• Understanding Autism from the Inside

    “Academics came easily to me. The rest of life—not so much.”
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The Tot Needs Help!

TommyDespite all the therapy he is receiving in school, speech and ten hours of ABA therapy a week, the Tot seems to be regressing in some areas.

My biggest concerns are his emotional regulation; anxiety, clinginess, irritability,increasingly violent and frequent meltdowns; frequent attacks on his brothers (particularly my-ten-year old); and  bolting and his attempts at elopement.

I mistakenly thought that with age many of these things would improve (like it did with my two older ASD children), but instead his difficulty is increasing.

The many faces of a meltdown; of autism, for that matter: each child is so different.

When  Aspie Teen (dx now moderate autism) was a baby, he screamed and cried constantly and was impossible to sooth. Many years of ear infections, asthma, and stomach issues followed. His speech regressed, and he was difficult to handle in public sometimes (running from me at the beach). He was a very picky eater, and had tactile sensitivities (particularly when it came to clothing). Oh yes, and hated riding in the car! He cried, and always got car sick, but meltdowns were not that big of a problem. The Teen doesn’t melt down; he shuts down.

The little man, now ten-years-old, (dx Asperger’s) was my little Houdini. He was the escape artist. Elopement was a huge problem because he defeated most locking mechanisms and took off running down the road, but not before striping naked. He was a runner, and often bolted with no warning. Hubby and I had to sleep in shifts because the little man NEVER slept!  He was the meltdown kid.  We actually nicknamed him Meltdown Matt (just between me and hubby that is) long before we had any idea he has Asperger’s.

The meltdowns revolved around lack of sleep, lack of food, which we thought related to blood sugar, and interruption of a perceived routine or plan. Nothing out of the ordinary; I always said that he was the most like me!
Recently his depression and anxiety have been exacerbated,  with the audition of angry but not abusive (verbal) outbursts in response to stress. (Much of this I attribute to the situation at home with the Tot, who is constant hands-on. ) However, when he has a meltdown it is  emotional and tear filled, never violent.

Tantrum Tot (dx PDD-NOS) , on the other hand, has earned that nickname. The Tot is the only one I have ever worried about hurting himself. He is the only one who has these horrid meltdowns several times per day, which is affecting all the boys. We NEED to get him help; WE need help!

Tot with sunglasses

What I’m doing now: Fundraising for His Service Dog

Many of you have seen and shared (thank you) our fundraising campaign to get Tommy an autism service dog to help with his emotions, meltdowns, and safety issues. We believe securing an assistance animal will really help the Tot. However, it is going to take a long time to raise the funds. The online effort is only our first step, in what is promised to be a long journey.


Please share the link to Tommy’s Fund Raising Page: http://www.gofundme.com/ForTommysAutismServiceDog


Any idea what else I can do?

Do you all have any fundraising experience you can share? Ideas? suggestions? (Both online and off)

Help me brainstorm! I feel powerless to help my little guy, and need to feel like I am doing something. That’s why I research; that’s why I write; that’s why I’m fundraising. It’s something that I can do, something I can control.

In the meantime…

I will try to take it one day at a time, continue to write, and drain the swamp that my mind had become.

I know that there are many of you that have been where I am, or ARE where I am. Please share what worked for your children and your families. In the midst of despair, we need to know we are not traveling along a dark road alone.

Jeannie Davide-Rivera

Jeannie is an award-winning author, the Answers.com Autism Category Expert, contributes to Autism Parenting Magazine, and the Thinking Person's Guide to Autism. She lives in New York with her husband and four sons, on the autism spectrum.