Parent Letters: It's Never Too Late for an Older Child
By Melinda Alleyne
Our son's story is typical of so many.
Joshua developed normally until his vaccinations at 18 months
old, when he rapidly spiraled out of control. Within three days,
our son was lost to us. Our once sweet and loving boy was
replaced by a child who no longer wanted us to touch him - who
now screeched, banged his head, giggled for hours, and wouldn't sleep longer than two hours, ever. Sadly, Joshua no longer liked his favorite toys, preferring now to sit and rock, or run wildly around in circles. His sweet disposition was replaced with violent seizures.
For months we muddled through life looking for answers on our
own. We tried everything we knew to try and recover our son,
praying that as he got well, he would get better--but little help
was available back in 1994. At best I got sympathetic looks from doctors that mostly said it all: "Give it up lady, no help is out there for your child. You just have to learn how to accept it. He was BORN autistic - you just never saw the signs - it's just
coincidence - etc."
I never gave up hope.
Thankfully ARI existed and I got the privilege of talking with
and being encouraged by Dr. Rimland in those early days before he started Defeat Autism Now! At Dr. Rimland's suggestions, we tried a gluten-free, casein-free diet. We tried melatonin, vitamin B6 and magnesium, DMG, TMG and music therapy--the list could go on and on. We tried ABA, PECS, T.E.A.C.H. and good ole "discipline" to no avail.
We took Joshua to countless "specialists" across the nation, and
yet his seizures were relentless and his behavior was hideous. We spent thousands of dollars. He was evaluated at Keesler Air Force Base (home of the second-largest medical facility in the Air Force), at Emory Center for Autism, at the Judevine Center for Autism, at Philadelphia Children's Center for studies in
Landau-Kleffner Syndrome, etc., etc. We even tried taking our son to see Defeat Autism Now! physicians in their early formative years. Anyone remember IV Secretin for $700.00 a whack? Yes we did that too--twice a month for an entire year.
Joshua painstakingly improved through the years, but we were
constantly reminded that most of his improvements were minor, and our financial debt was great. He was grossly behind in all skills and was increasingly self-abusive, intolerably aggressive, and he remained without any functional language. He was still severely affected by autism.
At 14, we took Joshua to yet another doctor, just hoping he could help him to stop cutting himself. He was so severely lost in self-abuse that it wasn't uncommon for him to have gaping
pus-filled sores all over his skin. We decided to revisit the
Defeat Autism Now! concept of biomedical healing. We had tried this in its early years, eventually becoming discouraged with it as well because it didn't seem to be helping. But we were now desperate.
And this time, we got the miracle we had been praying for.
Day by day Joshua is returning to us. He now has functional
language (around 300 or more words). Just this past year he has learned to make his bed, clean his room, do household chores, ride his bike, skip, jump rope, do puzzles, and play games. Two weeks ago he played with the neighborhood children for the first time ever, while I watched and cried. He is learning to enjoy pastime activities that just a year ago would have gotten us hit had we even suggested he try them. Daily, he is becoming more a part of our family. He is learning to write, and his academic skills have soared these past few months. Joshua is making his own choices about things he wants to do and how he wants his room to look, for the first time ever.
Just as stunning are the things that Joshua is no longer doing.
He no longer makes spit pictures over all our windows in the
house. The walls of his room are no longer painted with his poop during the night. He no longer just lies around wanting to do nothing all day except rip up every book in the house. He no
longer fixates on certain movies, or on us all having to wear
shoes. All of his sleep and eating issues are now resolved. He no longer is self-abusive or aggressive. He is off all psychiatric
medicines and is being weaned from his seizure meds. He no longer self-stims constantly, and the hysterical giggling is gone. He is no longer severely affected by autism.
Every day is simply a new miracle. Our son is now mildly to
moderately affected by autism. And more healing comes with each and every day. I am just glad we never quit believing healing could and would someday happen. In my humble opinion, it is never too late.
Melinda runs on on-line support group for military families. She