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How to keep motivated to help with my autistic toddler's development?
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PriscilaG posted:
Hello, everyone!

I have a 22 month-old son that is not yet diagnosed with autism. But I do believe he is in the spectrum. He has had some motor developmental delays that became less obvious with OT, but he still has a great communication delay (both expressive and receptive). He was just evaluated by a Psychologist, Social Worker, Speech Therapist and a Doctor in an children's hospital and they said they could not diagnose him yet,but that he definetely needs speech therapy.

He makes great eye contact most of the times and understand simple commands, but he's is a little too obsessed with spinning toys and does some repetitive actions like opening and closing door or rolling bottles or any small object he finds (usually for about 1-3 minutes, rarely more than that). He does not understand complex comands, doesn't point and only now is learning how to wave bye bye, but he doesn't seem to actually know what it means. He also does not try to speak, and he makes only a few sounds like da da, ba ba, ca ca, ma ma, besides doing a "humming" sound.

So, the thing is... I am devastated! We talk to him a lot, read to him, try to show him pictures to see if he'll identify objects, but he just can't understand what we say so he starts crying and crying and does not want to play. When I try to get him to scribble with his crayons, he wants all of them at the same time and he won't scribble, he'll only want to roll them around with no purpose and when I try to take it away from him he throws tantrums. I just feel like dying sometimes, I have no idea about what to do to motivate him. Sometimes I feel like I'm being too pushy with him, but other times I don't know how firm I should be. If I let him do what he wants he will mostly want to roll things around, push buttons in toys or open and close doors.

How do you do in these situations? Any suggestions would be appreciated!
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ChasesMommy08 responded:
Hello,

I just had to reply to your post because I so relate to nearly everything you described! I have a son who will be 3 in September who was just diagnosed with Autism this past January. We too, were devastated but like you, we did suspect it for some time. Our son also loves to open and close doors; he does not spin or roll objects but he does rock in place A LOT. However, he is easily distracted by these "stimming" behaviors and tends to do them only when bored or not otherwise engaged. Our son too, has significant communication delays like you described and tends not to initiate social interactions with his peers unless encouraged to do so. The only advice I really have is to get your son in Early Intervention if you haven't already and get him evaluated for Autism so you can have the 'offical diagnosis'. This diagnosis will open doors for him as far as additional therapy and education resources. You are not being 'pushy'; children like ours need the stimulation and motivation or they will not make much progress, but at the same time I believe that you can't let Autism hover over your whole lives. You must learn to just enjoy your child for who he is and try not to be consumed with worry and guilt - very difficult, I know!! Hang in there and keep doing what you're doing for him plus the other 2 things I suggested. Progress may be VERY slow but you'll see it. We celebrate and treasure every little accomplishment our son makes no matter how small. Hang in there....
 
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PriscilaG replied to ChasesMommy08's response:
Thank you for your reply chesesMommy08! Having words of support is very helpful and encouraging!

Our situation seem really similar. Does your son talk? Do you have any history of autism in your family or had any factor that could have caused it during pregnancy? I am having a real tough time accepting all this. I had a great and healthy pregnancy and we have no history of autism in the family. The only thing that happened is that, in the last weeks of my pregnancy, my baby started losing weight in the womb due some placental insufficiency, so I had to be induced and he was born small for gestational age (SGA) at 37 weeks. But after that he gained weight fast and have never had any health problems at all, he barely catches any cold. So, the only thing I can think of is that he could have had an oxygen deprivation to his brain that caused the problem.

My son is having Early Intervention since 13 months, and it has helped especially with the fine and gross motor skills, but it was mostly because I worked REALLY hard with him. The therapy was only once a week for 45 min or once every other week.

I wish I could do more right now, but he can't have a diagnose yet. according to the specialists from the children's hospital we had him evaluated last week. They say he needs to have speech therapy first and that they want to see him in one year (about the same time your son was diagnose), so they would probably be able to either "discharge" him or make a clear diagnosis. Since he does not have most of the signs of classic autism, they say it can still be only a speech delay. Oh, and he can scribble, but will do it only for a few seconds before he starts rolling the crayons around. But he also doesn't initiate interaction with kids very much, and when he does, it is very brief, mostly a smile or an attempt to touch the child's arm or something like that.

What did the specialists say about your son? Is it a kind of mild autism?
 
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annette0844 replied to PriscilaG's response:
Dear Priscila,
Please, Please, Please, if you do nothing else keep pushing to have your child diagnosed even if you have to do it privately. He can be diagnosed early and you have the greatest chance of recovery by getting aggressive intervention early. We went through my daughter-in-laws private insurance and had a diagnosis within 2 weeks (there were multiple assessments; hearing, occupational and physical therapy, psychological) Armed with this diagnosis we were able to go to the county agency and get services. We also hired an advocate to intervene for us. It cost us $500 but my grandchildren received twice the hours usually given out by the county and helped us understand what services would be best for them, not just what they wanted to give. We were able to add speech services, as well as occupational therapy. 45 minutes once a week is not enough.
The sooner and more intensive the therapy the better the outcome. Also, please watch and observe what the therapists are doing and carry over when they are not there so that every interaction with your son can be a learning one. Make no mistake this is not easy and you will want to quit and just relax, but the more you work with him, the faster he will improve.
One thing I would suggest is to make a video diary at least weekly. Improvements are often subtle and take time, having a video to look back on may let you see the progress more easily.
Grandma A
 
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mickey2tch replied to PriscilaG's response:
Priscila, My son was just diagnosed with mild autism. We were told we had to wait until he was 3 before he could have a true diagnosis. So maybe that's why they r posponing any diagnosis with your son. It is so very hard to accept. I've cried a lot at night trying to figure out why. I have been told though the more intrvention time he can get the better off he will be. My son will be attending a school this year with typical children and delayed so he can benefit from both worlds.


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