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We Need An Intervention

I haven’t posted since, August. Life has been pretty busy. I was in school and have since, graduated. About 2 months before graduation, we took Zoë to her 3 yr wellness check up. Nothing has been the same, since. Buggy (Our nick name for her- short for “love bug” ) has been in occupational therapy and speech therapy -since. Her OT has been such a great help! We’re just starting to “break ground”. See, Buggy doesn’t respond quickly to new people. She has a difficult time focusing on faces, or understanding what people’s facial expressions, even mean… Topping things off, our ST- was pregnant- like “ready any day” – and she was out of the picture, for about 2 months. (We were not upset by this! Babies are awesome!) The facility is flooded with patients, so Buggy- went without ST. In some ways, this was a good thing. She gained a lot of confidence! She learned to trust her therapist. Amanda (Bug’s OT) – is an amazing young woman! She can handle Buggy’s tantrums. She takes the time to understand Buggy’s echolalia- she knows “the script”.  They have an amazing connection! And it’s done wonders for us, as a family. Less meltdowns, and a deeper understanding of Buggy’s motivations and fears. The speech therapist, has returned- and now we’re working 2 times a week, with both.

Today. Oh, today!  I live in Florida. A state, that isn’t actually world-renowned for taking care of the impoverished, homeless, mentally ill – or the disabled. My daughter receives Florida Kid Care. Everything seemed fine. I mean- I don’t have any health insurance, neither does my husband. We didn’t qualify. But- Buggy did! Great! It seemed like, she was going to get all the help she needed. Today. Oh, today! – I decided to grab the mail, in my pajamas- no less! Because, that’s what you do- when your 3yr old, has been sick with a fever and runny nose, all night. Man- I wish my husband wasn’t the “designated adult” for grocery shopping. Because, he would have grabbed the mail.. He would have read the two letters, from United Health, that refused our therapists requests- for 48 more weeks of OT and ST.

Yup. They said “NO!” – to the most important help, my little girl needs. I sobbed! I can’t lie about that, I can’t hide it. Hell!- I’m writing this, to vent!

Early intervention is key, for kids that have special needs. But- my state, our country- is denying this for our kids! In  N.E. Florida- we have ONE doctor! One man- that can give a proper diagnosis- to either, rule out -or secure an “autism” diagnosis. What people fail to understand- is that “autism” is actually, not just one thing. In fact, ASD is preferred, among  most parents waiting for an “official” diagnosis. Our kids are on the spectrum. Or- the waiting room. It seems to be counter-productive, to the truest goal. – Goal: Raising our ASD kids to be self-sufficient adults. All kids with special needs, deserve that! All kids deserve, to grow up and take care of themselves.

If it’s so necessary, to have early intervention- why cut it off for so many families?! If our kids are ever going to be able, to take care of themselves – why destroy that possibility? Why not allow the early interventions? Intervene positively. To me- this would make all of the difference, for kids that are under the age of 14. And also- save money- for the kids that are 14+.

Bottom line- these kids grow up. They “age out” of services. Most states “age out” at 22yrs old. – Imagine having a child you can’t take care of forever. Imagine knowing, you may never live long enough, to make sure they’re safe. Not- “Oh I hope Susie gets a good job.”  Not- “Oh , I hope Joey finds a nice girl and gets married.”   I go to bed every night thinking: “How can I live long enough, to take care of Zoë?” “What will happen to her, if we can’t help her talk and something happens?” “What will become of our daughter, if we can’t get her the services she needs?” .

We need an intervention. This government, our health system, our country.  For everyone. But especially, for our special kids.

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Zoë Is Different

I haven’t blogged in a long time. It isn’t because , there was nothing to say. I just, couldn’t say it. I’m not the kind of person that hides things. I’m so terrible at it. So,silence seemed the best way to deal with this.

In April, my beautiful little girl, had her 3 year wellness exam. Everything seemed fine. Except, the test. Not a blood test. The M-CHAT-R. Our lives have never been the same, since. She checked on 19- out of 20. We were devastated! HOW?! How, could our little girl, who counts to 23, knows all her colors and letters.. HOW IS THIS HAPPENING?!

Everything that -never made sense- suddenly made sense. But not really. Because, there’s no “sense” to this. Autism, or ASD or PDD-NOS or SPD. What’s going on here?! I can tell you this much.  A lot of tears.

Tears from a little girl, that can only be happy when she spins. A lot. A little girl, who used to love having her picture taken. Now- she just grabs the camera. A little girl, that can say SO MANY words…But, can’t talk to us. A little girl, that cries a lot – because we don’t understand.

It’s difficult as parents. I’m sure- it’s worse for her.

Zoë is different.

We love our Zoë.

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