Finding Support
I mentioned in a post a couple of days ago, that my recent search for help and advice with Jack had people asking me where we usually turn for help and assistance when things get tough or ‘challenging’ or when we just need to talk through stuff…..
A friend of mine spoke to me recently about the troubles that she was facing with people close to her - that they were insensitive to her and her child in relation to her child’s autism. She was becoming increasingly upset with the thoughtless remarks, and was at a loss as to what to do and how to approach the issue with these people… particularly when many of the insensitivities were displayed in public and she didn’t want to cause any problems between herself and these people…..
And I posted a while ago on a topic that many parents of children with autism face - that of being judged by others, and the grief of self judgement.
So all of this has had me thinking… when times are difficult and especially challenging with our children, when people are insensitive to our needs and our children’s needs, and when we’re going through the times of self-judgement and judgement from others - where do we go for support, and who do we find support from…?
… and then how do we deal with the unsupportive influences in our lives…?
I am very fortunate to have my parents who are very supportive of Jack’s needs and our needs as a family. I also rely heavily on my blogging friends for a support network of others who are facing similar things in their lives - and who are very generous with advice and support! I visit an online forum when I can, and I do have a couple of friends who I can call on for a ‘chat’ when things get tough and I need a friendly understanding face.
And of course, there are a couple of people close to us who really have no interest in recognising Jack’s Autism Spectrum Disorder, or maybe they do recognise it, but they just don’t stop to think that perhaps their thoughts and actions (or lack of thought and action) are hurtful and unsupportive…
But where else does the support come from?
Some of the professionals and therapists we have worked with over time have been incredibly supportive - both practically speaking and from an emotional aspect as well…
… but what do people do, and where do people go when they have little support around them?
… and how do people handle others around them who are totally insensitive… surely there must be a way to deal with the thoughtless remarks whilst still maintaining some sort of relationship with people.
I’d really love to hear people’s thoughts and ideas on this… for myself, for my friend, and for all of us…
… after all, we all need support. 
February 8th, 2008 at 4:37 am
I’m really very lucky that the vast majority of my close and extended family have been a great support to us.
I’ve also got some very close friends who are an amazing support both to me and my girls (”S&J” who I mention occasionally in my blog).
With Heidi starting Kinder this year I wasn’t sure what to do and decided to be up front with all the other parents about her special needs. Seems to have worked really well so far. We’ve got a list up on the fridge door of Heidi’s key words and phrases to help the parents who are on Kinder duty.
So far we’ve only had two real problems crop up. The first was a gentleman at Church who told me I should smack Heidi for being naughty during the service. By naughty he meant she was talking to herself. I had a word to Pastor who said Heidi wasn’t a problem from his point of view. Still we don’t go to Church very often anymore because I hate the old guy staring daggers at me all through the service.
The other problem is one sister-in-law and her husband who can not understand and think I am over reacting and there is nothing wrong. I emailed all our family when Heidi got into Kalparrin Early Intervention to celebrate our great news. Problem SIL reply was “and this is good?”. Mind you this is the same family who think it is okay for a 2 year old to drink a bottle of beer and a glass of port which I will just never understand. So far just ignoring them has worked well.
Autism Victoria have provided a great support service, especially when I need a point of view that is not so intimately involved in Heidi’s day to day life.
I’m looking forward to starting at Kalparrin next week, especially to finding out about the parent support sessions they offer. There is a sibling support group also which I hope Annie can get in to.
My one gripe about sibling support is that no where seems to offer support to siblings who are not yet in school. Just because she is not in school yet doesn’t mean that Annie doesn’t feel frustration / upset about her sisters differences and need support.
February 8th, 2008 at 4:40 am
What was I saying about Annie?…. Had to stop posting because she was throwing up in the toilet because in her words “I vomited because Heidi had to go to kinder on her own and I was worried”
That makes me really sad and I have no idea how to support Annie on my own.
February 8th, 2008 at 11:19 am
Its a difficult one. My family to put it politely are useless! I lost most of my friends when C was diagnosed. But have made some super friends with other mums of special needs children.
Because of the severity of Cs headbanging i do get very good support from Social services.
As to insensitive remarks, you do grow a thick skin. But sometimes it isnt enough.
February 8th, 2008 at 2:58 pm
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!!
February 8th, 2008 at 3:12 pm
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.
February 8th, 2008 at 8:21 pm
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
February 8th, 2008 at 9:07 pm
I’m linking to this post! Thanks for addressing this…
February 8th, 2008 at 10:17 pm
Updated an old post for you today at my blog. Best wishes–jml
February 10th, 2008 at 7:34 pm
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!
February 13th, 2008 at 8:32 pm
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.
February 20th, 2008 at 8:01 pm
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!
February 21st, 2008 at 4:07 am
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….
May 14th, 2008 at 1:25 am
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.