I know that title sounds like I've been watching too much LOST or 24 but that's how I feel right now with our daughter's diagnosis. Actually, just today, we learned from her neurologist that her EEG came back abnormal! This was so shocking to hear as I truly did not expect to get anywhere with those tests, I just felt hopeful, lost, and determined. Since this news has been settling in, I have looked back and put pieces together. Brian (my husband) and I are literally in the middle of our own mystery novel and we don't know how this is going to end but today we were handed what amounts to an arsenal of tools. We now know that her 'Intellectual Disability' is actually being caused by something that CAN be controlled to a certain extent. We were also told that some children 'grow out' of this when they hit the next major growth/puberty stage depending on what's causing it. Talk about shock, hope, and bewilderment all at the same time. I fought all last year to get her insurance set up so that she would be covered for Neurology. I'm sick that it's taken me this long to finally find out why she is only at a 3.5 year old developmental age as a 6 year old. I think that had I been told by someone, anyone early on when she was 2.5 and started therapies, to get her into a neurologist, we would have been able to have her seizure activity controlled enough that she would be reading by now. I would urge any and all parents of children who are simply considered 'developmentally delayed' and are getting therapies, to get to a neurologist now and rule out seizures. If we had done it early on, I am willing to bet that she would still be enjoying her kindergarten class like she was up until December when her IEP evaluators insisted that her school was to 'mainstream' for her.
The EEG test was traumatic for her and now we will be having her undergo an MRI. This will tell us whether her seizure activity is being caused by her brain structure, or her cellular structure. Blood work will look at genetic causes and another cause could be Medical Malpractice or oxygen deprivation during birth.
Now I am faced with the task of continuing to teach her to read, write and do math using carefully chosen materials and lots and lots of patience. She is getting speech therapy through her school, the one that is 'too mainstream' for her- which they are right. She sensed something wasn't right in her class, but is so social that she did her best to fit in and comprehend while her brain was shorting out. I am also setting up Occupational Therapy for help with her handwriting. She can only trace letters, and very slowly at that. The good news about today is that we can now fight this, we know what it is, we will know more about where exactly it's occurring in her brain and hopefully we will know what is causing it. This means that she has a good chance of living an independent life.
I would like to learn about anyone else's experiences with this type of situation. I would especially like to learn from a parent who has already raised a child with an 'Intellectual disability'. Were seizures discovered as the culprit? Did they 'grow out of it'? Did they go to college, get married, live independently etc. Or whatever you can tell me about your journey and discoveries.
We are in for an exciting and challenging journey as we play in the mystery novel of why she has this and who she is becoming- as our beautiful daughter's parents. I am so grateful today that we know something; anything to move forward with.