If I back up a bit last year she struggled in school, not so bad that she needed to be held back but she had a lot of anxiety about tests, she struggled to keep up and told me she felt dumb because she would always finish last. She didn't understand a lot of what was being taught, she struggled with reading comprehension. She would space out a lot and just had a lot of little "quirks" that led me to believe that something wasn't quite right. I knew she was smart, but it was seeming that she danced to the beat of a different drum and I didn't know the tune. It seemed as though she was stuck in her own body and not able to get out. She was sad a lot, had no self confidence and worried like mad to the point of tears about everything. All of this from a kid who is very loved and told and shown that day in and day out. From a kid to who had an amazing teacher that went out of her way to make school easier, fun and comfortable for her.
This past summer we went through a series of MANY tests to see if we could pin point Ellie's issues. I don't know what else to call them other than that, and she had (has) many of them. She was so sick of going to doctor after doctor (as was I)! We tested her for seizures, celiac disease, anemia, literacy problems and a ton more. We ruled many things out (seizures yay!) and got "diagnosed" with a few things. Now let me say I don't need a label for my child but I do need to know her needs so that I can know how to help her. She was diagnosed with Sensory Processing Disorder which is very complex as you can imagine with all of the senses we have. She mainly has "defensive auditory dysfunction" which is basically she can't drown out noises and focus on one thing at a time. So if she is reading and there is ANY noise in the background (shuffling feet, crinkling paper, someone sniffing) her brain tells her it is all VERY important. She is overstimulated and hugely sensitive to (and by) all noises. She is often seen with her hands over her ears and if the noises get to be too much she will growl and scream to drown them out. Her body sends her the "flight or fight" responses to almost all noises that you would get if you were walking in a parking lot and someone honked, that feeling of being in danger. That is what her brain does to her for almost every sound. She is currently in Occupational Therapy for it doing and intense listening therapy.
Add to that dyspraxia which is also under sensory processing disorder. Dyspraxia is "an impairment or immaturity of the organisation of movement. It is an immaturity in the way that the brain processes information, which results in messages not being properly or fully transmitted. The word 'dyspraxia' comes from the Greek words 'dys', meaning impaired or abnormal, and 'praxis', meaning action or deed. Dyspraxia affects the planning of what to do and how to do it. It is associated with problems of perception, language and thought". Dyspraxia is described as having two main elements:
- Ideational dyspraxia: difficulty with planning a sequence of coordinated movements.
- Ideo-Motor dyspraxia: difficulty with executing a plan, even though it is known.
"Developmental dyspraxia is difficulty getting our bodies to do what we want when we want them to do it", and that this difficulty can be considered significant when it interferes with the normal range of activities expected for a child of their age. In addition to the physical impairments, dyspraxia is associated with problems with memory, especially short-term memory. This typically results in difficulty remembering instructions, difficulty organizing one's time and remembering deadlines, increased propensity to lose things or problems carrying out tasks which require remembering several steps in sequence. So motor planning and ideation are the issues she has because of dyspraxia. She is also in OT for these. When her brain gets too many signals and gets overloaded (which happens many times a day) is when she has fits. Her fight or flight responses take over and she yells, is violent or runs away (to her room, alone time etc). We have been in therapy now for 4 months and we are just starting to see some improvements in her coping skills. SPD is a neurological problem. It doesn't go away and you don't grow out of it. With therapy you learn to cope better and recognize when you are getting overloaded and have a handle better on preventative maintenance. Left untreated it will get worse and harder for SPD to cope and live a normal life. She also has a few less impacting symptoms of SPD, she is really sensitive to smells and along with that either brings happiness or anxiety. If she smells something that she left at grandma's house she is extremely happy because it smells like grandma and she likes her. If we go anywhere near a public bathroom she immediately (even before smelling it) gets stressed out and almost hyperventilates. She refuses to use public bathrooms unless it is one she has been forced into before and knows it is ok. It has to be familiar to her like the "John Deere" potty at the farm or the bathroom at the Vision therapy clinic.
Vision Therapy, yep something else we had tested. I did think she needed to be tested because she could read so her eyes were fine right? Nope. She has 8 different things wrong with them. She is in vision therapy once a week and we do therapy 5 days a week at home. She also has glasses now for near work as she is far sighted and everything that is 12 inches or closer to her face is blurry or she sees double.
It now makes sense why she struggled in public school so bad. Now that she is home we have struggled to get into a routine that works well. One month in and I think we just may have found our groove. It has been a rough road figuring out how she ticks. We do a lot of things much different than "normal" but she seems to be learning. This post has gotten a lot longer that I thought it would be so I will end. I will come back and share how we do school, what I have learned about her learning style and the goals I have set for her (and myself) another day.
