Let me just warn you now, this post is going to be long. 😉
Earlier this week, I wrote a post entitled What I Want People to Understand About Why Teachers Are Frustrated. That post seems to have struck a nerve. And, honestly, I’m glad. Because it should. It’s the kind of post that can actually enact change. And I’m proud of it.
In it I purposely made the details of our situation very simple so that it would be easy for people who do not have a background in education to understand. However, doing so has understandably raised a lot of questions. At first I wasn’t going to answer them. I was planning to keep the details of our story mostly private in order to protect our son. I didn’t want someone at school to read them and bully him, or for him to resent me for sharing them later in his life.
Last night we hired a babysitter and my husband took me out to dinner. We talked about my concerns. And my husband encouraged me to continue to share our son’s story because in our family we see my blog as our ministry. This is how we reach people. Nicholas’ story helps us reach hundreds of thousands of people, many of whom are also parents of children with special needs, and offer encouragement to them.
This is how many individual people Google says have come to my blog this week:
I got some good advice from friends yesterday. They helped me decide not to submit that article for republication, even though I know it has a high possibility to do well if I give it to the Huffington Post, where I am a parenting blogger, based on the amount of shares it got from this relatively tiny blog in 48 hours. Because I want to retain control of it. I want to keep it right here on my own site where I have copyright control and I can take it down when my son gets older if he asks me to. I installed a WordPress Plug-in yesterday so that people can no longer copy and paste from my blog. I recognize that I do have to take responsibility to protect my son as much as I can. So I’m not going to reply to any more comments about our IEP situation and I’m not going to answer comments on this post. After careful consideration over the course of the week, I’ve decided how much I’m willing to share, and I’m writing it here. I ask that you please respect that the further details, such as his actual scores, are remaining private. If I do ever republish that post, it will be with the personal details about Nicholas removed.
This morning I sat my son down and I asked him how he would feel if I blogged more about him.
“You know how Mommy has a blog like Stan? (From ‘Dog with a Blog’) How would it make you feel if I wrote about when you were adopted and when you went to therapy and the things you do with your teachers in school? Sometimes people we know read it.”
“It would make me feel… good.”
Yesterday my husband also told me that if Nicholas’ friends at school see my posts about his situation and make fun of him, then it will be a hard lesson to learn, but we don’t want friends like that. We cannot stifle our own stories because we are afraid of what other people will think or do to us.
So, now I’m going to tell you what happened. It’s a story that has taken almost 8 years to live, so it will take a while to read.
Nicholas is adopted. He was a foster child. We adopted him when we lived in Tampa, FL. By the time everything was made official, he was 18 months old. Very soon after, we discovered I was pregnant with Abby and we moved to Pennsylvania because the company that Eddie was working for at the time had an office there and we wanted to be closer to our family, who live in Maryland.
Around the time that Nick turned two and I delivered Abby, he started displaying some very unusual behavior. This was not typical toddler behavior. For example, once he was eating dinner and I asked him to roll up his sleeves so that they wouldn’t get ketchup on them. In response to that, he picked up a chair and threw it at the sliding glass door. He would rip doors off hinges and stay up literally all night long, just screaming. He was angry, primarily at me. We were prepared for those behaviors because of the adoption.
But, something you should know about Nicholas is that he has a heart made out of gold and he is actually very, very friendly. Anywhere we went he would talk to anyone about anything. From the moment I’ve been given the privilege of being his mom, I’ve had strangers on the street come up to me and tell me that one day my son was going to either be the mayor or a pastor because he certainly has a charming way with people.
Separately from the behaviors (which we only saw at home), he also had a great deal of difficulty with his fine and gross motor skills and displayed both sensory seeking and sensory avoiding behaviors. He could spin for hours and never get dizzy. Toothpaste was too spicy. Ice cream was too cold. Clothes were too itchy. He would cry for hours if we went to the beach and sand stuck to his sunscreen. He hated socks. He would run into the wall over and over again just because he liked the way it felt. I knew what that meant.
So I had him evaluated by the state. And he did qualify, at age two, for intervention services. He was impaired enough at that time because of his fine motor delays in areas like self-feeding and also receptive language to qualify for services. At their recommendation, and also that of the pediatrician, I went and had him tested by a child psychiatrist for the first time as well. And, for the first time of many, I heard, “This child definitely displays strong autistic tendencies, but he has very strong social skills, so I’m not comfortable making an Autism diagnosis.”
He qualified for his IEP in other areas, so no one really pressed the issue. Including me. His occupational therapists continued to treat him as if he had been given an official Sensory Processing Disorder diagnosis (which would fit what the psychiatrist said) and use that verbiage in conversation, but no one ever wrote it down. I remember feelingly strongly conflicted about whether or not I should fight to get him labeled. He was only two. I didn’t know if I wanted a label to follow him all throughout his school career when he already qualified for services. In hindsight, maybe I should have. But how could I? He had already been evaluated by the state and privately.
