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If your child is low on the spectrum?

Posted by on Sep. 29, 2013 at 2:28 PM
  • 19 Replies
1 mom liked this

How do you maintain a positive attitude? He doesn't talk, bites himself, throws tantrums without warning, isn't toilet trained, does not understand any form of danger (heat, running in the street, climbing, etc), does not sleep well.

It's his 5th birthday today and he's getting a couple of wood peg puzzles with the hope he might be able to do them. Besides that, some used board books that he has no interest in reading, just pointing. I'm not excited about today. I truly hate Autism. I don't feel like it makes him an amazing person. It makes him a person in his own little world. I accept he has this diagnosis, but I'm not thrilled. I don't want to wear a bracelet, go on an awareness walk or talk to it about anyone. I have a hard enough time staying awake in the day and keeping a constant vigil over him.

There isn't something amazing he can do like read at a much higher grade level, memorize facts, an amazing artist, etc. He bites himself, points and pokes at everything, and likes to rock.

For some clarification, yes he is going to preschool, getting therapy, on medication, goes to a specialist. Yes, I've been trying everything since he was 2.

What should be a fun day is something he could not care less about. I'm just frustrated and have a very hard time finding anything awesome about Autism when it comes to my son.

by on Sep. 29, 2013 at 2:28 PM
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Replies (1-10):
by Amy on Sep. 29, 2013 at 2:40 PM

group hug  I'm sorry it's been a hard day.

by Platinum Member on Sep. 29, 2013 at 2:49 PM
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Hugs Mama.  I'm sorry you are feeling this way and hope you find the way out of the darkness soon.  Having special needs children is a long road, most of this did not ask for this (some adopt SN kiddos.)  It is just what we were given, so you regroup and figure it out as you go.

I have a severely delayed non-verbal low functioning down syndrome daughter and a lowish functioning son with ASD (he can now finally talk with 3 years of speech therapy but all else is delayed.)  They are 5 so the same age as your child, their needs and challenges are a lot of work.  My life is busy, stressful, exhausting, etc.  But for me, it's not about looking to find the awesomeness in their disabilit, but the awesomeness in them.  I get into their worlds, figure out what they love, and try to enjoy it with them.  I thrive on the awesomeness of my daughter's smile, her giggle, her determination and curiousness, the way her face lights up to watch the Wiggles.  In my son, it is his sweetness, his cuddles, and quirky ability to perfectly line up any like items in sight or point directions to anywhere as we drive.  They will never be the next Albert Einstein, and I don't care.  They won't have the life I may have thought all my children would have, and that's ok.  They are mine, and for me I find a lot of joy in their world and are able to join in their happiness.  I too provide them all the therapies and interventions I can, but in the end, their health and happiness is what matters most to me.  The rest will just work itself out.

I hope you guys get to have a great birthday, and that you can find that thing that connects you to your son's world instead of the disability.  I think you'll find much more joy and contentment there if you can.  I do not know if you are a reader, I am not.  But reading books to teach me about my kids disabilities and the perspectives through their eyes was also helpful.  Best of luck!

by Bronze Member on Sep. 29, 2013 at 6:06 PM

I have an 8 year old who's mod/severe, severe adhd, ODD.  It's exausing to say the least and I cry all the damn time.  But I get through by having faith that it won't always be this way.  I just know that with all this research being done around the planet, they will come up with a viable treatment or cure for these kids.

by Bronze Member on Sep. 29, 2013 at 7:21 PM
As positive as I try to be about the obstacles in my life, I do have days where I just break down and wish things could be different; not for me but for her. I break down because I want the best for her as all moms do and don't feel like I can be or do enough to make that happen. When I find myself in that mood I go online and watch videos or read about the success stories of kids who are thriving inspite of their disabilities, and that motivates me to keep going. I don't know if she will be one of those success stories but I do know that it gives me hope. There's nothing great about Autism but our kids are remarkable in their own big or small ways. I hope you feel better momma; tomorrow's a new day.
by Gold Member on Sep. 29, 2013 at 7:31 PM

Hugs mom.

by Gold Member on Sep. 29, 2013 at 7:36 PM

I will tell you the story of my friend at our church's SN support group...

Her daughter has Willie-pradies (sp?) syndrome. She says that her daughter has/had very severe behavior issues. Biting everyone, manic type behavior throughout her whole life. She thought that she would be taking care of her daughter like this forever. Somehow, there was a gov't program where her daughter could stay day and night and she visits her daughter. Since her daughter has started going to this facility, my friend went back to school, she got her masters, she volunteers playing piano at church events, she teaches, etc. She can do this, b/c she knows her daughter is well taken care of, she says.

I thought it might help if you knew her story.

by on Sep. 29, 2013 at 7:48 PM
Today is my sons 5th birthday too. He doesn't understand but we all enjoyed the pizza and cake anyways. He isn't toilet trained and is pretty low functioning too. He is just finally using more words so he isn't getting as frustrated as he used to. Keep your head up amd don't lose hope. Hugs
by Janine on Sep. 29, 2013 at 10:42 PM
My son has moderate-severe autism. He wasn't potty trained until 5 & had very little words. He's 8 now & has more words than I can count & he's really starting to
comprehend his words. Don't give up anything is possible. (((hugs)))

by on Sep. 29, 2013 at 11:05 PM
Huge hugs. Its OK to hate autism. There are plenty of days I feel this way too. I hate birthdays!!! And Christmas. And holidays in general because what should be fun always ends up upsetting me because of his delays.
by Hadley on Sep. 30, 2013 at 1:33 AM

I can feel your frustration in your words. It can be so discouraging sometimes, especially when I have expectations that something could be normal. I don't really know how I feel about autism, but I know it can be a real pain in the butt sometimes! Hang in there. Tomorrow some of the pressure will be off and hopefully a better day. ((Hugs))

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