What do parents of autistic kids want?

by Tim on August 17, 2010

We want to know that somehow, some way we are strong enough.

We want to see what we are working toward and have the perspective and wisdom needed to get there.

We want quality, clear, and accurate information because we have so little time and energy to think.

We want to know that we’re part of a really great story.

We want to figure out what our kids are thinking about in the worst way.

We want to have some better clue about how our kids see and experience the world.

We want to know we aren’t crazy, and we want other parents to tell us that.

We want to know that others are going through this daily chaos, too.

We want friends who can keep faith in the good and the awesome on the days we can’t.

We want sometimes for people to just shut up and listen to us talk things out.

We want to know that we aren’t alone.

We want the world to accept our children as they are.

We want to be accepted.

We want to go and do things like other families do.

We want to be able to go out in public or on vacations and not spend hours or weeks preparing.

We want people to stop judging us and our kids in public.

We want to feel comfortable in our own skin.

We want to be able to let our guard down for a few minutes and just relax.

We want quiet times where calm reigns in the house and content kids are curled up next to us.

We want to be able to savor every good moment with our kids.

We want allies.

We want acts of simple kindness.

We want more services and less paperwork.

We want the end of years-long wait lists.

We want to know that whatever threatens our children will not overwhelm them.

We want our kids to be safe.

We want to know that we are able to protect them.

We want to be sure that our children will be provided and cared for even after we are gone.

We want a way to keep our children from being bullied, taunted, or made fun of.

We want desperation to be rare and fist-pumping awesomeness to be commonplace.

We want there to be enough money.

We want people not to fight ‘autism’ but to fight against prejudice and injustice.

We want people to seek opportunities to help every child succeed, because we know they can.

We want what any parent wants — the chance for our children to fully live out their potential and their dreams.

We want to kick butt and not just get by.

We want people to know that our lives are challenging, not tragic.

We want everyone to know that our children are wonderful, beautiful, and perfect just as they are.

We want everyone to know that we will fight for our children until our last breath and beyond.

We want the world to know that we wouldn’t trade places with anyone.

What do you want?

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{ 20 comments… read them below or add one }

outoutout August 17, 2010 at 7:29 pm

Ditto pretty much everything on that list. :)

Sam August 18, 2010 at 4:37 pm

Yes, yes, and yes! I was going to list the ones I was especially fond of, but as I went through to pick them out, I realized it was at least half the list.

Great compilation. Thank you.

Casdok August 19, 2010 at 6:50 am

Some good ones there!

S. Donovan August 20, 2010 at 11:06 am

I absolutely loved this! I actually shared it on my blog so others can read. From a young mom with a newly diagnosed autistic child I could not have said it better myself. Thanks for sharing: I truly love your blog it has helped me soo much through this tough time. :-)

Tim August 22, 2010 at 10:00 pm

Glad you all enjoyed it and found it meaningful. I got to thinking about all this after the long summer many of us seem to have been through. Felt like a refocusing exercise for me, particularly one to get me outside my own self-pity party a bit.

Tim August 22, 2010 at 10:08 pm

@S. Donovan – Plan to jump on over to your blog soon. The time of just getting the diagnosis is really, really hard. It’s a time of grief and shock and trying to figure out what to do with the pieces. One step at a time. He is the same precious gift he was before that diagnosis. That’s one truth that got us through a lot there at the beginning.

I wrote the post “The 439 Stages of Grief” a long time ago, but a lot of it still resonates with me. I’m actually in the process of rewriting it some both for possible submission somewhere else but also because my perspectives on grief and parenting and this whole journey have filled in some as time has passed.

It’s something we all have to go through, but we’re all right here in it with you for support, celebration, understanding, a sanity check, cheerleading, and whatever else. I’ll tell you something that has about turned into a mantra and always-needed reminder for me – you are strong enough.

Kamico August 30, 2010 at 9:21 pm

I don’t think I have ever read someone elses writing except for my father’s that has touched me so much. OUTSTANDING!!!!!! Thanks for putting into words exactly how I am feeling.

Jean @ Mommy To Two Boys September 2, 2010 at 2:45 pm

Today, I want no more tantrums. No. More. Autism. Tantrums.

