I’ve started this more times that I can remember. I really don’t blog about my kids. I don’t blog about my tweens and teens because they are teens and tweens. Who knows where a blog post I write may land one day. Honestly who cares if their friends and classmates find out that their friend has a mom that blogs but rather i’m concerned with their future. Future colleges, employers and who knows what. There is something that keeps nagging at me and I feel I need to continue on a story that I first blogged about in 2009 on health.mil. My families story about our life with autism. My original blog on health.mil is now gone but you can read it HERE. Six years have past but Autism is still a huge part of our life.
My son is now 12 and will be 13 in a few days…he is in middle school. It is an interesting life. His childhood is remarkably different than that of his siblings. He could use help in the areas of OT and PT still but he does not qualify for those services in school but yet they will comment about his handwriting or his participation in PE. The best was the language arts teacher who wanted me to teach him how to write cursive. To combat his handwriting he uses an iPad in school. When we moved from Texas to North Carolina his new school took him out of Speech. While he has progressed by leaps and bounds his articulation is not perfect and forget it when he gets upset. These things are now a story of finding places that will see him with our insurance and waiting because they have waiting list. Waiting lists for after school appointments are long. Getting one of those appointments is like finding the golden ticket. Social skills are not my son’s forte. He also no longer has social skills therapy in school, they simply do not offer it. I am left seeking out social skills therapy groups for teens which are non existent in this area. My son’s school has suggested I enroll him in this “new” Army program, ABA and when they say that it makes me want to shake my head. The Army program is ECHO (which has been around since 2009) and one of the services provided is ABA therapy, a therapy my son did well with and no longer utilizes. Not because he doesn’t need ABA but he no longer needs it. It is a constant struggle getting schools to cover services. It is often a combination of understaffed and undertrained. I’ve also learned the majority of services for children with Autism outside of school are focused on younger children. Teens and young adults are often sadly forgotten.
There are many differences in our life that are just not the same as those who do not have special needs children. One of the easiest things to see is me, at the bus stop with my middle schooler in the morning. Then there I am hanging out on my front porch sometimes for an hour in the afternoon waiting for his bus to come home. My son is not allowed off the bus without an adult present. Want to know what happens if someone isn’t out there? We get a phone call, a where are you phone call from the school. It’s fun,trust me…not really. Like, we knew the bus was going to be early. Give a parent a break. For my son there are no invitations to birthday parties, no kids coming over to our house to hang out with him and no one inviting him over either. When you have problems with social skills, friends don’t come easy. It is a sad truth. On the other side there are mean, horrible kid’s out there, bullies. They pray on anyone who is different. Despite all the program’s in place in schools bullies still exist. All I can do there is make the school aware and drill into my son that he needs to tell someone when someone is mean or hurts him. Add into this stress for him the pressures of being in class from the lights, to the temperature, to the sounds, other classmates and adapting to changes in routine. Next add in teachers who do not completely understand special needs students and we have a recipe for disaster. While my son does not have behavior issues at home, they are present at school. He has been suspended because his Behavior Intervention Plan (BIP) was not followed and he had a meltdown and he threw a pencil. The situation sadly could have been avoided. My son once liked going to school but since we moved to North Carolina those days are over. Homeschooling is something that keeps entering both my and my husband’s minds and my husband isn’t a huge fan of homeschooling. We have to think of what is in the best interest for our son though.
Over the years i’ve read all sorts of things about how to cure Autism. In my opinion there is not a cure. There are a variety of interventions that are helpful. Some people choose to change their families diets, others add probiotics and others seek out DAN doctors and follow their suggestions. Our family somewhat follows Feingold and we try to limit processed foods. While I am gluten free my son is not but that said he does not eat as much gluten as most other kids his age. Some people use medications to help symptoms while others stay far away from it. We do use medication and it has almost always worked for us. The only time it didn’t was when Target pharmacy accidentally over dosed my son on Prozac and he became manic. Yes, that was a scary time but we got through it, while my husband was deployed no less. Medication can be a risk and it is not a decision I take lightly. It took a few months of trying everything for my son’s anxiety and skin picking before I finally said ok to Prozac. My favorite intervention remains therapy and getting children into Early Intervention Services. While my son was 3 when he began services they helped him in ways that are completely immeasurable. I don’t want to think how our life would be now if he had never had any of his therapies. If there is one thing I have learned over the years what may work for one child with Autism may not work for the next. You just have to continue trying until you find what helps your child.
I am sure this is coming across as whoa is me and i’m only touching the surface but trust me despite all the struggles and frustration and tears there is plenty of good. My son is smart, sweet, kind and funny in his own way. There is so much more to him than his Autism diagnosis his quirks and those pesky awkward social behaviors. It is my hope not for a cure for Autism but for acceptance. I wish for people to look past their diagnosis and to learn who they are. A person is not their diagnosis. Until the day that this happens I will continue to be there for my son, fighting and advocating for him.
Thank you for sharing. My son has autism as well, and it certainly impacts our lives in ways that are hard for others to understand- more than that, ways that simply wouldn’t occur to other people. Sharing your story doesn’t at all sound as if you’re saying “whoa is me”- on the contrary, it’s a story of strength. It’s important to share, both to raise awareness among those who aren’t personally impacted by a special need and to let those who are know that they are not alone. Like your son, mine is awesome, just the way he is. It sounds amazingly clichéd, but that “different not less” Temple Grandin quote always rings true to me.