Man. Legislative Breakfast 2013
My son, Morgan, is four years old. He is this incredible ball of energy. He is super-social with adults. He’s playful and inquisitive. He is extremely curious about how things work and he loves to take things apart. Some of the things he says are completely astonishing, and they leave you wondering how he could know this. He loves reading. It doesn’t matter how many times you read a book: if you skip one word, he’ll turn the pages back. He’s amazing.
When he was about 15 months old, his language disappeared, and he began to decompensate and regress. It was incredibly difficult to go from having a child who repeated everything that was said in both English and Spanish to a child who said nothing. I spent almost 9 months not hearing the word “Mama.” It was as if my son had died and had been replaced by this other child who I had to keep safe but didn’t know anything about. He no longer made eye contact, he would hide in the corner of the crib and bang his head on two sides. He would rock back and forth and wave his hands. He would be mesmerized for hours and hours by anything that was swinging. He would shift his weight from one foot to the other while standing completely still. He forgot how to chew and would swallow foods whole, and we had to go back to pureed food. When he felt overstimulated he would put his little hands to his ears and close his eyes; in about 10 seconds, he’d fall asleep.
I was extremely sad. And lonely. I felt that I was the only person on the planet that was going through this. I did my research, read every book imaginable. I needed to learn how to help him. I took him to his pediatrician who at first said there was nothing wrong with him—that I was a new parent and I had some anxiety because I was going back to work and leaving him in daycare. But after seeing him in action a few times,the pediatrician agreed there was something wrong, and she referred us to Early Intervention (EI).
Initially, Morgan was diagnosed with pervasive developmental disorder, which meant he had significant delays in all areas of development—delays of between 9 and 11 months. I didn’t have postpartum depression when Morgan was born but I had it when he was diagnosed. I had had this incredible little boy for 14 months and then he was taken away from me. I came to the realization that my son was going to be differently abled forever. He has now been diagnosed with autism.
EI gave Morgan speech therapy, occupational therapy, physical therapy, and Applied Behavior Analysis (ABA) instruction. EI taught me teaching techniques and exercises to do with Morgan. They gave me excellent resources. I loved that they gave me homework. I began to feel more confident. Because of EI, Morgan was able to talk again, and to me that was the most incredible thing. He was able to tolerate some things he couldn’t tolerate before. He was able to eat food! I thought, oh wow, he’s a regular kid again. They worked with him for almost 2 ½ yrs. I felt like thank you, you gave me my son back. I can enjoy him again. EI opened doors for him that I thought were shut forever.
Governor Cuomo’s EI proposals would cause EI providers to lose so much money that many more would go out of business. This would be an incredible disservice to these youngsters who truly need these services and benefit from them. It would be heart-breaking if their developmental issues were not addressed at the early intervention age, when it can make so much difference.
When Morgan aged out of EI, he was significantly better, but he still had issues. He wasn’t connecting socially at all; he didn’t know other kids were in the room. It was very difficult to understand his speech, and he would cry hysterically and have tantrums and self-injurious behaviors because he was upset that people did not understand the words that were coming out of his mouth. He was still falling and bumping into walls. So he was placed in special education preschool, where he still is. In preschool he continues to receive speech, physical, and occupational therapies.
After a year in preschool, I’m seeing gains.His speech is now 75% better and people can understand him. He can go up to a kid and say hi. He doesn’t need physical therapy anymore, although he still needs occupational therapy to improve his fine motor skills.
The Governor is proposing to bid out preschool services to get the lowest price. This really shouldn’t be. It’s not a cleaning company. You’re not coming in and shampooing the rugs. The purpose is to provide the best services for the child. You can’t do this cookie cutter thing for the lowest rate because different children need different services. With the lowest rate, preschools won’t be able to offer the full extent of services that children need. Preschools might have to increase the therapists’ caseloads so that the therapists will have to cut back the time spent with each child. This proposal would lower the quality of services and deprive children of services they need. It should be rejected.
We owe it to this generation and the generations to come to ensure that EI and preschool services continue to exist.
Thank you.
Man. Legislative Breakfast 2013