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Special Needs
mightmom13
member
SPD+, I don't know how to "describe" DD
mightmom13
member
So there have been some situations that have come up or are coming up that I kind of need to describe DD's SPD, motor/speech/feeding/emotional delays not to mention the physiological aspect of her issues. She is very very possibly mitochondrial which to some medical people and therapists mean something. But to some family, even with understanding of therapies, daycare teachers, daycare admins, and some work people (I know I don't have to but we are in the middle of some major political BS so it's watch your back, play nice, need to know info).
I wish I could say DD is just DD but no one but me gets it - no one. She is high funtioning, possibly higher than she should be at this age cognitively which is a major blessing but challange with all the delays. Like being trapped in a hard body and different neuro rhythm.
I want to be able to get her the assistance (without forms for now as she is only about 2 and in daycare) she needs, talk to understanding family/friends one on one, and blurb to work in a sentence or 2 when people/bosses ask how she is doing per I have been on FMLA a lot of shifts lately. Do I just say she has/is special needs, I know that SPD is neuro-based like ASD but it is not the same (no confirming that she is not ASD but a lot of signs point to not fully ASD - which in and of itself is a symptom of mito), or do I just say she has a mitochondrial disease with delays since they don't know she hasn't been diagnosed yet?
Sorry this has really been frustrating and confusing to me as even with labels people can't understand without going into everything since she has many issues and labels are still labels. It is need to know at school now because her body is getting so tired and withdrawling at daycare and waterplay starts this week. And the biting and feeding. She needs some accommadations (sp? sorry) but to be understood that she is high functioning. Any help would be great and I am going to re-read and hope no offense is made by word choices in this post.
This discussion has been closed.
Re: SPD+, I don't know how to "describe" DD
When I try explaining to others DS's personality...I tell them he SID/SPD which means he is sensitive to a few areas and he can get over stimulated easily. So, it is difficult for DS to do certain activites sometimes (ie. circle time, structured group settings) Now I don't tell every single person of his difficulties...its more for close family & caretakers (teachers, babysitters, etc)
Although we know that he has sensory difficulties, it is also quite easy for parents & caretakers to forget the difficulties the children with SPD/SID face, and may seem to others like a stubborn & willful child.
I notice though, when DS was in OT we saw great improvements in class behavior in 3 months of therapy. Sadly, in February we decided to drop OT due to insurance changes (insurance doesn't cover therapy costs although children need this) Since dropping the OT, we noticed a regression in his behavior in classes. We decided yesterday that we will continue with the OT.
It is mainly the caretakers and searching for an outside the family sitter - it's hard right now because she knows how to trick everyone (but me, she tries to trick SLP, OT, and PT but they don't let her) into giving in; but she chooses the shut down method at daycare so she is very left behind, also her main teacher is going on vaca and waterplay starts tomorrow.
I am glad you got private OT - I know it must suck to pay - but I was happy to hear that our PT does private today if DD needs it past 3.
"I would say she has a potential genetic condition and that they can expect the sort of behaviors and delays seen in a child with SPD and ASD without cognitive delays."
Thank auntie - this is a good statement. She is SPD so at least knowing that helps. Yes, again no broadcasts, but I have a in-town cousin who's daughter has CP and they have been around the block when it comes to school and everything and she listens quite well to my ramblings, so I want to share a bit. We also have a huge family reunion coming up and I know that certain people will understand and ask when they see certain things and I don't mind sharing with those certain people. She will have a NT second cousin there roughly the same age, so there is that too.
This one guy at work, a supervisor, is getting really close to being over the line with questions AND luckily I just got an interview for another place doing the same thing today that is closer to home but still need the schedule - though I can get around that I know without saying anything really. Fingers crossed.
Did you get an official dx from a therapist for SID/SPD yet?
If not, and you descide to go the route of an evaluation & therapist through a therapy company, thats good.
Schools/Daycare will take a dx, but not a unofficial dx from a parent. Also you will find that prior to kindergarten you will need to seek out a daycare/preschool which is willing to work with your child. The preschools/daycares in my area either want more money (so they can hire a teacher to work 1:1 with your child), are reluctant to hire a non-"textbook" child. I found 1 in my town and, the only hours are 9-11 2x per week, but its something.
We decided to go out of pocket for DS with his therapy, however his insurance (if they cover the therapy sessions) will keep in touch with the therapy company to make sure your child is on the right track too - however there will come a time (maybe/maybe not) were the coverage doesn't fall anymore for her. For us, this years insurance policy said that unless DS had a co-morbidity (co-dx) with his SID/SPD they will deny coverage; A Co-Morbidity means that there is another dx present (Autism, etc) in addition to SID/SPD. However in DS's case there is no co-morbidity present - therefore everything is out of pocket for us.
The school/daycare just would probably want to know the evaulation findings as well as any information to help the child in the classroom setting, which will only help your child. We didn't want to go through govn't funding for therapy.
Early intervention is the key though, and as soon as you can get therapy the better. Wait times for evaulations and therapy is a long process.
OH, one more thing I wanted to add. Yesterday I gave one of his class teachers a copy of a packet to help them understand SID/SPD, they seemed to still be confused - thinking that it was lack of confidence that made him act the way he did sometimes. This was my explanation:
"SID/SPD is more of how your brain processes information. You have 7 senses right? Now think of your sense of smell, and you smell something in the air. To many people this fragrance may be a beautiful, calming scent. However to you, or someone who has SID/SPD that scent may make them have a headache, or want to vomit. SID/SPD is how your brain processes the 7 senses (Smell, Vision, Touch, Taste, Sound, Vestibular & Proprioception) , and each of your 7 senses is processed independently & differently."
This is a great video on YOUTube explaining SPD:
https://www.youtube.com/watch?v=D1G5ssZlVUw