I've never in my life come across such a perfect little boy. Tall, wispy sandy blond hair, perfect porcelain skin, that gap in his front teeth, and the sparkle behind those gorgeous brown eyes. He lives in his own little world. Rarely does he come out. But when he does, the connection is magical. His purity in how he sees things is something one can only dream of; but he is different. He is special. He needs so much more than typical children.
Braydon was a difficult baby. He was always so fussy, and difficult to settle. He never wanted to sleep at night. It was exhausting. But he hit all the milestones on time... all except speech. At his 18 month immunizations, they suggested we might have him evaluated by a speech therapist, as he scored below the cut off for a "typically developing child." My ignorant pride said no, he will be fine, his sister was a late talker too. When his second birthday came and went with no sign of words coming, just his beautiful jibber jabber, I started watching more closely. Something in my mama gut told me that my life was about to change. During play dates, he would not acknowledge other children, let alone play with them. He seemed to obsess over particular toys, and get very upset if anyone would try to play with him. He wouldn't respond to me when I would call his name. When I would change his diapers, he would look anywhere but in my eyes. I knew something was amiss, but started at the obvious first step; I called to make the appointment for the speech assessment. Six weeks went by, and Bruce and I took our beautiful son down to the clinic. We watched the Speech Language Pathologist interact with him, and try to get him to point to the dog on her flip chart. When he didn't she would move on and try to get him to point out the keys in the line up of random objects she had put out. He didn't. After several failed attempts, and what seemed like an eternity observing this, Bruce and I exchanged concerned looks and by the end, she strongly encouraged us to get him involved in an early intervention program as soon as possible, as he was officially diagnosed with a "severe language delay." He was in the
A couple of months later, we took him to our Pediatrician. After 45 minutes or so of questions and observation of Braydon, the Doctor looked at me and smiled. He said as sincerely and kindly as he could "You're a smart woman... you know what this is." He confirmed my suspicion of Autism. Finally everything made sense. The way he isolated himself, the rigidity in requiring routine, playing with toys in unconventional ways, his being non verbal, and the way he flapped his arms when he got excited. Finally there was a reason for the horrible meltdowns he experienced several times a day. I know that he was only 2 1/2, and I know toddlers have tantrums, but let me tell you there is a great deal of difference between a meltdown due to sensory overload or something out of my control, and a toddler temper tantrum. He would become so rigid and violent. Headbanging and lashing out at anyone or anything that tried to intervene. They would often last 45 minutes to an hour, and I always wondered how such a little body had the capability to endure a physical upset of such magnitude that lasted that long. But he did, and he experienced these twice or three times a day for months. I would often cry myself to sleep, because it hurt my heart that my beautiful special son was hurting in such a way where violent upsets were his only way of handling it. It wasn't until he started at the EASE program through ASPIRE that we saw an improvement.
His lack of verbal communication continues to be a struggle on a daily basis. He relies mostly on hand over hand at home, and it can be very frustrating to have him constantly pulling on me to take me to where he wants, and hopefully I guess right. Although we are receiving home therapy in addition to the support he receives through EASE, I feel as though I am always just keeping up with his demands, and my concerns for the future can be overwhelming at times.
Relationships with family have become strained, and I have lost friendships directly or indirectly because of how Autism has affected our family. So few people know what Autism is, and how drastically it can impact a family unit. We rarely go out as a family. Family outings are limited to outdoor activities, and happen only when there is a constant support for Braydon so he can be supervised continually. Birthday parties, and other social activities are not participated in, due to past experiences resulting in severe meltdowns. Any time we do leave the house, a great deal of preparation is required, and the acknowledgment of having to leave at a moment's notice is always a possibility.
While I can't change the diagnosis that my children have, what I can try to change is how my friends and family view Autism. I'm not a doctor, and am far from an expert, but I will always be there to answer questions. Please don't ever think you will offend me with questions! I WELCOME questions! What offends me are callous assumptions and ignorant comments.
The purity of my special little boy is something that all people can aspire to. The simple joy that he exhibits everyday because of his innocence brings a peace to all those he comes into contact with. He truly is an inspiration, and an example that Autism is NOT a tragedy. The tragedy is the lack of awareness of this growing disorder that affects our population, and the families of those diagnosed as well. My hope is that by sharing my family's story, we can bring greater awareness to our community, so that we can in turn create a better quality of life for all of those affected by Autism.