2.09.2009

25 Things About Autism

I read this on a wonderfully informative, funny, and helpful blog I have been reading for a few months now http://teenautism.com/ . I thought I'd take her idea which she got off Facebook and give it a go. Thought it might help remind me how far we have come. So, here goes, my 25 list of autism.

1. WHERE DO YOU CURRENTLY LIVE? Belgium just over the Holland border

2. WHAT IS YOUR CHILD’S NAME, AGE AND DX? Kaeden, age 14, autism/ADHD/ODD (though this is just to help get services, so they say)

3. WAS YOUR CHILD PROPERLY DIAGNOSED?Yes, by more than a few psychiatrists. First when he was 8, then again when we moved to Belgium a year later, and once again in 2008 when he was in an inpatient hospital.

4. WHAT DID YOU THINK WHEN YOU FIRST LEARNED YOUR CHILD HAD AUTISM?I already knew somethign was wrong, but the term autism hit me pretty hard. I got the diagnosis a day before I was heading to America on vacation and didn't know what to do with it all. I held up fine until I called my mother and told her...then tears and frustration came flowing out. Why me? WHy him? What am I supposed to do now? (And these same questions still arise in my daily struggle yes, still, with this autism stuff)

5. WHAT IS THE HARDEST THING ABOUT HAVING A CHILD WITH ASD? Not knowing when he is incapable of comprehension and when he is using it to his advantage. The struggles between my husband and I regarding how to deal with him. The susceptible position of my youngest son dealing with his autistic brother.

6. WHAT IS THE BEST THING? How very giving my son is. He does not judge anyone and accepts all people regardless of background, race, religion, handicap, weight... That when we have a good day, it's a very good day for everyone and it really gives us a chance to feel like what I always imagined being a family was supposed to feel.

7. HAVE YOU TRIED THE DIET AND DID IT WORK?I haven't tried GF/CF. I have a hard enough time making it through each day without dealing with something that would cause me spasms...that's not to say we don't limit his intake of certain foods, but not totally GFCF.

8. WHAT ABOUT OTHER BIOMED TREATMENTS- HBOT, CHELATION, ETC.?I have been reading more about this stuff, but I'm not totally convinced and don't know what some of it is. I have already tried so much, and what will make it different this time around?

9. WHAT METHOD OF ABA/Behavior Therapy DO YOU LIKE BEST?Here in Europe, I haven't been given the exact term ABA...but we do use numerous forms of behavior modification. I think that the one that works best is rewarding Kaeden with games, either with us or computer, as he completes tasks which are daily essentials. The problem with Kaeden is that he quickly tires of routine (NOT typical autistic, i know), and these things work out only temporarily in most instances.

10. IF YOU COULD MAKE EVERY PARENT TRY ONE THING- WHAT WOULD IT BE?I don't think any autistic child is the same, so my best advice is to remember that what worked for one, won't necessarily work for another. You have to do what you feel is best for your child and just have faith with yourself. You do what you can afford, both financially and mentally, and you do it for your child. DOn't beat yourself up if you don't try everything out there. You have to make it work best for your family. That's not to say don't try new things...there is always room for improvement. But don't get puilled into having to try every latest new thing. Everything is not going to work.

11. WHAT DO YOU THINK THE RATE OF AUTISM REALLY IS?I just assume what I read is true...1 in 150 in the US. This scares me, but makes me more hopeful that they'll find the cause.

12. HOW MANY KIDS WITH AUTISM LIVE ON YOUR BLOCK?Kaeden. But there are at least 2 others I know of in our small village.

13. HAVE YOU EVER MET A RECOVERED CHILD?No, not yet.

14. WHAT KIND OF EDUCATIONAL PROGRAM DOES YOUR CHILD GET?Kaeden attends a school for handicapped children...all handicaps. Throughout grade school he was in an autism classroom with strict scheduling, but now in middle school he is in a mixed class which seems to suit him a bit better than the structure (yes, again, I know, not typical). He does relatively well in his studies though his behavior gets him into trouble. He is kept in separate areas for breaks and lunch to try to keep teh problems at bay. In his middle school program, he is in one of the lower levels of education. His studies will lead him to work in a social workplace. This is one of the very hardest concepts for me to come to terms with. I want him to be more 'accomplished'...but for me, more than for him. Kaeden reads at a 2nd grade level, but his math skills are much higher (though not as high as his age-level peers are currently at)

15. DO YOU GET SERVICES/TREATMENTS THROUGH YOUR HEALTH INSURANCE?Our health insurance is a government-wide social plan and this does benefit us as a family. Kaeden's services and treatments are always partially covered by insurance, though out of pocket expenses are still astronomical. The biggest problem is the extended wait-list for all services/treatments.

