Moving out of early intervention

 

 

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.

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6 thoughts on “Moving out of early intervention

  1. Natalia Rodriguez

    Hearing all of this takes me back over a yr ago when Neesee was transitioning. I can feel what ur feeling right now Charity because I have not only stepped in those shoes but taken the steps in the shoes ur wearing this moment. I can assure u that with all that this comes with, comes only more growth for Sophie. Although we are not close in miles or talk on the phone I feel as if in our own special way we are the bestest of friends and that Sophie is our daughter and that ur family is our family. I don’t know if that makes sense. But that’s what it is. I can assure u that u will come out stronger on the other side. We always do right? Look back for that strength u had when u got her diagnosis or when uve ended up at the hospital once again and u got thru it. We have to remind ourselves that we have everything we need to survive within u right now. And so does sophie, trust that confidence. You are an amazing mother and all of this makes u better. Be grateful for that. Focus on what ur grateful for in Sophie. I guess that’s what makes this process hard is because they ask u all these questions and get u focusing on what she doesn’t do yet. Remember to just bring urself back to the focus on who Sophie is a person and how u have the most amazing relationship with her and all ur kids. Sophie may not point, may not scribble but think about her purpose in life. She has taught us all so much and she is only a toddlr still. Imagine what she can teach this world as she continue to progress. To not give up ever? Remember u can call me. I’m glad ur reaching out and thanking for givng me the opportunity to help with some insight. Take care of yourself always, Natalia.

    Reply
    1. Life's Unexpected Blessings Post author

      Thank you Natalia!! We are connected in a way I feel like our daughters are soul sisters. I know to focus on her strengths but there will be times I must face her delays head on. It does not mean I will focus on them but I do absorb them, I have to learn to accept what is out of my control.

      Reply
  2. Jeanne Chavez

    I so know how you feel. I am retired but have worked with special needs children for over 1 years. I created busing routes for over 200 special needs children in our district.
    When my daughter began the process of getting my grand daughter Jayci in pre school I was right there by her side the whole way. It is hard to see how far behind they are when you watch the evaluation. During the IEP we pushed for a certain class we felt was her best option and we felt some resistance from the school district until they actually met Jayci and observed her. We won out and got our class and Jayci is in her second year. We love her teacher and have seen lots of improvement since she started attending. The bonus to this is that my daughter lives only 2 blocks from that school so no busing was required.
    You will see such amazing results as Sophie attends school and if you don’t like something in the class or teacher demand another IEP and get it fixed. You have many rights. Also if she needs busing to her school rest assured that a school bus is the safest form of transportation for school children.
    If you have any questions on busing please feel free to contact me. California is very strict in laws governing school buses.

    Reply
  3. Jeanne Chavez

    Yikes…I should have proof read my comment. That should read over 15 years as a special needs bus coordinator. I also worked as a school bus driver for 11 years prior to that.

    Reply

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