DISHES

I'm not a big fan of washing dishes. You? It's one of those bottomless jobs. I recently decided that dish washing time was a good time to pray. Rather than stand there mindlessly, I could be pondering the answers to the worlds problems and talking to God about it directly! This was especially helpful during the school year when we were in super-problem-solving-mode just trying to help Cameron get through each and every day.

So one day, I was at the sink rinsing dishes...pouring out my heart to the only person who knows and loves Cameron more than I do, pleading for some direction. I have learned that when you get an instant idea in the middle of a prayer and it makes you feel like life is the most beautiful thing ever and it is something YOU WOULD NEVER HAVE THOUGHT OF ON YOUR OWN...God is talking to you. So that is the moment I knew I was going to home school.

People's response to this decision has been interesting...some in favor, some in disbelief and many well wishers, but no matter. When your heart fills with joy and hope and confidence that God has answered your prayers who cares what anyone else thinks? Well, almost anyone. I really wanted Evan behind me...needed Evan behind me. He and I agreed on a summer run to experiment with how it would work with all the kids. I can tell you, our life has been so, so much more peaceful since school got out. Cameron has calmed way down and returned to the loving and affectionate boy we know him to be. I have found such peace in this decision, but Evan still had some really valid concerns.

I didn't want to force my feelings on Evan...tell him all the reasons why it was going to be great, tell him he just had to have faith in my answered prayer, or just move ahead with my plans and him still having some justifiable questions. So I prayed some more. I prayed that God would take care of Evan getting on board.

We have been seeing a new Developmental Pediatrician for Cameron. We just completed a series of evaluations that included him observing our entire family together. Last week we met with the Doctor to review his feelings about what else Cameron might need. I have learned to take "experts" advice with a grain of salt. Sometimes it is enormously helpful and other times it is clear that they don't "get" who Cameron is or what the need is at all. I went to this meeting with a very open mind, but few expectaions. He started by talking to us about some of the latest in cutting edge research about the brain. He told us about some Dr. in California who is studying brains of kids who seem to have problems with the regulatory function in their brains. In short, their emotions are not proportionate to their experiences. This is a common issue with kids on the autism spectrum. What would be a minor inconvenience to you or I feels as stressful as a major car accident to them. He talked in detail about the chemicals and hormones involved in stress and said that Cameron exhibits some signs of Post traumatic stress disorder...just from every day life.

He said...I can tell you what I think Cameron needs, but I am at a loss right now as to how exactly to go about it. Cameron's brain needs a break from the constant flow of stress hormones that flood his brain every time he has a meltdown. It will effect his brain development if we stay on this path of major daily stress. The more meltdowns he has, the less his brain will be able to regulate in a typical way. At this stage of development, Cameron's brain still has unassigned brain cells that could become part of his developing regulatory system. I'm not sure how we would do this, but we have to think outside the box here...

This was when I piped up and mentioned the home school idea. I talked about the amazing positive changes we had already seen in the past month with our emerging home school schedule and chores and a general reduction in the stress of hurrying every where we go...Like the time Cameron and Ewan sat on the rug and folded their laundry together and when Cameron was done, he helped Ewan finish his and they laughed and interacted the whole time and at the end of it, they hugged and Cameron told me that he and his brother were "like this" and held up two fingers side by side, touching each other. The doctor got misty eyed when I shared this. He told me he felt my "instincts" were spot on and that he thought the home school idea was right along the lines of what Cameron would benefit from right now.

Evan and I came away from this meeting completely on the same page! What a miracle it was to have a doctor telling us that there was good solid science behind what God had directed us to do. I know that this meeting gave Evan the confidence to trust his crazy wife with the ginormous task of educating our kids. I tell you...I HAVE A LOT OF WORK AHEAD OF ME...I get that, but I am so, so excited. God is great!

THE CHASE

It began like any other summer day fiasco...with my delusion that I could handle four kids at a place like the beach with no husband. After all, I was going with two girl friends who know my children well and there would be three pair of eyes keeping track of my little free spirits.


