Okay enough already! This RSDer is sick and tired of the cold. I have been in back to back flairs since the New Year, spending more days in pain than pain free. My pain free days are spent catching up on the piled up housework or simply spending quality time with my boys. During my flairs I try to do as much as possible but each day I fall short of my goals. Despite my pain I am a wife and a mother who must take care of her family.
It is annual IEP time! A knot is impregnated in my stomach. Last week we had the meeting for Gabriel's IEP. It went extraordinarily well. It was only this time last year that he was diagnosed with a Learning Disability. Last year was rough, to say the least. It was a time of family hardships with my surgeries, my Dad's surgeries, and then Gabriels grades took a nose dive. Not only did his grades take a nose dive but his emotional well being became a concern. He was not able to emotionally handle my health and he took that stress to school. I had always helped him with his school work but last year I physically couldn't do it. We signed him up for the homework club to give him that extra help time and if he really felt stuck I would try to help him out from my bedside. Suffice it to say last year was an extremely difficult year for Gabe and his IEP process did not go well. It was our first IEP and we really didn't know the right questions to ask or how important we were. This year, so different! This year we knew what our place was at the meeting and that if we weren't comfortable with something we could say so and not let it happen. The best part is that we were more effective in the collaboration of deciding what best helps HIM to succeed. Honestly, I think that is what will make this coming year even better, the focus is on HIM and what it takes to make him able to succeed at his personal best. Basically, he is at the top of High Average ability in cognition but in processing speeds he is at the very bottom of Low Average ability. What this means is that he is a really smart kid but it takes him longer than most of his class to "get there". When it takes that long for him to really understand the material it creates a level of self doubt and ultimately a feeling of being stupid. It is heartbreaking for a mother to hear her son say he is stupid. I have worked with him for years in building a confident child but when he is in school and looks around at the other kids who are working steadily, knowing what they are doing and he is unsure of himself, that is the moment where he feels stupid. This years IEP meeting was all about how we can change that for him. He is smart so he belongs in the general education classroom but with an inclass resource teacher to give him the extra help as he needs is TO HELP HIM SUCCEED! This years teachers have noticed his ability and are actively working with me to implement strategies that best fit his personal needs. In the end that is what a parent really wants. Teachers who see how wonderful their child is and want to bring out the best in them.
Coming soon will be Lucas' IEP. Our journey with Lucas has been tough. He is my special needs child. Next month he will be turning 4! We have been receiving services for him for the past 2 years. In my gut I knew he had a speech issue when he was 18 months old because he was not even able to babble. When I had Early Intervention come in to evaluate him I felt horrible because I could not brag about his accomplishments. At the end of the evaluation they asked me a question "Does he make any other sounds that he did not make while we were here?" I stared blankly at them because, well, besides screaming and crying and the occasional "Dada" he only coo'd. You know what I mean by coo'ing. The constant Oooo or AAaaa sounds. Lucas would point to things he wanted but I learned that his pointing was even delayed because he couldn't isolate one finger, Lucas pointed with his whole hand. I have learned so much from our early intervention specialists. Lucas had qualified for both Developmental Intervention and Speech Therapy. Those women changed my life! I thank God that they came into my life every day. They gave me the foundation on how I need to proceed with Lucas' life. Lucas has come a long way in the past two years. We have come from him only saying sounds and words while in therapy to learning to be able to use them in play. We have built a vocabulary and he is now at 5-6 word sentences! The hard part is that most of it is still unintelligible, I can understand him most of the time though so I act as translator within our family. What is fun is that Gabriel is finally beginning to understand his brother so sometimes when I am struggling to understand what Lucas is saying Gabe can step in and tell me what his brother wants. As difficult as it may seem we are actually enjoying Lucas' new ability to talk to us. I love having conversations with my little guy! We do need to explore some other area's that he is showing a developmental delay in. He is currently being evaluated by the school district and those reports will be reviewed during his Annual IEP. We are lucky that Lucas is in a great preschool program that has teachers whose specialties are in special education. Honestly, I have learned to take everything in stride when it comes to Lucas and his abilities. The more I learn about his Apraxia and other issues the better I get to know my own child. He is not such a mystery anymore. The hardest lesson I had to learn was to stop looking at the milestone charts because he was so far off that it was discouraging. Now, I just take each victory and each set back in stride with the knowledge that together we will get there. Lucas is not in this battle alone. I am with him each step of the way and I will be his strongest advocate always.
With all of this going on it is easy to loose sight of yourself and put your marriage last. That is why Valentines Day was so important. It was a chance for us to just be together. Last week I also had the opportunity to sing in a Tribute Concert for my old high school choir teacher. That was a spiritually rewarding experience, saying Thank You to a teacher who gave everything she had to her craft but now, while she is fighting for her life I can help renew her spirit to fight. I am thankful that I could be a small part of that event. On a daily basis I keep a focus on my health and on my childrens education. I do my best with my home but honestly this past few weeks have proven to be too hard for me to do much of anything. I cannot wait for Spring. The end of snow. The end of freezing cold. The beginning of flowers and sunshine! Then after Spring comes the wonderful healing warmth of Summer. It has been a long cold winter and I am sick of it. I am dreaming of the warmer days when I can spend more days pain free and doing the things I really love.
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