The Road to Successful Outcomes
Colleen Whitman with Danny Boy Whitman
From the Spring 2010 Issue of Autism Health and Wellness Magazine
I Have a Dream
My name is Colleen and I'm here to tell you there is HOPE. My youngest son, Danny Boy, was diagnosed with Autism at 2 ½ years old. He is now 18 and attending College, working toward his degree in Computer Animation.
When I asked Danny what advice he had for Parents of Children with Autism to help them to be as successful as he is he said, “Tell them to be loving and passionate!”
I certainly can't top that. The best advice I got before asking Danny for his was, “Your instincts are there for a reason, you need to listen to them. Nobody knows your child better than you.” Great advice, truer words were never spoken.
So how did we come this far? First, we had to decide what we wanted for Danny.
We wanted him to be a happy, healthy, productive, independent, responsible, thoughtful, safety conscious, law abiding, civic minded, tax paying, home owning, contributing member of society who is not sitting on my couch playing video games at 30.
Whew! No pressure…
We needed a plan
The IEP (Individual Education Plan/Program) offered by his school was a good start but we needed much more. ABA (Applied Behavior Analysis) was highly regarded but expensive. Our state lags far behind most others for funding and services. Danny is STILL on the waiting list to receive services. I had to learn to do ABA myself and did it constantly along with Speech, Occupational & Physical Therapies. Anything I thought might help that wasn’t invasive or dangerous. Diet, Nutritional Supplements, Hyperbaric Oxygen, Sound waves… A word on Programs and Therapies – Again, your instincts are very important here, I was immediately concerned about the way that PECS (Picture Exchange Communication System) was being implemented at Danny’s School. I do believe that these kinds of systems can be useful when used correctly. GREAT care must be taken to ensure that the child doesn't become dependent on them. They should be used as tools and reinforcement, not as a substitute for instruction in Speech and Language.
Why would a child ever bother to learn Speech when they can simply hand you a card or push a button? Break down the word but insist that they TRY to speak. You want a drink? Say “D” once that’s mastered, they need to say “DR” then “DRI” until they are saying DRINK. It’s not easy but today Danny has beautiful Speech and Language.
Some kids may never be verbal but don't give up. I've heard of many people on the Spectrum who didn't become verbal until Adulthood. Always have hope. Here’s a tip to encourage reciprocal language, get them a cell phone and computer. Start with texts and IM’s and work up to speaking on the phone, natural reciprocal conversation. Try it.
Think outside the box or inside as the case may be.
Here’s another tip: Turn on the closed captioning on your TV. Danny taught himself to read this way. He could read anything by age 3. Comprehension would come MUCH later but did come. Seeing the words they're hearing really helps kids learn to read.
Since he was not yet verbal, nobody believed me when I told them Danny could read.
I proved it by writing dozens of words on Post it notes, sticking them all over the Dining Room table and having him hand them to me as I said the word. Use what works! Give kids the tools they need to be successful. Give choices and include them in decisions whenever possible. I also used Natural Consequence, “You'll need to hurry so we'll have enough time to get French fries.” If he didn't hurry, he didn't get fries.
Of course there was a tantrum but the next time he was ready and waiting for us. Foster independence any way you can think of. After basic skills like Hygiene, teach them to order at restaurants, cut their own food, fill out their own medical forms.
I know some may be laughing now, thinking, “My child will never do that!” Don't give up. It’s a process. You may be surprised by what your child can do. I know I was, many times.
Keep them actively engaged but keep an eye out for over stimulation
My job is to educate Parents of Children with Disabilities on their rights and responsibilities under the IDEIA (Individuals with Disabilities Education Improvement Act). I teach everything from Evaluation and the IEP process through Transition into Adulthood. At one of my conferences, we had a little girl who was attending our Fun Camp Program with her Neuro Typical Brother. Her parents told me that her school reported she was “Uneducable”. Among other issues, she was a runner and wouldn't keep her shoes on. At the end of the day, her Brother told me that she never ran or took her shoes off all day. Why? She was actively engaged.
If something isn't working, try something else. We're currently doing a program called RDI (Relationship Development Intervention) with Danny to improve Social Skills.
He’s doing great with it. I wish I'd known about it earlier. Live and learn.
Be firm but fair but also flexible
Recently, after an Agency had spent 5 hours testing Danny for evaluation purposes, he was FRIED. When we went across the street for groceries, he had a MAJOR MELTDOWN right there in the grocery store. People were literally pulling out their cell phones. Under different circumstances, I might have admonished him for inappropriate behavior but after 5 HOURS of testing, I would have freaked too. All I could do was give him a big hug and tell him everything would be ok. I just held him until he calmed down, eliciting the stares of onlookers, then we got the heck outta there before the authorities showed up! For the record, they told me the Evaluation would take an hour and was necessary to determine eligibility for College Funding. I always had to push hard to get Danny what he needed. It does get easier. Now it’s like breathing for me.
Encourage their gifts
We determined that Danny had aptitude and interest in Art and Computers. We made sure to get him whatever instruction we could and include this info on his Transition IEP and Post School Outcome Statement. We brought in Agencies who could help such as DVR (Division of Vocational Rehabilitation) and never took no for an answer. We took every opportunity to educate others when needed and always tried to be collaborative and proactive rather than adversarial and reactive. Not always successfully, but we tried. It’s all worth it in the end. There were times that were harder than I could have ever imagined but in the end I feel rewarded and blessed. I know I've had a richer more fulfilling parenting experience than many parents who only get to raise Neuro-Typical children. Danny has a brother and sister and when they walked and talked and rode a bike, it was great but when Danny, my son I was told would NEVER do those things did them, the Earth moved. I wept tears of joy. It’s a Religious experience that other parents just don't get. Sometimes I actually feel sorry for them. We never gave up and it’s paid off big!
My name is Colleen and I'm here to tell you there is hope.
Artwork by Dan Whitman
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