Comments on: Finding Support

By: Janis Korkos

Janis Korkos — Wed, 14 May 2008 01:25:21 +0000

My aspergers, bipolar son is now ninteen, even though married to a Greek Orthodox Priest for seventeen years, who was in denial, said his son was just a little slow, I have done it all alone.

I had my first son at age forty and Nicholas my wonder at forty three.

Now living in SWFL, there are very few programs for the autistic in this area. He was denied an aide for a normal class.

On one side of his brain he is about ten years old and on the other side Einstein. He uses words I have never heard of.

When I got Nick a private reading tutor at age six, which he continued weekly for three years my husband at the time said why are you spending that money on him you know he will never be anything.

Divorced ten years ago which took me ten years as the Church wanted me to stay married and be an example to the community.

Ex is now a marriage counselor with no contact with either child. The older one is in the USAF.

The fight for an autistic child is daily, especially in SWFl, at this writing they want to take the bus away from disabled people.

If there are any questions I can answer for you kindly contact me at Livingunderthet@aol.com.

Thank You Autism is a blessing.

By: Jen P

Jen P — Thu, 21 Feb 2008 04:07:31 +0000

Hey, just came back to read what others have said. I don’t think many in my family “get it” or maybe they do but they don’t know what to do and they default to what is comfy to them but is not appropriate. I had an argument with my mom today about playing with popcorn. My response to her “I can’t believe you let him play with food” reaction was, “I can let him play with it here for free or I can pay an OT and let him play with food there…” It was popcorn for pete’s sake! Not raw chicken! Deeeep breath….

By: kristi

kristi — Wed, 20 Feb 2008 20:01:02 +0000

I have had it out with some of my family members…even recently my sister made me mad because she wouldn’t stop teasing TC and I told her to stop now! My inlaws don’t really come around but then again, they never have. My Mom is somewhat supportive but she is 5 hours away. Certain teachers at TC’s school are awesome and his Occupational Therapist has been OH SO HELPFUL!

By: misha_k

misha_k — Wed, 13 Feb 2008 20:32:25 +0000

A lot of the support I get is from family, friends, teachers and paras, and the doctors and therapists who work with J.

My family is amazing. They embrace J for how he is and accept everything about him. My dad and brother don’t quite “get it” sometimes when it comes to J but I know they love him and they DO try.

All of J’s teachers, paras, doctors and therapists are people I’ve become good friends with. They’ve always been there for J or I whenever we’ve needed them.

My friends are great. I’ve lost a few but I look at it as they weren’t true friends to begin with.

Another area I have lots of support is from the people who are the case managers from various county agencies. I never thought I’d be able to call one up to discuss something and it ends up in a long conversation. These people genuinely care.

I can’t forget the people here when I blog. This is one of the biggest comforts knowing there are other people I can connect with about autism.

By: LAA and Family

LAA and Family — Sun, 10 Feb 2008 19:34:24 +0000

I have varying levels of supportiveness from family members and from a few friends. My husband’s sister has been terrific in helping us out when I had my 2 children after Samuel. My parents are wonderful listeners when I need to vent. They also do a great job reaching out to Samuel when they visit, but it’s not easy! My brother has a son who is autistic. We talk to each other from time to time but we’re both real busy with our children! I have a very good friend here who is such a help in that her boys are friends with my NT kids. She and her husband are also very understanding when Samuel causes trouble at their house. Outside of that, it’s my acquaintances in blogland that are a wonderful support to me! I don’t know what I’d have done if I hadn’t come across this “community” in the past year!

By: Julie L.

Julie L. — Fri, 08 Feb 2008 22:17:01 +0000

Updated an old post for you today at my blog. Best wishes–jml

By: Jen P

Jen P — Fri, 08 Feb 2008 21:07:55 +0000

I’m linking to this post! Thanks for addressing this…

By: fw2

fw2 — Fri, 08 Feb 2008 20:21:36 +0000

Support is something I don’t need. Not the “hold my hand, please” kind. I did finally last spring go to the Support group and finally my FSW stopped sending me their meeting dates. “Woe is me” they were really annoying and those who had kids older than mine were actually rather pissy at the level of documentation/services I had already. Tough. Then there was the mercury Mom… went downhill from there.

Autism Ontario is pro-behavioural modification - We were in that program for 8mths. My 6yr old has forgiven me…. I haven’t forgiven myself. I have no use for those that think ASD children need to be cured b/c they are broken and behaviourally modified when they should be advocating a proper education and not to “judge autism by it’s cover”.

So… they’re out.

I have a couple of adults and teenagers that babysit for me. I did the “well some kids don’t speak until they are older” crap with the inlaws… they got over it. I just ignored it and kept doing what I was doing.

I have friends I go out with, and truth is, when I’m with them… I’m not into “autism”. I don’t wish to discuss it. There is more to life than Autism. We may live WITH, but we don’t live FOR IT.

What I need is services support, and I finally have all my t’s crossed and i’s dotted there… still doesn’t always run smoothly. SLP’s (school and private) and OT’s in classrooms, Ed assistants, respite funding, extra-curricular programming that accepts ALL children.

Depends… do you need a shoulder to cry on, or services. For me, it’s services.

Sheri

By: Lou

Lou — Fri, 08 Feb 2008 15:12:45 +0000

Annie and I have been blessed with this wonderful child with some strange (and sometimes irritating) habits. We have each other - me and Annie and Zach. And, fortunately, it seems we’ve been able to foster some understanding in others. We have had to deal with some teachers who were, for lack of a better description, unforgiving, but for the most part, the medical, professional and educational staff we’ve encountered in our journey with Zach have been helpful and understanding. Family has been another issue, from time to time, but it is so spread out that we don’t often encounter each other so the impact of prejudices they may support has been minimal. And now Zach is in a school where they are ALL geeks, all brilliant - all special. So he doesn’t stand out like a sore thumb anymore. He fits in. And he has blossomed and prospered. Of all of the issues and people he has encountered in his life, it has been his contemporaries who have caused him the most bother. And now that he is in an environment where his contemporaries are just as blissfully unaware of their surroundings as he is - they don’t look for the ‘oddball’, single him out, verbally, emotionally and physically abuse him - he feels safe to be himself.

And as for YOUR Annie - it sounds to me like she has enough ‘awareness’ and ‘empathy’ for both kids. Just tell her how proud you are of her and how happy you are that she is so concerned about her sister. And tell her that Heidi will be fine - that this is part of growing up.

By: Marla

Marla — Fri, 08 Feb 2008 14:58:56 +0000

We have lost lots of friends and I would say that visually M does not appear to have that many difficulties, at first. That could be why many friends just don’t get it. Over time they don’t want to hear about it and it really upsets me when they don’t offer any supportive words or go on and on about every little achievement their children are making and then act bored when I talk about M.

But, complaining does not help the situation. I guess I have found it is easier to let friends go and distance from family that just does not get it. I don’t have the energy anymore to put up with dumb comments.

We even turned to homeschooling in a sense because we were so tired of trying to help teachers get M. I needed a break, I think.

Trying to educate is always good but some people won’t take the time to read or listen. Argh!!