I’ve seen this floating around Facebook lately and have decided to post mine here:
1. WHERE DO YOU CURRENTLY LIVE?
Oregon, USA
2. WHAT IS YOUR CHILD’S NAME, AGE AND DX?
Nigel, age 14, Autism
3. WAS YOUR CHILD PROPERLY DIAGNOSED?
Yes, twice. First time right when he turned 3, and again at age 5, for insurance purposes.
4. WHAT DID YOU THINK WHEN YOU FIRST LEARNED YOUR CHILD HAD AUTISM?
I was confused. Back in 97, when he was first diagnosed, all the information I had on autism was archaic. It said that autistic children sat in a corner and rocked themselves all day long. Nigel did not do that. But I quickly came to understand that autism manifests itself in many ways.
5. WHAT IS THE HARDEST THING ABOUT HAVING A CHILD WITH ASD?
The ignorance of the general public, and the bullying my son has endured. When he was younger, Nigel would have screaming meltdowns in grocery stores, public restrooms, etc. because he was in agony due to his sensory issues. People usually glared at us or made comments about “controlling” him. Also see #18 below. This is one reason why I blog about autism.
The hardest thing for my son has been the bullying. He has endured so much from mean, uncaring kids. And when he tries to defend himself, he ends up getting in trouble. I ended up homeschooling him because of the bullying and his anxiety that resulted from it.
6. WHAT IS THE BEST THING?
My son has an amazing mind and an engaging personality. Anyone who takes the time to get to know him – and to be patient with him – likes and appreciates him.
7. HAVE YOU TRIED THE DIET AND DID IT WORK?
Assuming this refers to GF/CF, yes, we tried it. Nigel does not seem to have the gut issues that others with autism have, so it didn’t work for him.
8. WHAT ABOUT OTHER BIOMED TREATMENTS- HBOT, CHELATION, ETC.?
The thought of chelation scares me, and I’m not familiar with HBOT.
9. WHAT METHOD OF ABA/Behavior Therapy DO YOU LIKE BEST?
Nigel had modified ABA-based therapy (and OT and speech) from the ages of 3 to 6, 4-5 days a week with two weekly home visits. We were fortunate that he had a positive response. I believe that is a key factor in how he is able to function today. After that, he continued with speech and some behavioral therapy over the years.
10. IF YOU COULD MAKE EVERY PARENT TRY ONE THING- WHAT WOULD IT BE?
Try not to be bitter. Sometimes, like when they smear blood from a bloody nose all over a room, or when you just have to pick up some milk at the grocery store and they’re screaming and bolting, or when they burn holes in the couch using a magnifying glass, or when the school has called you for the third time this week because of behavioral issues, or when you’re worried about their future, it’s really hard not to be bitter. We didn’t ask for this. No one does. But being bitter won’t help you; it just builds up and makes you feel worse. It took me a while to figure that out.
11. WHAT DO YOU THINK THE RATE OF AUTISM REALLY IS?
No idea – I try not to dwell on statistics too much.
12. HOW MANY KIDS WITH AUTISM LIVE ON YOUR BLOCK?
Just mine.
13. HAVE YOU EVER MET A RECOVERED CHILD?
No. It’s not a mental illness. It’s a different neurology, a different way of processing.
14. WHAT KIND OF EDUCATIONAL PROGRAM DOES YOUR CHILD GET?
Nigel is currently homeschooled for the past year, but we are in the process of having him go back to mainstreaming part-time.
15. DO YOU GET SERVICES/TREATMENTS THROUGH YOUR HEALTH INSURANCE?
some
16. DO YOU THINK THE DIVORCE RATE IS REALLY 80% FOR ASD FAMILIES?
Possibly. I’m divorced, but not because of the autism.
17. DO YOU HAVE A GOOD POOP STORY?
With his sensitive olfactory glands, Nigel never sought to do much with his poop except flush it. Prior to toilet training, he touched it once, and apparently that was enough. Blood, on the other hand, is a different story.
18. WHAT IS THE STUPIDEST THING ANYONE HAS EVER SAID ABOUT YOUR CHILD?
A co-worker of mine once said to me, “Having an autistic child must be easy.” I thought she was being sarcastic, maybe, but I asked, “Why do you say that?” She answered, “Because they’re so quiet.” I tried very hard to be calm as I said, “Just because some of them can’t talk does not mean they’re quiet!”
19. WHAT DO YOU SAY WHEN SOMEONE ASKS “WHAT IS AUTISM?”
I talk about the spectrum, that it’s neurological, that the jury’s still out on the causes, and I talk about how it affects Nigel.
20. WHO IS YOUR “AUTISM COMMUNITY HERO”?
I have said before that siblings are the unsung heroes of autism. I am so proud of my younger son Aidan and what he has experienced with having an autistic older brother. Please read about him here. And here’s another wonderful sibling. I’m sure there are many more. All of them have my love and admiration.
21. WHAT GROUP/ORGANIZATION DO YOU THINK HAS DONE THE MOST FOR THE COMMUNITY?
Not sure if this question refers to my own community or the autism community at large, but I am glad to be a Chapter Rep for the Autism Society of Oregon. They host many helpful seminars and awareness events, and I’m proud to be a part of it.
22. DID YOU VACCINATE YOUR CHILD AND DO YOU CONTINUE TO DO SO?
Yes, I did. Fourteen years ago most people didn’t question vaccination. But I continued to vaccinate him, because God forbid he contracts meningitis.
23. DOES YOUR FAMILY ACCEPT YOUR CHILD HAVING AUTISM?
Yes, they have been very supportive and loving. I am blessed.
24. WHAT LESSON HAVE YOU LEARNED AFTER ALL OF THIS?
I’ve learned that there’s still so much more to learn, and to do. Certain challenges can change with time and therapy, but other challenges take their place. And we’ll face them.
I’ve learned that even though sustained bitterness is detrimental, it’s okay to be sad sometimes. We’re human, after all. All of us. And we’re just doing the best that we can.
I’ve also learned that patience and a sense of humor and an occasional glass of wine will help immensely.
25. IF YOU COULD GO BACK IN TIME. WOULD YOU CHOOSE FOR YOUR CHILD TO BE NEURO-TYPICAL?
If I had answered this questionnaire years ago, when it was so hard just to get through the day, I might have said Yes. Now, I say No. I can’t imagine Nigel any other way. But I think, after all these years, that even if he had not learned to filter his sensory issues and started talking, at this point I still wouldn’t want to change him. People with neurological differences are amazing regardless of their functioning level.