This is something I have wanted to write about for a long time. But it really is such a tricky thing... to have kids with any kind of diagnosis. It's tricky to think about, talk about, and write about and I think that is why it has taken me so long to feel comfortable enough to express myself.
I have identical twin daughters and they have (nearly) identical diagnoses. They were officially diagnosed with ADHD (combined type and one girl has motor overflow, hence the nearly aforementioned) and Sensory Modulation Dysfunction earlier this year. And it came as such a relief! We finally had clear answers after waiting for almost a year to have them officially evaluated. Both their Dad and I are committed to advocating for them in every way. We want nothing more than to see them successful in school and beyond. I am not a "labels are for jars, not people" type of person. And it is totally okay by me if you are that type of person. But having a label affords me the opportunity to research and learn and find as many resources as possible for my kids.
But at the same time I don't want my children to be defined merely by these labels, however helpful they are. They are both insanely smart (they have so many species of dinosaurs and their specs memorized), they are super social and such caring friends. They are artistic and love to express themselves in many media. I could really go on and on, like any typical parent out there.
But my kids are different. Their brains are literally different and they experience the world in a different way from their neurotypical peers. And I want them to know that their way is not incorrect. Their difference is not a bad one.
Like I mentioned before this is all pretty new for us. This journey started a little over a year ago when we relocated to Oregon. Our new pediatrician here (who is AWESOME by the way) made a comment to me on the second visit we had with her. After observing their behavior she asked me if they were always like this (referencing the obvious hyperactivity) and I told her almost always. She asked if I wanted to explore this and I said yes. And in that moment I felt like there was hope because for the year and a half or so prior to that we honestly thought we just had "bad kids". We never considered there could be a underlying issue. There were so many times we thought it was because of something we were doing or not doing. There was a lot of guilt surrounding their behavior and there were so many time we felt like shitty parents.
Long story short, we got EI (Early Intervention) services in place at school. They qualified for services based on assessments and evaluations completed by us (the parents), teachers at school, and specialists. The girls were both on IFSPs (Individualized Family Service Plan)and had a specialist work with them in the classroom every two weeks. This helped so much while we were on the waiting list for the official determination. EI will not diagnose a child, but based on the data they collect they are able to create appropriate goals to help in areas of delay. In the case of our kids were the areas of social/emotional, cognitive (more specifically executive function), and adaptive- pretty common for kids with ADHD.
I am so happy for their EI specialist that worked with them leading up to Kindergarten. She made such a difference and helped us so much too, especially in those early stages. We were so confused and had no clue what to do, where to start. She gave us a lot of support and resources and I am so grateful for that.
The girls started Kindergarten yesterday and their IFSP transformed into an IEP (Individualized Education Program). It basically means they get formal help in elementary school. We had a big meeting before the end of the last school year, so it would be ready to go before they started K. All of the important players were there - the girls EI Specialist, a rep from the school district (who had met and evaluated them twice before), a Kindergarten teacher, the school psychologist, the special education teacher, and a practicum student from the U of O for good measure (they asked ahead of time if it would be okay if she sat in for the meeting as a learning experience, and we said it would be fine because we are nice people and this has kinda become a motif surrounding the twins which maybe can be expounded on later).
I feel like the team of people at the elementary school are so dedicated, not just to our kids, but to every child there. The Kindergarten classrooms have alternative seating (bouncy chairs, swivel seats, etc.) already in place for every child to have access to. This was important for us because we feel alternative seating is an accommodation our girls will benefit from. The goals we created I feel are perfect for our kids and they get sensory breaks and support when needed. They will break out for 40 minutes per week to focus on the areas they need help in with one on one instruction. At this point I couldn't ask for more and that may be because I don't know what more to ask for yet, but I feel comfortable with what we have in place.
It is only the second day of school, so we really need some time to see what is successful in their IEP. We just have to wait and see how they do. Outside of school we are doing PCIT (Parent-Child Interaction Therapy). This just began, so I am excited to see the results. OT is still in the works and hopefully starting for them soon. And because rigorous physical activity was recommended we start Ninja Zone classes next week. The class combines martial arts and gymnastics (two activities they both have expressed interest in) along with obstacle course training and free movement. I think they will have a blast and get the physical activity they crave.
We are doing all we can do and will continue to do all we can do. We are committed to being advocates for our amazing kids. So, I will keep reading the books, looking up articles online, going to parent meetings- whatever it takes. This is all still pretty new and I have a lot to learn. I am eager to delve more into the Special community and see where this journey takes us!
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