Hi there. I'm Heidi, mama to Luken (3). From infancy, I knew that he was different than most other children I've been around. He had "blank spells" and "seizure like episodes". He'd repeat behaviors such as rocking or flapping. He didn't crawl and was slow to walk (18 months). He's always been VERY verbal and is far ahead of most kids his age there. He had early cardiac concerns but those resolved without surgery before his first birthday. His motor skills are there but he doesn't seem to have control over them - as in, he can do things, it's just uncontrolled. He runs into things. He has no self-regulatory skills whatsoever. Ever since he was an infant, his doc commented on his extreme activity level. We've had sleep issues with him since birth. As he got older, I took him to my sister's so she could babysit so I could have a break. She too commented that he was completely out of control. In an hour, he could totally destroy her house, even with her there chasing and trying to keep up with him. It's as if he'd get into a state where it was near impossible to get through to him, let alone contain him. He still does that. He's been dx'd with significant sensory processing issues and we do OT twice a week, PT once a week and see a child psychologist once a week. His anxiety leven is very high and he is very easily overwhelmed by "normal" sorts of stimuli. He struggles with agression at his playschool.
I've been working since August to get him evaluated and see if he meets the qualifications for having an IEP. The person I'm supposed to be working with on this is quite avoidant. I call her at least once a week and she never calls back. It's SO frustrating!
I'm new to the world of services for young children. I feel like the people who are supposed to be helping me just don't care. I live in a rural school district and they contract with a company to provide "special ed" services and therapies. Our insurance runs out at the end of the year and I want to have his services switched over to the school district by they.
I feel quite overwhelmed by all of this. Any encouragement or advice would be greatly appreciated.
First of all welcome to the board. Not the board we all dream to be on, but the ladies here are AWESOME!!! I'm so sorry you are having so many issues. Is there any way to go over the person's head whom you are suppose to be working with? It's doesn't seem like the ideal way to have a "relationship" with someone who is suppose to be helping you, but it might be necessary. Other than the sensory diagnosis does he have any others or are you working on one? Some of his behaviors seem autisitic in nature (although there other things out there that mimic that behavior) ie the flapping, rocking, the agressive behavior (social issue), sensory issues. And while the school district is a great resource sometimes it is necessary to get help outside of the school district (meaning private) while you can. Ours runs out at 7 yo, so my hope is to continue Eli for the next year and a half as long as we can pay for what the insurance doesn't.
And just to introduce myself, I'm Angela. I have to special needs kiddos. Dakota who is mildly autistic and Eli who was born with congenital heart defects, subclavian steal syndrome, neurological issues and some other areas of concern. Eli is who I talk about the most since he is classified as "medically fragile". Definitely don't be a stranger.
Progress! The Child Study Team meeting is scheduled for Dec. 6th. Woot!
Luken's psychologist did neuro-psych testing with him today. He was such a trooper! I really like this doc. She is pushing to have him enrolled in the Special Needs Preschool. It's nice to have some support.
Luken had such a good week last week. I am so proud of him. He has sat for some meals without screaming or throwing food! He has been following instructions more than ever. I see little ways in which he's making progress.
for progress. That is AWESOME!!! Sitting for meals!?! That is so cool beyond words. Dakota would NEVER sit down for meals either at one time. He got us screaming and running as if the food was going to kill him. It wasn't until the therapist saw him when we went for group therapy (several other kids sitting around a table playing with the food and putting it in there mouths) they realized something was NOT right and realized he needed one on one therapy. Prayers going out for your December 6th appt.
Hi! Nice to meet you. I'm glad they are finally moving on this. I know it's frustrating trying to get services going, but once you get the momentum going, it seems like everything gets a little easier. Once you get a diagnosis, maybe you can get him on state medical insurance that will cover everything he needs. I know it's daunting, but it sounds like you're doing a great job advocating for his needs! We are here to support you.
Deb ................. DH Norm
DS Caleb, 13 ...... DS Patrick, 12
DS Isaiah, 8 ......... DS Thomas, 7
DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
William, 14 weeks, 4/11/12