Home. This is my home, my safe place. As many of you do, I come back here when I need one. And I very much need one now.So many shoes have dropped since the last time I was home.
Elim has autism. I knew it. In my heart I knew it, it was a relief when we got the diagnosis because now we had a name. Social communication disorder alone just didn't sit right with me, it didn't feel like it encompassed everything. So on top of occupational therapy we added social groups. And an IEP, his first IEP was beautiful. Then we moved to Kansas and it was ripped to shreds. And it was horrific for him there. His teacher daily told me about him talking too much, about constant social issues. Yet they wouldn't add his social skills classes back into his IEP, they refused. It seemed as if they blamed me for his social issues, they wanted me to discipline him for them. How can I discipline my child for the symptoms of his diagnosis? It was even more horrific at home. The little girl in his class two houses down told him "I wish we had moved away before you moved here", "I'm only nice to you in school so I don't get in trouble", "I'm glad I'm going on vacation so I don't have to deal with you", and raising her scooter as if she was going to hit him with it. These were in front of me, yes I spoke to her mother, and yes her parents told her that she wasn't allowed to play with my son. In a cul de sac where all the kids play together. She was so ugly to him, at seven years old, telling him to get off her grass. Thank goodness it was only for four months we were there before moving. We're in Hawaii now, and moved into our house. There's a pack of children out back, and thus far they're getting along. They're even still knocking on our door to ask Elim if he wants to play with them. A tear came to my eye when that happened, but I'm waiting for a shoe to be thrown at me and things to fall apart. I pray that they don't. He's finally in a good place now. We attempted medicine for his ADHD, but stopped. It took his entire personality away, even someone he knew looked at me and asked if he seemed down. I stopped the next day and haven't looked back. He's happy. Finally happy, he's my boy again, not the sullen kid anymore. I'm so glad to have him back.
Isla has been going to physical therapy for toe walking. No real shoe there, I walked as a kid and I'm fine so no biggie we'll get her in some braces and some physical therapy and go on with life. Then a shoe, we go to see a physiatrist. He mentions cerebral palsy, and hereditary spastic paraplegia, and tethered cord among others. Wants her to have an MRI. We try, hard as we might but can't get it in. Then another shoe, we move to Hawaii. The physical therapist says she thinks we need to get an occupational therapy consult because she sees some crossover problems that need worked on. Then another shoe. Last week she mentioned her right eye turns in. I think she's a loon, I have not once seen her eye turn inwards. I look from time to time this past week, and never noticed it. She again mentioned it yesterday, and I questioned the legitimacy of her claims and her practice. I just nodded and moved on, because it's the only practice I know of here for kids. Then today. I watched, and there it was. Her eye turns in. But not a lazy turn in. It's a as she follows a ball as it comes to her and she catches it and her left eye settles and stops moving but her right eye bounces inward and then settles to straight. It's something so small but it's hitting me like a ton of bricks. Something else is wrong with my baby, and I wasn't expecting it. It's always the things that catch you off guard that hurt you the most, right? And I wonder, just how big this shoe is going to be when we get a diagnosis?
Stacy, I wish that I could give you a huge tight hug right now. So, virtual ones first. HUGS!!! Deep breaths. As you might recall, we too are walking an autism/ADHD journey with our son T. I am glad that you were able to get the diagnosis for E and embraced it, so that you could get him more help and services. My heart hurts to know that a school was disciplining him for his diagnosis! I'm told that it's not that way everywhere in the world, but boy, ignorant people suck. Absolutely horrific and very unsettling that the former neighbors' kids were so awful too! My hubby and I are teachers and it was more than disappointing to realize that (our) public school and district were not going to do right by him. I still have horrible Kinder flashbacks and saw way too many hurtful things happening right in front of me. If it's happening here, you know that it's happening to so many kiddos everywhere. Staff is not trained (appropriately). It takes way more than a 30-minute PowerPoint on a PD day to learn and implement strategies correctly.
It's so hard to trust a professional's opinion. Believe me, I SO get that. I am very guarded and don't trust easy. I am glad that you were able to witness what the one therapist was mentioning as hard as it was. I am hoping that your little girl can get in to be seen sooner than later and I'm hoping the therapies will yield more results in time.
You've got a great fellow Share resource Mom there in Hawaii too if I recall. Hopefully you're running things by her and getting some advice there. If you ever need to vent or have questions, I'm here. I'm so glad to hear that you're in Hawaii now, but I know you're further away from family and that's probably an adjustment as well.
Thinking about you all,
SO many hugs right now! I am so sorry that you are dealing with all of this, but I'm glad that even in Hawaii you have Share to come home to, and its accessible anywhere! While you never want anything to be wrong with your child, it's probably good that someone caught it and it can be addressed. I won't pretend to have enough medical knowledge to know what it could be, but there is always the chance it can be corrected. I hope you can get the MRI as well, so that you have answers for their observations of Isla.
I'm glad that things are going well with Elim and the neighborhood kids. I think you were in a school that was simply ill equipped to deal with his needs, which also employed very self centered and rather ignorant administration and teachers. I hope that having his diagnosis aides the services he receives at school and that his new teachers and peers are more understanding. Please know we are always here, and I'm just a call or text away!
Love and Hugs
Big, big hugs! I have been getting clobbered by shoes for 17 years and it becomes exhausting. Truly exhausting. You will worry until you know for sure what is going on and then if there is a diagnosis you will mourn what you may lose as a result. But then you pick yourself up and keep moving forward. Like you always have. And Elim and Isla will keep moving forward to because they're amazing and resilient and because you and Charles will walk with them every step of the way.
I wish I had that crystal ball to tell you exactly where this is all going. I don't but I do have love and hugs and prayers I will be sending your way... all the way across the ocean.
Hang in there, Momma. And now that we're all here for you.
Hugs and love,
March of Dimes fights for the health of all moms and babies. We're advocating for policies to protect them. We're working to radically improve the health care they receive. We're pioneering research to find solutions. We're empowering families with the knowledge and tools to have healthier pregnancies. By uniting communities, we're building a brighter future for us all.
Privacy, Terms, and Notices
© Privacy, terms and notices