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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

My son has autism. I want to scream it from the top of a mountain

Posted by on Feb. 15, 2013 at 8:28 PM
  • 14 Replies
My son has autism. I want to scream it from the top of a mountain or standing on top of a table in a crowded room, but my husband is not ready. The developmental pediatrician, whom I have deemed "the magician" needs to meet with us again and watch my son bop around the room like a pin ball to deem him "autistic." I am his mother. I am with him every day. I have read book after book, web page after web page, I know that he has it. Somehow, my husband believes that this magician is more qualified to make this call than me, but that is ok. I suppose he his not ready to say that daunting word. He does everything he is supposed to do- he goes to therapy with us, he's totally on board with a GF diet, he uses his sweetest voice to coax him down of of the window sill saying "ah, ah, ahhhh..."

I have no family where I live and no one to take my daughter for a couple of hours so we can go to therapy together when my husband is at work. She goes everywhere with us and my son doesn't want her around. He yells "Nooooo, noooo" and pushes her away. She makes a sound and he screams as load as he can. He really is a very sweet boy, but his meltdowns make my ears ring and make my eyes blind.

I'm so proud of him for being so strong and having to go through this world with all of his struggles. He does quite well. "The magician" wrote that he is "mild to moderate" and my son is learning very quickly, when he is interested. I never imagined that I would have to work so hard to have my child interested in me. We have wonderful moments, but most of the day I am chasing him around with my sweet baby girl in my arms trying to entice him to play with me.

He is very physical and loves physical activities. They are a great way of connecting with him, but I just can't do it all day long. My body aches, my brain aches and I am so tired and scared. Somehow, I can still find strength to keep doing it all day after day, but some days I yell and scream and squeeze his hand too hard and I feel like an absolutely horrible parent. I don't get to parent the way that I always thought that I would and it is hard to surrender to the fact that this is my life. It is so dreadfully hard sometimes, but so beautifully real and whole other times. Sometimes I think I forget that he is my precious baby boy and not my enemy. Autism is the enemy or what I am trying to realize is that autism is just a way of life.


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a couple of hours so my son and I can go to therapy together when my husband is at work.
by on Feb. 15, 2013 at 8:28 PM
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Replies (1-10):
ThreeSweetPs
by on Feb. 15, 2013 at 8:51 PM
1 mom liked this
I can relate. Keep the faith. Let your hubby hear it from the professional if that's what he needs. Good luck with everything.
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takeitall13
by Bronze Member on Feb. 15, 2013 at 10:05 PM

 this.  dh FINALLY understands and sees it without the dr but I know he does want to see it basically in writing too..  We haven't had the final diagnosis either but in my heart I'm almost positive that he is mildly autistic--  even the therapists he saw for OT/PT seem to think so too saying they've seen most of his behaviors with other kids and were pretty sure but that they didn't want me to stick to that that the psych had to see him also.  I hope you are doing good, stay strong and remember to take mama-time outs if you need them :)  ::hugs::  You have a great support group now.

Quoting ThreeSweetPs:

I can relate. Keep the faith. Let your hubby hear it from the professional if that's what he needs. Good luck with everything.

 

blessedhappymom
by on Feb. 16, 2013 at 12:53 AM
1 mom liked this
I was in denial for a long time. I couldn't even say autism. Anyone who even squinted an eye at my son was an enemy to me. Finally, in retrospect, i can see that my sons primary doctor took a sideways approach. He told me he saw some 'delays' which he thought could be helped with speech and occupational therapy, which I agreed with. Once in therapy, I began to slowly come around. He doesn't have an official dx, we see the developmental 'magician' in March :).
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darbyakeep45
by Darby on Feb. 16, 2013 at 5:15 AM
Hugs mama! It took my hubby a long time to adjust as well:)
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TheJerseyGirl
by Michele on Feb. 16, 2013 at 5:58 AM
4 moms liked this

 What I love about this group is that everyone of us is a mother of an autistic child and we completely understand how each of us feels. Your words are also our words. We've all been there or are just coming into this world of autism...We have so much to offer each other.