When he turned three, because of the way services for Early Intervention work in our state, he was evaluated again. He continued to qualify, but still did not have a formal Autism or Sensory Processing Disorder diagnosis. The pediatrician had also recommended a pediatric GI specialist because the sensory concerns in combination with some factors from his early life made it extremely difficult to potty train– to the point that impacted stool actually had him hospitalized.
Let me also say that we have high-deductible insurance. That means we pay out-of-pocket for everything until we hit that several thousand dollar deductible every year. The only year we’ve ever hit our deductible was the year I delivered our third baby…in December. So we paid for every specialist ourselves.
In our private lives, finding a new teaching job in our new state had been difficult. There weren’t any districts in our area hiring. So instead of going immediately back into the field, I had started a community toy library. I had to shut it down because taking care of Nicholas and his appointments had become a full-time job. Our family lost that business, our community lost that resource, and I had one employee working for me there. Her family lost that job and the income associated with it as well.
Nicholas was receiving weekly occupational therapy and academic services (because of the receptive language delay) from the state. But I still had concerns about his behavior, which was becoming dangerous. He was a threat to himself and the infant I had in the house.
I tried to qualify him for a behavior specialist. But he didn’t qualify because in our state in order to receive that service he needed a diagnosis, which he did not have, or our income needed to be below a certain level. Our taxes-on that higher than they wanted income- were paying for other people to receive services that we could not access ourselves when we needed them– to try to help a child we had adopted out of foster care.
At that point I called literally every therapist in our county until I finally found the only one who was willing to take on a three-year-old patient. And we added play therapy to the list of his weekly appointments. We paid about $100 an hour out-of-pocket and it was worth every single cent. The play therapist recommended an attachment specialist. And we saw him too. We paid for that as well.
That schedule continued for quite some time.
Nicholas made tremendous gains and we were very proud of him. He met a lot of his listed goals. He no longer has the impairments that initially qualified him for his IEP. He does have some slight speech concerns, some mispronunciations on occasion.
When he was in kindergarten we began cyber schooling. I wanted him to continue receiving his services through the state, and have the support of other educators, but I thought homeschool might be a better option. Cyber school offered the best of both words. Unfortunately, we saw a great deal of regression in his attachment and a lot of emotional and behavioral concerns return when he needed to see me as both mom and teacher. It was just not a healthy decision for our family.
Shortly after that time we were having our current house built. We sold our home and stayed with Eddie’s parents in Maryland for several months, and Nicholas attended the public school near their house. During that time he continued to qualify for an IEP in Maryland under the disability of “other health impaired” simply because he had been diagnosed as having failure to thrive as an infant.
When our house was finished and we moved back to Pennsylvania, that was no longer an option. They saw that he was now a functioning elementary school student and considered the failure to thrive in infancy as irrelevant to his current needs, which, to be completely honest, I agree with.
The school system tested him yet again and, unfortunately I suppose, because of the gains he had worked so hard to make, his results hovered just above the required range in every area in which he might qualify that is score based. He had no official diagnosis. The law states that the categories to qualify for an IEP under IDEA are: autism, deaf/blind, deafness, hearing impaired, mental retardation, multiple disabilities, orthopedic impairment, serious emotional disturbance, specific learning disabilities, speech or language impairment, traumatic brain injury, visual impairment including blindness, and other health impairment. In plain English, his scores no longer met any of the requirements for “impairment” by definition in any area, so they took the IEP away and gave him a 504 instead.
No one did anything wrong. They just had no choice but to follow the law.
In the meantime, we started having some more concerns about things that he was saying at home and at school and decided that it was time to go back to therapy. At first I took him to pastoral counseling with one of the pastors at our church. After a few sessions, together with that pastor we decided that we needed to seek further help and consult a child psychiatrist, maybe put him on medication.
So we did. We’ve been doing that for months. So he has been evaluated privately yet again, is still receiving private services, and he is currently being re-screened at school.
Believe me when I say that, in my son’s case, the fact that he lost his IEP is not because anyone did not do their due diligence.
As one of my readers said this week, he is simply a special child whose needs were not quite special enough.
I am sharing his story now because I believe that it needs to be heard. Because I know from my experience as an educator that he is not alone and because I want our policy makers to understand the practical implications of their decisions. It is obvious from the very similar stories that other educators have shared on my first post and on my Facebook page, that this is not a particularly unique situation.
Our family has been fortunate that my husband’s job has afforded us the ability to be able to offer our son the specialists he has needed. Not every child has that option.
I just want to close by saying that as I was writing this post Nicholas came into the room and said in his most serious voice, “Mommy, if you are going to tell people about when I saw Ms. B.(his play therapist), you should really tell them about when I saw Pastor Jeremy, too.”
So I did.