You may have to push

One thing I continually remind myself along this journey is that I am dealing with people. Some people are extremely committed and efficient at their job and others are just doing the bare minimum. Some have a superior skillset while their counterparts may be new to the profession and green. We are rarely given that detail. While their credentials ar intact, we don’t know if we are getting the A student or the one who just barely scraped by to meet their qualifications. It’s like the Dentist. Do we really know? People are also prone to moods and prejudices all of which affect decisions and outcome. That behavior spills over into their work. I said all that to say you are going to have to be the expert on your child. You may not know all of the proper terminology or the exact diagnosis, but you have experience and you are there day to day and know the behaviors you child exhibits, what they struggling with. There are services available in many states (NY is phenomenal) that are free to you. You will still have to fight in many cases to get those free services. Sadly, you may have to face delays, opposition and …people.

My neighbor ‘s ABA Therapist suggested to her that I get my son tested.  She was treating her son at daycare and during play therapy she noticed that my son had many behaviors consistent developmental delays.  Why had she cared about my son enough to ask her client if she knew this child’s mother. She cared enough to recommend I take action immediately because he needed early intervention services too. Isaiah was 18 months at the time.  Now was the time that therapy would set him up for future success and catch him up. These moments were precious. My son was still in foster care and under the guardianship of the state.  The agency suggested that we wait until he was five years old to guarantee more concise diagnosis. Ummm. No! They conceded and gave the approval for testing.  The initial diagnosis was Global Developmental Delay and Regulatory Sensory Processing Disorder.  What a mouthful.  They approved ABA Therapy for ten hours a week and OT for an hour and a half. I didn’t understand it all at the time but I knew my son needed help too and waiting would have served no one.  Had I accepted their initial response he would have missed out on a year and a half of personal, one on one instruction that was free and no cost to them. What good reason would they have to withhold the services? I still haven’t figured that one out.

When he aged out of Early Intervention it was time for a new evaluation through the Department of Education. He was evaluated at daycare while I was at work. I called the therapist prior to her meeting with my son and explained my concerns. I told her he was going to be on his best behavior because she was new and would have toys to play with. She assured me that she would still be able to assess him. She called me afterwards and assured me that she got what she needed and that a report would follow prior to my meeting with the Dept of Education. When I got the report back I was able to share it with someone at Early Intervention prior to my meeting with the DOE. I have visited them and requested an extension to the OT since they had not met their time requirement due to a shortage of OT staff. She read the report and said that it contained a whole lot of nothing and based on what was in the report he would get regular school and not be able to continue with his therapies. That is when she schooled me. She told me that NY State has private schools for children with all types of special needs but that I might have to get a lawyer to sue them in order to get my child enrolled. Whattttt?!?!?! Ain’t nobody got time for that! I still had to attend the meeting with the DOE.

The meeting happened to be on the first hot Friday after a long cold winter. It was at 2:00pm in the afternoon and I’m sure they wanted to get out early to enjoy a sunny Friday afternoon. I knew something was up when they called at 12:00 asking me if I was going to keep my appointment. Yeah… This is important. I arrived at 2:00pm as scheduled and after waiting about 15 minutes for a couple of staff to show up and a for them to scan the additional documents I brought with me the woman in charge of the meeting swiftly concluded it with the quickness. Yes, concluded. She told me in all of three sentences that he would be going to public school and no further services would be offered to him based on their recent evaluation. (Now the woman and Early Intervention already told me they were going to say exactly that). I balked at it. Her reply was look at these scores. He is the smartest kid we have had in here all day. I am sorry there is nothing I can do for you. Your son is a genius. We are not concerned with the same things as Early Intervention. The DOE is looking to see if your child can learn. If he can learn he can go to school. We will not approve further services because he doesn’t need them. Huhhhhhhh???? I planted my feet and plead my sons’ case. I told her point blank that I was not leaving there until they did something for my child. I asked did she even read his entire file. I explained my concerns in depth. She stared back at me with folded arms and would not give in. I told her what was going to happen if she put my son in a regular class with 28 kids. He would be labelled as the bad kid, get marginalized and separated and I would be getting excessive phone calls for this problem or the next. I told her I would rather not waste a year, frustrate my son and myself, the teacher and other students when this is something that can be addressed now. There were two other therapists in the room, and they started interjecting to offer solutions, but she also shot them down. After twenty-five minutes of back and forth she finally caved in and agreed to send an Occupational Therapist to reevaluate him and do a sensory profile. OK, now we’re talking.

The appointment kept getting cancelled for one reason or another. I finally a received a call from a woman who going to see us as a favor for a friend. I was like “great!” (sarcastic). Who was this person? As it turns out, she was the perfect person to evaluate my son. She was a College Professor who chose this profession over her father’s wishes for her to become a Medical Doctor. Her reason, because “These people need me.” Whatttttttt?!?!?!?! I see you God! Commitment, dedication, passion. Who could ask for anything more? From the minute she began her session with Isaiah she kept saying “Mom, do you see that?” I was like no, what? She said do not worry I will explain it to you at the end. She had him perform a series of simple tests and kept asking me the same question. At the end of our session she explained to me how his brain worked and how it was injured, that he may see some improvement as his brain continues to heal. Turns out that he is six months delayed with hand skills and 22 months delayed with visual motor skills, not to mention all the sensory issues he has.

The Professor wrote the report of life! When I received my copy in the mail I was blown away. I was like “How they miss all this?” The validation was real! Before I could even reach out to the DOE they called me and told me that they had found the perfect school for him and had already enrolled him. There was nothing for me to do but come in and sign a document then go to the school for a walk through. The way she handled it was vindication. I wasn’t making any of it up and shame on her for making me beg and plead for services that are right there for our children. The quickness at which it was corrected was almost apologetic. I agreed with her on one thing. My son is a genius. Smart is not his problem, but he is 22 months delayed in an area that is particularly important to a child just learning to write, differentiating shapes, use memory, holding a pencil, his mind and his hands don’t work together…there’s just so much.

I wanted to thank the Professor for being awesome at her profession. She didn’t do me a favor, she did her job. Along the journey we will be fortunate if we find some like her but if you don’t, push Mama. It’s okay to push. Get heard, get results, make them see you. Make them listen to you. At the end of the day your advocacy for your child is what will make the difference. And don’t be afraid. The big bad wolf is only in fairy tales.

By the way, the school he was enrolled in knew exactly how to work with all of his issues. I was very happy with the placement. Isaiah grew in ways I could not imagine at the Little Red School.