Welcome to the group!

 

HippoCat
by Hadley on Feb. 16, 2013 at 10:57 AM
1 mom liked this
Thank you ladies. It is nice to go to a place that doesn't feel so lonely anymore.
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Dora-rulz
by on Feb. 16, 2013 at 11:22 AM
1 mom liked this
Stay strong & let dh hear it from dr. Maybe that will help him accept it. My dh is still in denial & tries to treat dd like a NT child. Leaving him w/ the kids for week so hopefully he will "get it" by the time I come home.
I know how you feel. I have 2 kids & there are so many things I would've loved to do but couldn't cause it would've caused meltdowns w/ dd. Trust that it gets easier w/ time.
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MomOfOneCoolKid
by Gold Member on Feb. 16, 2013 at 12:15 PM

I hear you. I have known unofficially since about 1 1/2 yrs ago and officially 1 yr ago and i still go through some of the same emotions.

 

If you have time, check this PDF out. http://nichcy.org/wp-content/uploads/docs/nd20.pdf

 

Macphee
by Silver Member on Feb. 16, 2013 at 1:58 PM
1 mom liked this

I love that you are embracing this diagnosis. Not to mention that you knew all along.

I know how you feel. My son used to be completely emotionless and unaffectionate. I had to work so hard for him to want to engage with me and his brother. He also is very physical. I literally had to lift weights to get my strength up. Honestly, buy a pilates ball for $7. Let him bounce on it. If you have a playground near you, take him once a week. My son loves to wrestle and climb all over me. So now, he only gets to a few times a week for one hour. We also roll balls or bounce them outside.

I relate to how you feel about your baby girl. My younger son also is so engaging and affectionate and he asked me why I bother with his big brother. Mommy, I like you. You don't have to try hard with me. I seriously almost broke down into tears. I had to have the talk with him about autism. And he already knew his brother was different. He told me, mommy I wish that it was easier for brother. But don't worry, I'll help him get better.

Autism is not the enemy. You have to simply understand the world through those lenses. It's like someone who needs glasses. They see the world blurry or differently, so they are good at different things. That's why you need therapies, they are like corrective lenses.

Honestly, my older son's diagnosis makes me appreciate both my boys better. Its crazy how easily parents take their kids for granted. But honestly, my son who was diagnosed at 3 is now 6. His development and personality now is oceans away from his starting point. So its not about defeating autism or "curing" your kid, its about coping with how your child was born.

I still deal with the whining and screaming. Its like a cheese grater on my brain and nerves. His sensory issues with touch. The bad news is that fathers want their son's to be perfect. The good news is that when they realize how much progress can be made, they become the primary champions.

HippoCat
by Hadley on Feb. 17, 2013 at 12:54 AM
Thank you so much for your response Macfee. It was really helpful for me to hear your story. I have thought about it many times throughout the day and it gives me hope for a lot of reasons.

I like how you speak of autism as seeing through different lenses and that the therapies are like corrective lenses. We have been doing floor time with an amazing OT and you can tell how helpful it is for all of us. My husband is able to go every other week and it is nice to have him learning from a professional rather than me telling him what someone said.

A big problem that I have with my son, Xander, is that he's not really interested in anything other than climbing, jumping and slamming doors. I have tried to make games out of his behaviors, but I don't really want to play them all day long. (I'll have to try the pilates ball.)He is in a very destructive phase right now if he doesn't get what he wants and I feel like we are all controlled by him. I don't really know how to discipline him and I know I am not doing a very good job of it. Then all of a sudden I loose it and start screaming at him and that doesn't do anybody any good.

How did you get your son to start to be interested in what you were doing? I grew up with such a good friend in my sister and it is so painful to see him almost traumatized by his sister half of the time. It's nice to hear that your little one is on board with helping your older son too. Have they started to have a nice connection?

I'm really working on acceptance, but boy is it hard! I think I knew about it, but denied it for about a year. I know I have a lot to learn from him and know that he deserves all of my respect, but it is just so hard right now. I know I'll get there, but whew... It's rough going right now!
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