16. DO YOU THINK THE DIVORCE RATE IS REALLY 80% FOR ASD FAMILIES?That is very probable to me. Dealing with an autistic child takes a lot out of you individually, leaving little room to engage in marital relations. Plus, as in our case, we both want what is best for our son, but both have different ideas about how to reach that. And I also find myself needing someone to blame and in my fear and frustration my husband becomes the recipient of my anger. I know this is unfair and I know it isn't good for our marriage, but sometimes it's the only release I can seem to find.

17. DO YOU HAVE A GOOD POOP STORY?No good ones, but plenty of bad ones. Kaeden used to smear until the age of 9ish. That was always such a nice surprise, those decorated walls, blankets, furniture, floors. I don't miss those days at all. Today, he is about 90% daytime toilet trained and still wets the bed head-to-foot nightly, even with diapers.

18. WHAT IS THE STUPIDEST THING ANYONE HAS EVER SAID ABOUT YOUR CHILD?I can't think of any single example. However, I get so frustrated when I am telling people how awful I'm feeling and all they do is remind me how sweet he always is when they're around. Sometimes I just want someone to say "I Know"...even though I know they really don't know because they aren't living it.

19. WHAT DO YOU SAY WHEN SOMEONE ASKS “WHAT IS AUTISM?”I can talk for hours about what autism is, and how it affects my son and our family. Depends how deeply I know the person the level at which I explain it. Currently, I am trying to help my younger NT son understand autism. I think that when he gets big he'll be able to give a perfect one sentence definition having lived it his entire life.

20. WHO IS YOUR “AUTISM COMMUNITY HERO”?I love Tanya'sanswer here from her list. The siblings... my younger son. These kids have to deal with much more than they should have to living in an autistic family. They are forced into situations they should never have to endure. And they come out stronger because of it. I also admire the school counselor who, though I feel he lets Kaeden get away with too much, does everything in the best interest of his autistic compadres. He has been a guiding force in Kaeden's school career from the start, is at all the meetings, and puts his everything into making my son feel loved and involved. I really admire him for his work.

21. WHAT GROUP/ORGANIZATION DO YOU THINK HAS DONE THE MOST FOR THE COMMUNITY?Honestly, in our community, I'm not very happy with any of the organizations that deal directly with autism in which we have been involved. The one I have not yet used but hold a lot of hope out for is the Saturday daycare giving parents of kids with autism a break. We're going to start using their services soon.

22. DID YOU VACCINATE YOUR CHILD AND DO YOU CONTINUE TO DO SO?Yes and yes. I just don't know so just follow the guides. I'd hate for it not to be related and then end up with a deathly sick kid from somthing he could have been immunized against.

23. DOES YOUR FAMILY ACCEPT YOUR CHILD HAVING AUTISM?Yes, I am very vocal about my son's autism and have a very open relationship about it with my entire family, including extended. The majority of them are very supportive in our life with my son. Even those who have difficulties with my son seem to have come to terms with the fact that he is 'different' and are learning to accept that this is just how it is. Most though, do not have a clue hwo difficult life can be, and because they do not deal with it daily can't believe some of the stories I share with them. Others like to remind me (sometimes too often and too heartily) that Kaeden will never be who I dreamed for him to be. But all of them are loving and supportive of my son and our family.

24. WHAT LESSON HAVE YOU LEARNED AFTER ALL OF THIS?That patience really is the key and that patience is easily depleted. I also know that as the mother of an autistic kid, I too often let autism rule my life and overtake every piece of my emotionally. Parents need a break from autism. And couples need to share more than just autism together. And the siblings need to have time away from autism as well. And that when Kaeden is having a bad day, we're all gonna have a bad day. And there's just no getting around that.

25. IF YOU COULD GO BACK IN TIME. WOULD YOU CHOOSE FOR YOUR CHILD TO BE NEURO-TYPICAL?Completely honestly, yes. I just haven't totally come to terms with this whole autism thing yet. I hate how much pain it has inflicted on our family and my son. And I am scared of the future as well. I can't see a future that leads beyond the fights we are having today (not just together, but also with the system, the organisations, the 'help'). If Kaeden didn't have autism, our lives would be much more balanced. I don't wish he were another person, just that the side everyone else always sees was able to be ever-present. That he wouldn't hold it all in until he was safe at home and able to release it all. That I could just be a mom, and not the mom of an autistic kid. Becasue as much as I love my son, it's very hard, draining work. And sometimes, I can't see the end of the tunnel.

2 comments:

Tanya @ Teenautism said...

Tera, I'm so glad you also decided to do the 25 Things list. It's good to read about other people's experiences, even if it is just a nutshell. And I love your answers. They are poignant and real. Your advice about remembering that what works for one autistic child won't necessarily work for another is so important. And what you said about patience is undeniably true - we need it, but it's in short supply when autism is in the picture. Thanks for sharing all of this, and for your kind words about my blog. You are wonderful.

Jade said...

I love this post! I have tons of great autism poop stories!! Haha if you ever need to barrow one just let me know ;-)

Been thinking about you lots lately my friend. Hope you're taking gentle care of yourself.

Big hugs!