Special Needs

Can anyone relate?

I posted before about one of my twins possibly having autism. Her pedi agree she needs to be evaluated, we can't get in until June. We do have Early Intervention that is evaluating her Friday. I know they can't officially diagnosis her but she can at least get started on some therapies until her appointment at the Autism Center. I feel like she has sensory disorder as well. Does anyone have a child who has Autism and/or Sensory disorder? I feel like Lake is miserable 90 percent of the day. This cannot be "normal" I don't know what to do. I feel so bad for her and for her twin, who loves to be social and go out and do stuff but taking Lake out is just not worth it. We can't even go play in the back yard, she last 15 min at most, and during those 15 min there are numerous meltdowns. We can't go to the library, park, on walks, etc.. If she is not rocking in her chair and watching mickey mouse she is just miserable. Changing her clothes, putting her coat on it all turns into a meltdown. She has a lot of red flags for Autism and now this. I feel like this is getting worse and worse. She used to be a happy baby. I don' think she can help acting this way so I try not to get frustrated with her but it's hard sometimes. I just want my happy baby back!

Re: Can anyone relate?

  • Yes, I can relate. I don't have twins but my two boys are 18 months apart and developmentally are closer together than that. DS1 has autism and SPD. The 2 disorders go together a lot. Around age 1 is when the difficulties started. That was "just" with feeding, though. Around 18 months is when things got more difficult all around. I never take both of my kids anywhere by myself except my parents' house. DS1 goes to the grocery store with DH most weeks, though lately he hasn't been as interested in going. We don't go many other places. We had a very rough patch during which he was obsessed with opening/closing doors and turning lights on and off. It was awful. We also used ECI to bridge a gap until other services could be started. Just be prepared it may take a few weeks for your regular appointments with them to get rolling. Our ECI eval was July 26 and appointments started in early September. Our medical eval was August 22 and he started in ABA full-time the following January. I took 2 weeks to research and get the paperwork delivered and then it took 4.5 months for them to get his spot. We had Christmas in there, too, so that probably added to the delay.

    ABA has saved our lives. I'm certain that is the ONLY way to get DS1 eating. It has helped immensely with other behavior, too. You might want to start researching it for your child while you wait for your appointment. Our ECI was able to provide a little bit of behavioral services through an individual who had just left the facility where DS1 receives ABA now. We got a little taste of it before he started full-time ABA at almost 3 years old. Anyway, my boys still don't play together very much, but DS1 plays so much better now on his own and with his parents. Tantrums are much less common. I can actually see him controlling himself better when he does get upset. It's really great. When he does flip about something, I think, man, what did we do when this was happening ALL THE TIME? I've been there. 

    I think in your other post you said the twins are 17 months. You are getting an early start and that is great. It WILL get better as long as you keep seeking out help like you are now. 

  • If I can make a suggestion, here - if you are not able to get an evaluation until June it means services would probably not begin until July and you may want to get a headstart on your own.  I highly, highly recommend you check out this link and order the book at the bottom where it says how can parents be trained in the technique.  Well actually, order from Amazon for a better price!

    Early Start Denver Model is pretty heavily endorsed by Autism Speaks, as you can see from the link.  (I have written about this here before, and NO, I am not associated with ESDM in any way, I just want to help!)  The book is a parent and caregiver-focused follow-up/companion to the ESDM therapy technique.  I am halfway through the book and I like it a lot.  It is a naturalistic method that focuses on play and regular daily tasks so it never feels like you are "giving therapy" to your LO.  You are just playing with your LO in ways that will foster social interaction.  It is something you can make the norm around your house and use to supplement whatever therapies your LO eventually gets, this summer.  

    Check it out!
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  • Hugs @gkay119 ! I hope that it gets better for your little girl very soon!
  • Get an ot eval. Spd every autistic child has but not every spd kid has autism. Mine has been dianosed spd at 3.5 shes now 7.5 it helped us help her in so many ways.
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