Christine September 14, 2010 at 4:18 pm

Just HAVE to say Thank you so very much for this post…going through the most difficult time with our 10 year old son…he has officially entered puberty (yes a bit early!). I was THAT mom who said no medication for MY son…well after the aggression has reached the level of bring him to the ER we are seeing a Psychistrist in NYC tomorrow to begin the medication phase I so dreaded. Alas…been googling ever free moment about meds, aggression, puberty, and have made myself pretty miserable. Yesterday I find your blog…and can not begin to thank you enough for just giving me some peace that I am not alone and said the words I have longed to hear. <3 :) <3

Tim September 14, 2010 at 10:49 pm

@Christine, Thank you for your kind words. Glad you found your way here and found some peace. That’s what we hope we can do here.

I hear stories from the older grades at school of parents starting into this crazy journey of puberty with their kids. I’m like you in that I feel the dread coming on whenever I think about medication, but given that I take some myself, I know there’s a point when at the right doses for a person it’s not a measure of defeat but of taking steps on a plan of well-being that’s right for them. If, for example, meds bring things under control in the immediate term until you can look at other therapies and talk through strategies with other professionals, then maybe you all can step off the meds at some point if those other strategies work, if that seems right to you. It’s complicated, obviously, and something we know is filled with emotion. Make the best decision you can make that you think is in the best interest of your son given all the information you’ve found and been given. That’s all anyone can ask of you or that you can ask of yourself.

If you would like to share how things go, we’d love to hear about it. Best of luck!

Tim September 17, 2010 at 1:39 pm

Kamico – meant to publicly say how much I appreciate your thoughtfulness. It means a lot to me!

Tim September 17, 2010 at 1:43 pm

Jean – I understand. Our J-Man does pretty well at home and in familiar places, but he completely crashes much of the time in stores now. We used to go all the time to places like Target, now I don’t know what’s happened. I just wish things weren’t so hard on our kids. I think we’d all amen wanting the tantrums and what precipitate them in our kids to go away.

Michele Blanco October 6, 2010 at 8:43 pm

Thank you. You had the words when I didn’t. I was trying to think of how to explain how I felt without offending family members and I found yours. May you have MANY peaceful moments on the sofa with your J-man. You are truly a light on many a dark day.
Single mother of 2 autistic children.
In the words of Grandin – “Different – not less”
My prayers to you.
If you would like to see how I used your words and gave you full credit, go to : http://www.facebook.com/notes.php?id=1415119648&notes_tab=app_2347471856#!/note.php?note_id=479209396479

Brookly's Mom July 14, 2012 at 5:54 pm

This is ALL we want &ask……don’t see Autism as a burden out of ignorance. Don’t give the spirit of ignorance energy. Educate yourself so you can understand Autism. We fear what we don’t understand. Autism may just be a humbling blessing because we take things for granted.

Helen July 30, 2013 at 12:35 am

I want to know how to legally get rid of him. And it is a burden, a huge one and it’s not a blessing any more than cancer would be. I do understand it and I don’t want it or any of the sop from sweet people that don’t. What sane person would.

kmp July 31, 2013 at 9:30 pm

This is directed at Helen….
You are right it is a burden and yes none of us wanted this, but this was what was given to us. Some days I wonder why, but most days I look at this child who has more love to give than most people could understand. It is no walk in the part and nor is it a blessing, but this child is yours to love and fight for and like this post say “wants to loved and accepted”. I didn’t want this still do not, but %$# this is my child and couldn’t get rid of him even if it would make my life easier.

Autism is A Trip July 31, 2013 at 10:18 pm

Helen – if that’s truly how you feel, take your child to the police along with his records, and surrender him. He will be more safe with someone else than with you, I’m afraid, and I don’t want him to become another statistic. Do him a favour and give him the life he deserves, even if you don’t think he does.

Elijah July 31, 2013 at 10:18 pm

Helen- I am writing this in my son’s name, in his honor. Please contact your local Dept of Children and Families. Ask about giving your son up- permanently. Relinquish your parental rights and be gone. Your hateful, negative selfish post says volumes. Your son needs an advocate, someone who will fight for him and most of all, someone to love him. You clearly are incapable of these. Let him go.

Joeymom July 31, 2013 at 10:24 pm

Helen, call social services and ask about adoption or other options to terminate your parental rights. There are plenty of loving families who would welcome your child as their own, and provide what is needed as best they know how.

T-mom December 26, 2013 at 5:02 pm

I’ve been researching and writing and came across this today in December. Helen wrote in July but I want to say something that may not be well received. Helen if you need to do this or if you were able to do this then I commend you for following through with your actions. There was a time I considered it. We cannot control what any of our children do and I came across an incident that I could NOT let happen again involving another child. I do NOT judge you and I believe that there are things that seem unbelievable in our world that cause us to think this way. Giving up your child can truly be out of love for your child. God Bless you and your child.

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