Guest Blogger: Jami of Mom’s Flight School

Asperger’s Syndrome-Blessing or Curse?

 

 

Although the term is becoming more common, most people still have never heard of it. Hans Asperger, in 1944 discovered a special set of symptoms he felt to be a form of autism. In 1981, an American researcher published a paper on this condition, calling it Asperger’s Syndrome and it became a diagnostic classification in 1992. It’s no wonder we’ve only met one employee of our school district who is truly familiar with this developmental disability. Something amazing to do is “Google” famous people with autism or Asperger’s Syndrome…the links to be found are eye opening.

 

 

For us, it’s been both a blessing and a curse, depending on the moment in time and our attitudes. Getting to the diagnosis was the most difficult part…getting it when he was “older” at 12 felt tragic on some days-we’d lost so much time. Early intervention can do so much to improve the daily lives of these kiddos! I could go on and on about the heartache we have lived through over the years because of autism. There have been times I hated the word autism.
At times I have honestly felt that, were it possible, I would give both of my legs away in trade for my son being free of this developmental disability. He is amazing, but he has to work twice as hard as his 3 siblings to get through a day. I’m so thankful he came in this wonderful “set of 4”; I think being quadruplets has somehow helped create the wonderful compassion that they have for each other.

 

 

 

Oh, they still argue like all kids, but his siblings have been so wonderful and I believe are stronger for having to go through what we have as a family. We are all stronger, but there are times I’ve felt war torn and believe I have experienced symptoms of Post-Traumatic Stress Disorder after a few of our most trying times. I think many moms of special needs children do, especially if there are “big events”, such as a child with autism lost in the woods (sixth grade) for a few hours, or having not come home after a “short walk to cool off” and escorted home by an officer at 2 in the morning (8th grade).

 

 

Instead of relating story after story, I’ll briefly run down what autism looked like in our son’s life:

 

Baby: fussy, very fussy

 

Toddler: crawled away from siblings a lot, independent, fussy, head banging, good speech, but seemingly impossible for him to understand action and consequence as his same aged siblings did

 

Pre-K through grade school: many difficulties in the classroom, constantly in trouble, began the “fight or flight” running away, countless calls from the school/principal (amazing lady), and “no fear of danger” which spurned him on to sneak out and wander in the middle of the night for “adventure”

 

Middle School: a couple of citations from local police (one incurred with the “help” of a non special education teacher escalating his anxiety), school difficulties lessening in quantity, but not “quality” in intensity, some running away, we still knew the principle better than most parents, and many sleepless nights from general worry. We discovered a wonderful caseworker/angel at the Department of Developmental Disabilities (help we hadn’t known was there before)

 

Freshman: less school difficulties and calls from his teacher (another amazing lady), achieving a 4.0 (at a lower grade level and with a lot of support), memory problems, the necessity of a home alarm installation to keep him from seeking adventure at night, and he is still maturing (his emotional age feels like that of an 8-10 year old)

 

Having a child with special needs changes you; there is no getting around it. I’ve tried to keep focused on letting it change me for the better. There are days when you feel so isolated and alone, though, it’s hard to see the light at the end of the tunnel…or difficult to believe it’s not just a train coming at you head on!

 

I would be greatly remiss, in my journey as an autism mommy/burgeoning autism advocate to let this chance pass without sharing my most important bits of advice.

 

Things a mom must know if you are trying to find out if your child has autism:

 

1) Trust your gut as a mother. So many people, educators, alleged “autism specialists” friends, and family members all had an opinion on our son, some good, some right, and some just so way off. Don’t let anyone’s criticism sway you from searching, digging, researching, and seeing the appropriate professional help you need to get your answers. YOU are your child’s mom and greatest advocate. If I had been stronger than the criticism and trusted my own gut, we’d have gotten him a real diagnosis much sooner. I knew deep down something wasn’t right, but trusted others too much. 

2) If a school does an evaluation, do ask the person in charge of the evaluation (autism specialist in most cases) “Do you have a degree in Special Education?”

Why ask such an obvious question? Our “specialist” in this district does not. She received her job after dropping a lawsuit against our district to provide appropriate services for her child with autism. Just because I am a mother of a child on the spectrum, I am not qualified to evaluate your child without earning proper credentials and getting fully educated with a degree. Some schools may hire unqualified people and not tell you. If I had known, many things would have gone differently, but most of all, I’d have seen a pediatric psychologist sooner. I cancelled an appointment we had scheduled with said doctor after this “specialist” told us our son was not autistic because “he can make eye contact”.

3) Do not stop researching, digging, or meeting with doctors until you are at peace in your heart. Take copious notes on your research, at IEP meetings, and save all emails from your district staff and teachers.

 

 

It may sound overly aggressive or cynical, but honestly, it comes down to the law and you will need facts to get your child the services that are right and due him. I’ve always been a very trusting of people and a positive thinker. I was the mom bringing snacks to IEP meetings and feeling so grateful they would come to a meeting for my son-not really understanding back then that it is part of their job and they have to. There is a place for that, but if you are in a school district that is not amazing towards special education, you will need to be in mama bear mode. Not harsh or rude, but wise and strong. Our district seems to rely on parents being in the dark, it makes their job easier. Oh, they do hand you a booklet on special education law and your rights, but they rely on parents being clueless as to how those laws are interpreted and how they are carried out. “Social mommy” goes out the door at IEP meetings and “lawyer mommy” is the one who should walk into meetings! 

Our children are our greatest gifts in this world! I wish that no more children would ever experience hardship because of something out of their control. It’s just not so in this life, so it’s up to us as adults to model strength for them and to encourage them to reach for more than they ever think they can do. It took me about 38 years to learn that for myself! It is my greatest hope and prayer that each family will find the information and knowledge they need to find to help their children and that the trials of this life will bring them closer as a family.
I once thought autism to be a raging, ugly animal, seeking to destroy us. Now I can see it is more like a journey. We are trekking to a new land together and having to learn to do things differently and to be stronger than we ever thought we could be. One of my favorite sayings about autism is one I heard Temple Grandin speak at a conference last summer. She said, “If it wasn’t for autism, we’d all still be sitting around a fire outside our caves.” My verdict is blessing, even though it’s taken some time to change my mind about it!

 

 


~Jami 

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One comment

  1. Barbara Manatee

    Thanks for sharing your story Jami. I am a teacher for kids with Autism. I'm appalled by the instance of your district not having a qualified evaluator! I commend you for fighting for your son's education and needs. It is so important for parents to educate themselves.

    I blogged the entire month of April for Autism Awareness if you'd like to stop by!

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