My Crew

This week I had Ryan's parent teacher meeting with Miss Eileen. We talked about his IEP goals and how Ryan was doing in the class. It was crazy to hear that she thought he was better at numbers than letters and colors. This gave me a bit of a chuckle as little did she know this truly fits our family. It was really nice to hear how your traits are coming through in your child. When a child is so delayed and non verbal its hard to know what of the parents characteristics it has received. She has been having Ryan join a social group at school, its a group for more verbal kids that she feels he will really benefit from. They are also more social than the other kids in his class and as Ryan is really showing a want to play with other kids. She feels this group will be great for teaching him to share and teaching personal space with other kids. All things he really needs to learn if he ever has a hope of going back to our town school and he doesn't get the opportunity to hone these skills at home as he is an only child. Communication is moving along slowly and hes now up to a Gotalk 4 communicator, she feels his distractability is  holding him back as hes so interested in everything else going on in the room that he has little interested in pushing the buttons. She was shocked when she was doing his evaluation for his IEP how much he actually knew when he was one on one in a room by himself. His goals for his next IEP will be evaluated in class and in separate setting, to get a true read on what he is accomplishing. I'm kind of pushing this distractability to the back of my mind for now, and trying not to let my brain run away from me in terms of what it could mean etc. Hes a little young to be diagnosed with ADHD but I'm praying he doesnt have that mountain to climb along with everything else. I'm hoping its just a maturity thing, hes always been a very visual and interested child so I'm hoping as time moves on he will learn to concentrate. My other thoughts are "Is he bored in the class?", but I'm trying to keep a lid on this. Its just so hard to tell with Ryan.
Miss Eileen also mentioned a video she watched that a consultant brought in. 3 kids were put in a room all with special needs, no adult was in the room. The very verbal child stops being verbal as the other 2 are not responding back, and one of the little girls starts trying to do therapy on another. This story really put a fire in my belly to find Ryan some inclusion classes to make up for what hes not getting in school. 

One evening this week I was back at Ryan's school for a talk on "The Emotional Aspects of Having a child with Special Needs" The presentation given by the mother of a child with cerebral palsy, who also happens to be a pediatric therapist, discussed how to move through the stages of this journey.

The biggest take aways i got from the presentation was to always have some shoot for the stars goals and that we are mothers first. Ryan's first PT  Marilyn was a great therapist in this way, she always included a huge goal for Ryan that we would aim for, she was never content with just putting down the next milestone on his IFSP goals, she never gave me homework that was impossible to keep up with and always believed in Ryan, and put the mother child relationship first.
The discussion that followed was very inspiring, all the mothers had a child in Ryan's school and most had been through huge difficulties with their child. The night really opened my eyes to how lucky we are as Ryan didn't have any major birth trauma or traumatic NICU stay. Many of these mothers are wary of even accepting respite for their child. As one put it " I spent first 2 years saving his life, its hard for me to leave him in anyone elses care". The meeting was cut short when one of the boys who was in the next room with the school aids started seizing and had to be taken away by ambulance. The medical issues and fragility of life is very real in this group I now belong too. Sometimes even with how delayed Ryan is I feel like an outsider looking in but while all our struggles are different we have so many similarities.  

Read this article this week and thought it precisely got to the core of what it means to have a child with a disability.


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