- Posted June 16, 2014 by
This iReport is part of an assignment:
Raising a special needs child
Six years ago my husband and I welcomed into the world the most amazing little girl, Ava. I knew then that she had changed my life forever, I just didn't know how much or the journey we would be on. She was born at 41 weeks after a normal pregnancy and pretty normal birth, she was 9lb 12oz and her Apgar scores were all good. She was our first child and we were completely consumed with love. We brought her home and she met most of her early milestones pretty much on time, but as we approached a year she wasn't talking, walking or finger feeding herself. We were still not overly concerned because everyone was telling us every child develops at their own pace.
At her 15 month appointment we had our first indication that something may not be right and we learned of Early Intervention (EI). So we set up an evaluation with the EI team in our area thinking that she needs a little help but this will get her back on track. During the evaluation the team recommended we take her to a neurologist. This was the first time we considered maybe this was a bit more serious then just being delayed.
She was set up with EI services 3 times a week, which then increased to 4 times a week at age 2. We also took her to see a neurologist who did blood work and an MRI. Everything came back normal. Over the years she has seen a developmental pediatrician, a clinical nurse specialist, genetics, a rheumatologist, a metabolic physician, the neurologist and the developmental team at CHOP. Many of these repeatedly, every six months or so. So far every test has come back normal ruling out Autism, Cerebal Palsy and at least a dozen more.
It was clear she was not developing normally. She had, and still has, an extensive list of symptoms associated with disabilities: global developmental delay, low tone, severe mixed receptive-expressive language disorder and more. Every doctor agreed she is disabled and it is not something she will outgrow. Unfortunately, no one can give a name to Ava's condition. She is considered undiagnosed.
I can't begin to tell you how incredible frustrating it is to have no cause. We research everything and anything. We have blamed ourselves and wonder what we could have done differently and what the future will hold. First we had to accept that she was behind. That wasn't too difficult, we thought, okay we get her the help she needs and she will catch up. Then over the next two years we had to accept that it was going take her longer to catch up then we originally thought. During this time my husband asked me if she will ever speak. I looked at him like he was crazy and said of course, who has ever heard of a person who just can't speak for seemingly no reason at all. Finally we had to accept she may never catch up, she may never speak and that she is disabled. We had to mourn for the hopes and dreams we had for her. Gone were thoughts of grandchildren, marriage, college, high school proms, hearing her first words or saying she loves you. We had to accept a new reality.
I never had much contact with the disabled over my life and, like many others, I was often uncomfortable around the disabled. I wasn't sure how to proceed. I had to deal with my own fears and worries. At the same time had to convince our family and pretty much everyone else we met that she is disabled. She looks completely typical and people have a very hard time understanding that she is not. Instead of dance class and gymnastic we had therapy: physical, occupational, speech and feeding. At one time Ava was seeing ten different therapist a week through EI and then eventually through outpatient therapy. Outpatient therapy was difficult to obtain because our insurance would only cover services if it was related to a congenital disease or if she had acquired a skill and then lost it, which is common in Autism. There was a period of time where I couldn't even say the word autism because all we heard was if she had autism she would get more services, but every doctor we saw said no to autism. Finally, there was a change in the law and we were able to get her the outpatient therapy she needed.
We also had to accept that we may never know the why or have a name for Ava's disability. Just after her fourth birthday I took her to see the neurologist to see about repeating the MRI. He basically discounted anything I said and told me there was no need for further testing. She would end up with a diagnosis of Mental Retardation once she was older since there is no other cause for her delays. Those where probably the most painful words I have ever heard; to this day I have a hard time speaking those words and cringe every time I hear someone use the "R" word. I walked out of his office and read the slogan on the wall "Hope Lives Here!" I walked down that hallway and had to go into the bathroom I was crying so hard. Hope for who? Certainly not us, the doctor had given up on Ava. I have come to terms with not having a name and instead focus on doing everything I can to give Ava the best life and all the help that I can to make the most progress possible. I will not give up on her. There is a positive of not having a diagnosis. There is no prognosis so anything is possible. I believe that although she may not ever be able to speak, she will learn to communicate and prove that doctor wrong.
At age 3 it was time for Ava to transition from EI to the school system. We were warned, repeatedly, that we were going to have to fight for what Ava needed. We were told to expect that she would change schools every year or two because our district tries to keep children in district and they move the special education program's to wherever there is room. This also meant that she would not attend our home school and quite likely would be in a different school then her siblings and would have new peer groups with each move. This seemed crazy and insane. Surely the school system goes by the child's best interest and what the qchild needs and is entitled too? Ava was scoring at less then 2% on every test given to her. Every doctor and therapist advised that she needed a full day pre-school program with each of the therapies. The school offered a half day program in a regular K-5 elementary school with 15 minutes, once a week, of each occupation, physical and speech therapies. She was currently getting a hour once or twice a week of each of those with EI.
We went to visit the class and were terrified. Every child but one was to move up to kindergarten the next year and were significantly bigger then Ava and all could walk and talk. And oh yeah, they were ALL boys, about ten of them. No way were we putting our petite 3 year old little girl, who could barely walk and couldn't talk and understood very few words into a room of what looked like pretty typical 4-5 year old little boys. We wanted her in a full day class out of the district at a specialized school. We thought this would be the best place for her to get the most intensive therapy to learn and progress enough to join general education at her home school for kindergarten (we had yet to accept how serious her delays were).
So we sat down with the special services supervisor and we came up with a compromise. Ava started in that half day class, with a one-on-one aid, for the rest of the school year, which was about a month. Over the summer she would attend the extended school year program and the district would find or create a full day program. That September, and for the next two years, Ava returned to the same class room which was now a full day pre school program with 3-6 other children that were also significantly delayed. The first year was okay but we were still not convinced that this was the right placement. The second year the program was tweak a bit and a new teacher and a new speech/feeding therapist were brought in. The changes were a blessing. The progress was slow but there was progress. This past year the program was turned into a K-1 class with 4 students, a teacher and one aid. The kids go into art, music and gym with their typical peers. It is hopeful that Ava will remain at the school through fifth grade.
Recently, I had the opportunity to talk to Ava's school about her. This is what I told them:
"How many of you know someone who doesn't speak English? Well Ava is a lot like that, she may not understand what you say or be able to speak but she is also a lot like you. She can run, swing, slide, swim, play with dolls and cars. She can wrestle with and fight with her brother. She can watch Sofia the First, listen to story books, go to Sesame Place, the beach, out to dinner and the movies. She can get happy, sad, mad and silly. She can play in the sand, snow and mud puddles. The most important thing she can do is learn. By watching all of you she can learn most of the things you can do."
We conceived Dominic when Ava was 16 months old and he was born just after her second birthday. Over the past few years, I have watched Ava grow and learn by watching her brother (who is a very typical little boy). Some of the things he teaches her are not always things we want her to learn, but the fact that she is learning and showing more progress then she ever did with all of her therapies is the most exciting thing ever. Everyday she amazes me. I have no idea what the future holds for my baby girl but I am so excited to experience it with the happiest little girl I have ever met.
- My life