World Autism Awareness Day: A Journey to Acceptance
I graduated in 2002 with a Masters Degree from Brigham Young University in School Counseling Psychology. I worked for years as a school psychologist for a local district with multiple children and families. I loved my job and still do. I enjoy the challenge of finding what works, but in the 5 years as a school psychologist I felt one of my greatest weaknesses was working with children with Autism Spectrum Disorders. In our Family Education Center the High Functioning Autism class was the only one that I would not ever take on because of my inadequacies in working with that population. I was married in 2006 and my first child came in 2007.
The most beautiful and sweet, little gift of a boy I’d ever seen. In an instant he won my heart. I was going to be the mom that had everything figured out. I played soccer in high school so of course I would be a soccer mom. My husband is a skier, so he would have a little ski buddy. All of our friends were having boys and they would grow up together and be instant friends, etc. All the plans we had for this little guy. He smiled and reciprocated our coos. He acquired language and reached milestones within normal timeframes.
We had a lot of fun that first year dreaming and planning.
At 18 months we noticed some problems with behavior.He had lots of tantrums. Day trips to the zoo, aviary, aquarium ended in tears (his and mine) many times because of this beautiful little boy’s behavior. One minute we’d be having fun the next there was a fit. At 3 years old we excitedly enrolled him in a soccer group. This was going to be awesome! We saw tears and refusal in the first class, but we thought he was just nervous. The second class didn’t go any better. Third, and fourth showed only worse behavior. The attempt to introduce soccer became nothing but fits and refusal. We were done with soccer before the class was actually done. Guess I won’t be a soccer mom…that’s ok. It’s not for him. Fun childhood activities like the merry go round were met with terror and crying. It was more than just slight discomfort caused by dizziness, it was true terror.
We had him tested by an occupational therapist (OT). He was diagnosed with a sensory processing disorder (SPD).
I’d never heard of that. This must be it! This was the answer. SPD and anxiety. That year he also had tubes put in both ears. That was the explanation for the “plateau” in his language. But there were other things I wasn’t sure about. He had a hard time with new experiences/things/schedules and was pretty rigid in how he expected things to go. When he found an interest, he REALLY liked it. A teacher noticed he would get worse when music in Primary (children’s Sunday school class) would start. We used social stories to help him come up with other ways of responding when the sound became overwhelming. It was the SPD. We used picture schedules at home to help his “anxiety”. But social stories and picture schedules are used a lot for kids on the Autism Spectrum… It seemed I was always going through the Autism Checklists in my mind…Eye contact…yes, he gives me eye contact. Social…yes, he can play with other kids. Language…seems appropriate for his age. Anything to convince myself it was something else.
He hated early primary
We had him tested at 4 by the district. He didn’t qualify and they didn’t seem concerned. We had him tested privately when he was 5 and he was diagnosed with Anxiety.
At this point he was in Physical Therapy, Occupational Therapy, Speech Therapy, Therapy and social skills groups in the summer. We were always going to appointments and only the Speech Therapist and Pediatrician seemed to think he was on the Autism Spectrum at this point. I knew, but was still willing to embrace any and all other diagnosis that were suggested. I was driving myself crazy (that’s what my own mother would tell me) trying to will away the diagnosis I knew would cover them all. My heart and brain were always duking it out, it seemed. In all this, there was him. The little boy that had won my heart long ago. He continued to make gains and progress in HIS way.
There was a lot of “he can…”, they didn’t always match things we had dreamed or planned, but they were what he could do and liked to do. Our plans were not “foiled” they just changed.
We worked hard to help him find things to try. Skiing was not his favorite but he could do it a little, but my husband found another passion to share: mountains and fly fishing. They started going camping and fishing together. My husband helped him see how being in the quiet of nature could help him “re-center” when life gets stressful. Facts and science were a strength of his, and since entomology is a big part of fly fishing it became a way of bonding through a common interest.
When my son was 8 we got the final diagnosis of Autism.
It was received with tears, but we had known for so long that we cried our cry and continued on in work mode. We have since found communities on facebook and through the many groups that we have attended or currently attend. The diagnosis I had feared for so many years has become our reality and the support was there.
There are still tears of frustration, sadness, and it still hurts to see social difficulty and a constant struggle of knowing when to push him and keep him from “over loading”, but there are also tears of JOY!
His little smile lights a room and melts my heart.
With acceptance came a drive to become “the expert” and understand, because there is so much riding on knowing what to do to help and how to advocate.
My biggest weakness as a professional is becoming my greatest interest. The one class that I always avoided I helped rewrite the curriculum for last year, based on the needs of my own son and things I have learned from him and his many therapies. He still has my heart and like any parent (special needs or not) I will do whatever I can to help him find success, progress, happiness and love. I will be his advocate till the day that I die. He teaches me so much about patience, love, forgiveness, faith, being genuine and so many more things I didn’t know I needed to learn. I am so incredibly blessed to be his mom.
Here is some of what I have learned and found in my new and wonderfully hard reality.
This is of course not a complete list. When you have a child with Autism, research becomes a way of life. These are just some of the sites I have found helpful information and understanding.
Facebook support groups in SL County:
- BIG MAKS
- Utah Easy to Love
- Autism on The Mighty
- Autism Society of America
- Integrated Learning Strategies I
- Hate to Write
- Autism Council of Utah
- Kids on the Move Child Development and Family Resources
- Social Thinking
- Ellen Nothbohm, Author
Blogs and Websites:
- Autism Speaks https://www.autismspeaks.org/
- The Mighty-just a note…for those parents with “neurotypical kids” this site does a good job helping others understand and helps parents with kids on the spectrum feel not so alone in their struggle. http://themighty.com/category/disorder/autism-spectrum-disorder/ National
- Association of School Psychologist (NASP)-Parents http://www.naspcenter.org/parents/parents.html
- Utah Parent Center http://www.utahparentcenter.org/ http://www.utahparentcenter.org/publications/autism-resource-lists/ http://www.utahparentcenter.org/projects/autisminfo/ http://www.utahparentcenter.org/projects/autisminfo/
- Integrated Learning Strategies http://ilslearningcorner.com/
- Sensory Processing Disorder: http://www.sensory-processing-disorder.com/ http://www.mymundaneandmiraculouslife.com/new-spd-start/
- I Hate to Write http://ihatetowrite.com/
- Dragon Dictation-Dictate stories/compositions for school the email and print. Doesn’t save compositions. Paperport Notes-Lets you complete worksheets on a tablet.
- I Hate to Write
- Out of Sync Child Out of Sync
- Child Has Fun
- 10 Things Every Child With Autism Wish You Knew
- For “Neurotypical Peers” (children not on the Spectrum): http://www.whattoexpect.com/wom/family-life/how-to-explain-autism-to-typical-kids-and-lots-of-others-while-you-re-at-it.aspx https://www.autismspeaks.org/blog/2015/03/09/12-things-i%E2%80%99d-teachers-understand-about-autism
- Neurotypical Video by Adam Larsen (can be found on Amazon)
- Playing By the Rules: A Story About Autism
- I googled: “Autism Picture Books” and got a list.