Then my friends got the idea of walking up to a nearby restaurant to purchase salt water taffy from the gift shop. I was sure I'd be fine for a few minutes just me and my four kids. My friends were not out of sight three seconds when I had the (three seconds too late) thought to take stock of my brood. Anne? In my arms. Cameron? Check. Ewan? Check. Heather? Heather? Heather? No where to be seen. Panic. Terror. Did she go with my friends? Am I missing her behind an umbrella or sand castle? Just then as I was looking around, a family approached me and asked if I was looking for a little girl in a blue Old Navy swim suit. Yes! That's her!

They informed me that she was way, way down the beach near an almost imperceptible American Flag. So there I was with the baby and the boys and my WAY out of shape body needing to run way down the beach to rescue my daughter. I yelled at Cameron and Ewan "Come on! We have to go NOW! Heather is far, far down the beach and we have to go get her!" The boys took off ahead of me. Several times I tried to tell them to slow down and run WITH me (if you could call it running!) but Cameron is not the best at following instructions and Ewan is usually following Cameron. With loud crashing waves and strong winds they were beyond hearing distance only 20 or so yards ahead of me. I was moving as fast as I could in the sand carrying my 20-something lb. baby girl. I could see the fiasco part about to happen before it actually did...Cameron ran down on the shore side of the beach by the water and Heather was up by the rocks.

When we finally caught up with Heather, Cameron could not see her and was out of ear shot to hear me calling him. He just kept running. Now I had a hysterical three year old who had been lost, an exhausted four year old who was terrified he would never see his brother again, an oblivious baby who was just along for the ride (and arms that were turning to jelly from carrying her) and Cameron was running as fast as his seven year old legs could carry him down the beach to rescue the already rescued sister. What was I to do? What on earth could I possibly do? I had to run after him with all the little ones in tow. We chased him down the beach frantically calling after him for over two miles. Yes. Two Miles. It was the most frustrating two miles of my life. My little ones were hysterically crying, following behind me as I screamed at them to hurry up. He just kept running. There was no earthy way for me to catch him. I was loosing him and abusing them and It was then that it occurred to me that this was my life...Chasing Cameron, trying to save him and dragging my other children along because I have no choice.

You see, three years and two months ago Cameron was diagnosed with an Autism Spectrum Disorder. He is a bright, imaginative little boy who is significantly socially and emotionally delayed and suffers from sometimes debilitating anxiety and frustration with just about anything that doesn't go the way he thinks it should go. At seventy lbs. he can throw a tantrum to put most two-year-olds to shame. When things are at their worst, he is in an almost constant "fight or flight" mode. These days he lives in a world that revolves around building, buying, researching and playing with Legos. He has lists and lists he has written of hopeful future Lego purchases or Lego presents and has even started drawing out plans for ideas of Lego sets to send to the Lego company. In short, he is a lot of work. It's not that my other kids don't have their own special needs as well: Ewan has some developmental delays and Heather and Anne both have some health problems they have had since birth. It's just that Cameron's special needs are a full time job, and when Cameron's needs aren't met, our family cannot function. Period.

I cannot begin to put into words the degree to which I love this little boy. He is my first born. I really hate it when people say things like "I could never do what you do" or "it must be really hard being you." Cameron is the one who truly suffers. A Developmental Pediatrician described it to us recently that neurologically, it is like Cameron has Post Traumatic Stress Disorder because he experiences so much of the world around him as traumatic. But the thing is, I love each of my children, and I cannot bear the thought of hurting them, or neglecting their needs in my desperate chase down the beach that is our life!

So what do I do? How do I reach him? How can I CATCH him with out neglecting the three other precious, precious children? I am finding new answers to this question every day, but the key (I am learning) is God. I cannot do it alone. I have to pray like I prayed when I was running on the beach..."Give me strength, Father. Make my legs strong enough, make my voice loud enough. Guide me to who can help us!" I have to do what I finally did on that beach. I found a life guard who jumped in a truck and drove ahead to bring him back to me. I needed help. Every day I need God's help. What I cannot do alone, God can make up the difference and lead us to the paths that we need to follow. He is my partner in Chasing Cameron.