No one will ever care about your kids like you will. When Dani and Sebastian were born, they were automatically put enrolled in the Westside Regional Center program. This program evaluates kids with special circumstances and follows their progress. They are government funded and help pay for special services. Since our state is broke, they have cut many services which is a pity for my children. My sisters kids who spent 10 days in the NICU all had physical and speech therapy completely paid for. My kids were born at a time when the economy is a mess, and now I have to fight for everything for my kids, especially Sebastian.
Sebastian has low muscle tone, which means he has difficulty with many gross and fine motor skills. His cognitive skills were delayed due to his motor skills being delayed. Thankfully now that he's catching up physically all the cognitive skills are taking off. He needed Physical, Occupational and Infant Stimulation Therapy, no question about it. It was also recommended to us by Dr. Kotton a specialist at Cedar's Sinai as well as Dr Kline that Sebastian go to an early intervention center with a clinical setting. They have a great program at UCLA which consists of a staff of Occupational and Physical therapists. Every child is unique and has their own special circumstances when it comes to development. And then they also have peer models that attend the program so that the kids that are behind are able to learn from their peers. The ideal situation would be to have both of my kids in this program. My biggest concern for Sebastian is getting hurt. Whenever there are stronger/bigger kids around him, it is a dangerous situation. Kids are agressive. They like to climb and aren't aware of space. He gets knocked around a lot and with his low muscle tone, he falls often. This program would allow him to be with many other kids, but have tons of adult supervision and support to provide a safe environment which would allow him to transition into a normal preschool. And Daniela would benefit by just being there, learning and interacting with other kids. She already does benefit from Sebastian's Infant Stimulation Therapist. I also want them to be with each other as well as be around other people with various differences so they always learn to respect all kinds of people no matter what their disability or circumstance is.
Despite dr recommendations, We got denied funding for this program. Erin Fox, the lawyer that represents WSRC said, "We just can't find justification for Sebastian to go to this program." I was livid! "You can't find justification? You have a whole report from the early childhood development evaluation therapist from Cedar's Sinai. Have you read it? Can I get a lawyer to help me argue this?" I responded. "I have a ton of justification."
1. A top specialist and our pediatrician recommended it
She explained that doctors recommend that all children go to these programs so they need more justification.
2. My son has a diagnosed rare growth condition called RSS, which means that while his peers are typically 25lbs, he is only 18lbs.
She said, "I don't deny that your son has serious medical issues."
3. My son has hypertonia which means he has weak muscle tone and can't go to regular children's gyms without being put in a dangerous situation
She listened.
4. Cognitive development is directly linked to physical development and he got a late start in comparison to his peers.
She listened.
5. He needs physical therapy and occupational therapy. A clinic based program is recommend and there are NONE near my house.
She listened and said, "This could be the stance that you take that gets this turned. It is recommended that he goes to a clinic and if there isn't a clinic near your home..."
I went on and on. I told her that I felt that they had budgets that they had to meet and that my son was getting pushed out of the system. She told me that because his verbal skills were ok, he wasn't eligible. I was stunned. I asked her if she had ever been to the UCLA Early Intervention program. I explained that when I toured it, they explained to me that they focus on all development, fine & gross motor as well as cognitive. What about the rest of him. What about giving him a good foundation so when he does go to school, he has the same head start as everyone else? I fought hard for Erin to get WSRC to change their stance. She called me back that day and told me she thinks she can get him in.
Moral of the story. Fight for the ones you love. You have to advocate for your family. No one will ever care like you will. Now, we need to work on getting Dani in. I'll have to pay for her, but it's worth it. It's now just a matter of space.
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