We were never told life would be easy, but it will be worth it. I pray daily that I can become the women, mother and wife our heavenly father would have me be. I definitely make tons of mistakes and have so much to work on. I wish I knew just the right the to do and just the right things to say but I don't. I am not a writer and don't claim to be good at it but I wanted to express my feelings today. I have so much frustration bottled up inside that I might explode if I don't express myself. I definitely don't know what to do when it comes to my oldest Calvin and his needs. Here is a little of what I am currently struggling with.
Calvin is a 6 year old little boy with a summer birthday. He has been developmentally delayed since I can remember. He started out in early intervention then went to specialized preschool with the district. Our goal has always been to not need an IEP and to be mainstream. I honestly didn’t even know what an IEP was until I was forced to learn having a child in need of it. I am sure I am not alone in my lack of knowledge of the special education world. Never in my wildest dreams did I imagine this life or having to learn everything involved with children that have delays.
Calvin attended small group kindergarten last year but since he had a summer birthday I wanted to keep him in kindergarten another year in order to not be the youngest kid in class. Well little did I know, that trying to do this with a child receiving special education is a challenge. They had recommended mild to moderate 1st grade. Since repeating small group kindergarten is not an option since he is special needs, our options were to go to mild/mod 1st grade or mainstream kindergarten with resource pull out. We chose to repeat kindergarten which meant mainstream kinder with pull out. This was pretty much bucking the system. We started this journey and the school seemed to be overwhelmed and frustrated with Calvin. We started to have meeting after meeting every 2 weeks with them telling us that we needed to have him in life skills. When that was refused they stated that their “Recommendation” was to go back to small group kindergarten. We love the small group kindergarten teacher but Calvin was already starting to make such improvements in our eyes. He was memorizing sight words and trying to read books unlike he had ever tried to do. Needless to say, we fought for him to stay in mainstream. He learns so much through peer observation and involvement. There were many that disagreed with our actions to keep him in mainstream but there were also so many that agreed. He has made tremendous strides this year. He currently knows over 50 sight words, tries to read CVC words at times, can count to 40 really well, knows all letters and sounds. In my eyes he is ROCKING it. He has made drastic improvements for Calvin. Granted he is not like the other kids but I honestly feel keeping him in mainstream has been the best thing for him this year.
This brings me to currently our situation. Well, the school is now recommending placement for next year, 1st grade. So obviously they recommend the lowest functioning and most restricted environment for Calvin, Life Skills. WHAT THE HELL! He is definitely not a life skills classroom kid at this point. Calvin learns so so much by peer modeling and being around peers that can not read and most don’t talk is not going to help him progress as fast. He will definitely get all his work done because he will be ahead of the class. Right now they are saying he doesn’t get his work done like the other students and so they are saying cognitively he is super behind. Granted he needs a little more assistance than he is currently getting in a classroom with 28 students with 1 aid. We had tried to get a 504 last year to see if having an aid assigned to Calvin would help but that was 100% shut down all year long. (Funding is definitely an issue which I understand… sort of). I feel like Calvin needs to be in the least restrictive environment possible. I am not saying he has to be in mainstream. But I know he can do mild to moderate 1st grade with integration into mainstream when possible. I don’t understand why they are so against this. Calvin really struggles to write which is extremely common in fragile x kids. He is starting to get cvc words which is very important to read but he is not there yet. We will be before summer is over. I am certain of it. He can read sight words in books but since he can’t read the CVC words his reading has been difficult.
The thing I am having a hard time wrapping my head around is the fact that last year, they were recommending us go to mild -mod 1st grade. Now we are doing amazing compared to where we were last year and now they are recommending life skills. Both last year and this year we did kindergarten. So why do they feel like it is acceptable to say he was be recommended a high functioning placement last year then he is for this year. His teacher was doing a recommendation like he was going to 1st grade last year since it had to be special requested to repeat kindergarten. So why why why is a higher functioning kid this year being told he needs life skills class placement for 1st grade when he would have went to mild/moderate 1st grade had we continued onto 1st grade this past year.
My stomach as been tossing and turning all morning since the meeting. You know that feeling when you have so much frustration and anger inside your chest that screaming is the only thing that sounds acceptable. That is the place I was at during this meeting. Pretty much they only think he should go to life skills 1st grade. That is their recommendation which also means that I can go and observe that classroom without a problem. On the other hand, I can’t observe the mild to moderate 1st grade without special permission since they didn’t recommend it. Also they are 100% against him going to that class next year. Let me remind you…. That’s the class we would have gone to this year without our increased knowledge of everything, sightwords, trying to read, counting and social skills. Sure why not put him in life skills. He’s not your kid. Why do you care. If he is in a different school then that is just bonus for you. He is then out of your hair! Perfect! This kid is amazing and super smart. I don’t know if you have read the “Spark” but you should. It is very inspiring and has taught me that Calvin is more and can be smarter than others realize. Ryan’s mom was just talking with him about how much Calvin has improved this last year and how keeping in the mainstream class was the best thing for him even though it was super hard and stressful all year long.
Can I just stay, I hate dealing with IEP’s and special education needs. It is super hard to come to terms with the fact that your child will never be “mainstream” or like everyone else. Let alone when I see more potential then they do. I have a deep love for Calvin’s small group teacher that saw more in him and continues to see more and the person he can become. She didn’t think mainstream was the easiest thing for Calvin but knew he has been known to rise to the occasion. I feel like he has. He is not like everyone else but he is striving to become like them. He gets so excited when he “matches them.”
It is really hard when I am in a meeting and I feel like my back is against a wall. When people are telling you this is what their recommendation is but obviously us as parents get a say. But really, if I insist on mild/mod 1st grade it is going to be a battle all year long because they don’t think he should be there. So they are going to look for ways he is not performing and blending rather than for ways to make him perform. He can do mild to moderate first grade and rock at it. They say cognitively he is struggling but I see great improvements amongst the struggles. He is not a disruption to the class and he gets hours occupational therapy as well as 1 on 1 Applied Behavior Analysis therapy outside of school. Cognitively I have scores and proof that he has made drastic improvements this past year even if their school work pages don’t show the same thing.
To maintain his progress and become his best self, I believe he needs to stay in the high functioning class he possibly can. If that is mild to moderate 1st grade then that is where he needs to be. Why does everything …. And I mean everything…. In our lives revolving around Calvin have to be a battle. Why can’t others see his potential. Why don’t they want to push him rather than put him in a class where he will probably be bored or slow his progression. Fragile X was not something I expected and no something that Calvin knew how to deal with but we are finding ways to cope. We are finding ways to help him succeed. We are finding ways to grow. His pure love and joy for life shows me that we must “try everything” and “never give up.” I will never stop trying and I will never settle for less. That is probably why Calvin joined our family. He wanted to come to a mommy that loves perfection and struggles with adversities. He needed someone that would never stop believing and knowing he can do amazing things.
What do I even do!