We Have Come a Long Way
September 09, 2013
Tristan was born in November 1999 after a wonderful and uncomplicated pregnancy and delivery to a first time mom. He breastfed immediately and the first few months after he was born were “normal” per all the baby books I read -- no colic, sleeping well, normal looking and smelling bowel movements, and no unusual fevers or ailments whatsoever. Other than the well baby visits and immunizations (one dose, thimerosal-free) and one ear infection, all was well for the first four to six months.
All that changed at Tristan’s 9-month checkup. He still had no vocalizations, pointing, or engagement with other family members or other play group babies. The pediatrician also noted that he would not respond to his name or look at her, although he had no problems engaging with me. She brought out the autism checklist and stated that she wanted to watch Tristan and reconvene with us at his 1-year checkup. I went straight to the internet and googled everything I could on autism. In the year 2000, there was still so much outdated information on this diagnosis and not a lot of positive outcomes to be found.
Between the 9-month checkup and 18 months of age, Tristan had three more ear infections, which was very concerning to both the pediatrician and myself. Thankfully, she had a wait-and-see approach even back then and did not automatically give my son antibiotics. At the 12-month checkup, it was very clear that Tristan had quite a few signs of autism per the checklist. He went straight into early intervention through California’s Regional Center system, meaning he was “officially” diagnosed by their expert and given Speech Therapy, Occupational Therapy, ABA and other services that allowed us to address his needs at a very early age. We were so very fortunate that Tristan had a pediatrician who was so well versed in the signs of autism back in early 2000 (way to go, Dr. Lisa Stern).
I am thankful every day that we got the diagnosis so early and lived in California, where the Regional Center system was set up to address the needs of our kids. As I write this article now, that same system is much harder to work with and get services for our kiddos, but it sure beats other states that have no state-mandated systems in place (like Colorado, where we are now).
The school age years were nothing if not difficult as the school district’s thinking was first to move the kids into special education (a more restrictive environment) rather than focus first on what could be added as supports and services to a regular educational placement (least restrictive). Having a 1:1 Aide so that he could be around typical peers has made all the difference for my son. He needed to learn behavioral and social rules and proper use of language proper peer models.
Having said that, I pulled Tristan from public school in Kindergarten and sent him to a wonderful Montessori school that had typical peers and a wonderful sensory-based curriculum. He thrived in that environment for two years, until we moved him into a small Christian school that had a combo classroom of Grades 1-4 with 14 typical peers. Each child had a cubby with side inserts so kids did not have visual distraction. The curriculum was not one huge book per subject, but 12 workbooks per school year, so 12 small tests versus larger chunks of info, and the workbooks were also highly visual...again working towards the strengths of kids with autism. Tristan was the first kid with autism in all three schools he attended since 1st grade, but with loving staff, understanding parents and awesome kids in the classroom, he is well on his way to being able to achieve what I want most for him -- a happy and healthy life filled with loving family and friends and community supports to allow him to be a productive part of society. My mantra has always been “If it doesn’t exist, then help create it.”
I remember sitting in my living room when he was probably five or six years old, having a pity party all by myself (hey, we all need to have one of those every now and then!). I was thinking: will he ever be able to a) talk or just say I love you, mama; b) have friends; c) go see a movie in a movie theater; d) go out to dinner in a real restaurant; e) go on a vacation that involved flying in a plane; f) go to church services; g) attend a concert, play or ballet; or h) go skiing. Now all these years later, we do all that and more. Of course, it did not just happen overnight. Without the biomedical intervention that started when he was 7 ½ years old, we would not be where we are today. Tristan had huge amount of metals in his body that required a DMSA protocol, including tons of blood draws over the years, and continued supplements and protocols from our MAPS doctor.
Without my TACA parent mentor and awesome TACA seminars, I would not be where I am today. Tristan’s progress has involved hours, weeks and months of practicing behaviors, social stories, and the understanding staff at our local restaurants and movie theaters. Family members and friends have all had the patience of Job in helping Tristan as well. We had a great sweatshirt that said “I HAVE AUTISM, WHAT’S YOUR EXCUSE!?” We had him wear that the first few times we would go someplace new. It was helpful as it not only allowed people to laugh with us a little when things got rough, but also gave them a chance to come up to us and ask questions or just give him the benefit of the doubt when the behaviors took over.
Tristan is now in the 8th Grade. He has had a lot of change recently since we moved from sunny southern California to the snow-capped Rockies of Colorado. We found a wonderful small Christian school with 14 typical peers and a great 1:1 Aide, which mimics the placement he had back in California.
We have come a long way since he was first diagnosed by his pediatrician at 12 months of age. This is a boy who was non-verbal until almost 9 years of age. Throughout his younger years, he had severe tantrums of pulling hair, scratching and biting. We have had so many “professionals” tell us over the years what he will never be able to do, but he has hit all the milestones and more of what “they” said he would never be able to do.
If autism was the only thing we had to deal with these days, Tristan would be considered a quirky kid who loves maps, directions and GPS systems. Because of the secondary diagnosis of severe oral apraxia, he is still struggling with expressive language and intelligibility. He will repeat himself and revert to spelling words when people do not understand him. And behaviors still exist…let’s not kid ourselves…welcome to puberty. Between school, taking his current 30+ plus supplement pills per day, speech therapy, occupational therapy, and ABA, he remains the hardest working kid I know, but hey, that’s our life and we embrace it fully!
With props to Oprah, here is “What I Know, the Autism Edition”
- Doctors do not always know what is best. Listen to that mommy gut and ask, ask, ask questions!
- Cut loose people in your life -- whether friends or family -- who have only the negative to share. This journey is a marathon, not a race, and you need all the positive vibes and reinforcements that you can get.
- It is okay to cry after your kiddos are in bed…really, it is. Then pick yourself up again to be the best cheerleader, advocate, parent you can be for your special kids. And a glass of wine or some chocolate may help as well.
- Set your goals high for your special child and modify down, not the other way around.
- It takes a country, not a village, to raise our children -- ASK FOR HELP.
- Yes, a mani/pedi is an essential for all your mommies (and daddies) out there. Giving yourself permission to do something nice for yourselves on a regular basis is key to keeping your sanity and positive attitude. Guilt is not helpful in any way, shape or form.
- Yes, you can go it alone as a single parent if you have to -- many of us have and you can, too.
- Love yourself and give yourself a high-five daily. This is your life now in all its multi- faceted, “this is so not what I expected” kind of way!!