I can hardly believe the time has come to begin our transition from Easter Seals (early intervention) into the school system. Wow! Time has flown by, I still remember as if it was yesterday the day we were given the horrifying diagnosis that our fifth child our beautiful little girl would most likely perish. Yet here we are on the verge of her third birthday just three months away.
Yesterday I attended part I of a three meeting process. I met with our early intervention support coordinator Judith and a worker for the Child Find public school program. I arrived with the two babies praying they would behave so I could get through this meeting quickly. It was simple, pretty much just an exchange of paperwork and explanation of the programs Sophie may qualify for.
The night before I had completed the questionnaire about my child and the reason we were seeking help for her. I actually ran out of space and I was just noting her developmental issues, then they ask for prenatal information for the mother and all the child’s health complications. All I can say is it was a lot and I only noted the most critical issues. Then I had to explain her behavioral problems along with how she interacts socially with others. The most difficult part for me was when I was asked to “describe three or four things about my child to be considered strengths, things my child does well or personality traits”. I sat there for over a half an hour gasping at anything to run through my mind and the only thing I could come up with was her determination when she wants something. It broke my heart, how can I have an almost three-year old and cannot come up with any strengths. I felt an emptiness I could not describe as if something should be there but there is not.
I handed over the filled out questionnaire with all the personal documentation with a detailed description from the last neurologist/geneticist visit which summarizes the most critical aspects of her complications. They asked for all the doctors treating her and gave me two small spaces for the information, seriously? I just copied the 10 business cards and gave it to her knock yourself out, I said. Her pediatrician’s file alone is almost 4 inches thick,seriously. I thought I was fine, I made it almost completely through the meeting when she hands me yet another two communication questionnaire’s to fill out. This is where I felt like I was falling through a black hole, I felt numb. The one that was really hard was a communication skills checklist of fifty-five questions I was only able to answer “yes” to five. I felt like a failure in that very moment, I turned to Judith and said “this is so hard for me right now” and she looked at me with a heavy heart and said “I know” patted my shoulder and got up and took the stroller for a spin so I could finish filling it out. The babies were both starting to cry for attention at that time. It was simple questions like “does this child point” or ” does this child play with toys appropriately” or ” does the child scribble on paper”. All I could mark was no, no, no. It was a very somber moment for me. But, this is my reality.
We finished up the meeting discussing Medical Homebound Services where a teacher and the therapists come to the home, it’s for medically complex children. If we choose the homebound program the services are very limited because it’s one-on-one, possibly only an hour or maybe two a week. At this point at the advice of her doctors this is her best choice until her immune system becomes strong enough to be exposed to other children.
Part II of the process is the actual child evaluation, I already told my husband I cannot take the baby with me that day so I can keep myself together. All I can say is this is so hard, we all want the best for our children typical or special needs. When their development is out of your control and you know you are doing everything possible to help your child it becomes so much more frustrating when you see minimal progress. Part III is the actual IEP meeting. Judith recommended I try to go without the babies to the IEP meeting so I can really focus and she will be there by my side to make sure we are getting the best services available for Sophie. I will be reaching out to my huge network of support primarily on facebook to help me establish goals and prep me for this important meeting.
I have so many mixed feelings right now. I am so proud of Sophie, she has come such a long way against the odds with her health and her large deletion of chromosome 5. At the same time I am sad because she is still a baby developmentally. I don’t think I’ve ever really taken a step back and realized how far behind she really is until now. It’s very painful but at the same time I love her so much and look forward to helping her learn. I’m a mixed pot of emotion right now. No matter how bad it may look it could always be worse is what I tell myself and I will never lose hope for her. She will grow to her full potential I will make sure of that.
When the meeting was done Judith walked me out to my car hugged me and told me she will make sure we get all we can for Sophie. She took over Sophie’s case a little over a year ago and she is wonderful. Judith took the time to build a relationship with us, she got to know us and I am so grateful God put her in our path. I then called my husband to give him a quick update and quickly called Jacqui my close friend and fellow CDC mom. I needed her to assure me everything was going to be ok, that what I was feeling was normal and she did just that. I’m not much of a phone person but in that moment I really needed her. I needed someone to distract me so I would not let the overwhelming feeling of sadness take over. I am lucky to have her and every single one of my friends especially my special families who I connect with on facebook from all over the world. In moments like this it’s so important to know there is someone else that knows exactly how you feel. That you don’t have to explain yourself because they just get it.
I will prep myself with lots of prayers and good energy for part II of this process because whether it’s easy or hard, we have to push forward.