1. What brings you here? - My daughter has had spd issues since she around 6 months old. Shes 6yrs old now. I was searching for a supportive forum or group to interact with. Also i was deeply searching for a group like this because im stressed over a school meeting coming up.

2. What is your relations to someone with SPD? Do you have it? a child of yours? Do you treat SPD kids as a professional? -My daughter has spd, i may have it but am not sure. I am diagnosed with anxiety but watcing her grow i see so many similarities.

3. Share a little of your journey if you'd like. - At 6 months old my daughter stopped eating or drinking much. She never cried for food, or if she had a wet diaper or anything like that. Certain peoples voices made her cry as soon as she heard them. Thats when it began for us. She was failure to thrive, we had swallow tests done, bloodwork done, other tests done and in the end they were all normal results so she got sent to OT with an anorexia diagnosis and failure to thrive diagnosis at age 3. Weve been in ot since then and the brushing has somewhat helped her regulate her body but her mouth remains an issue, though slightly less.

4. Is there any immediate help you need? Yes. My daughter had been developmentally delayed and on an IEP at school since pre-k. Last March the school was really not following the dr's orders, which were "Monitor this childs intake while at your facilities" and i went to meeting after meeting trying to get them to understand that she needed this and her nutrition was suffering. Soon after they finally started attempting to follow this she got very sick. A virus attacked her body and she had no immune system due to nutrition issues. We almost lost her. She was ambulanced to a childrens hospital and we had to stay there awhile and then remove her from school for the rest of the year. We tried to take her to a specialist to see if she had autism because her ot recommended testing but they told us her nutrition issues caused delays and it was too hard to tell if the delays are from autism or from nutrition.
I homeschooled her the rest of kindergarten and by summer she had put on the 7 pounds she lost in the hospital (wouldnt eat at all there) and i was able to keep her comfortable at home with what she needed to function. I sent her back to school as a trial first grader and she blew them away. Shes making honor roll, exceeding grade level expectations and finding her way.
We started this year with a new doctor and an updated iep that has special transportation for muscle weakness and needing an aid to get on and off the bus, needing small group settings (bus allows this as well) and monitoring during 2 meals and a private area for meals if needed, and a snack between each meal (one is a nutritional drink.) Her teacher this year is amazing. Shes soft spoken and really keeps my daughter calm and happy.
The problem is that her iep review came and she is getting dismissed because the developmental delay testing they did showed she was doing well and with her grade level expectations. Once they told me this i figured we could get a 504 for the bus and for the snacks and mealtimes but i was told that the special transportation bus is for iep kids only, not 504 kids (Her best friend has a 504 for anxiety and rides the bus so i know they are misinformed but when i mentioned other 504 children ride special transportation i was told none do.)
After researching online i found that 504 children can ride this bus if their disability causes it to be needed. Its federally paid for. They then told me she didnt need a 504 plan in place because her teacher is willing to do the snacks without a 504 anyway. They still stood by their decision that the bus would end as soon as the iep meeting of dismissal was held in 2 weeks.

Tomorrow i have a meeting with the district health and 504 specialist. Guidance asked that we meet with her to discuss this because it was not productive between me and guidance. So my game plan is to go in and explain that i want my daughter on a 504. Explain that a 504 qualified disability is any physical or mental impairment that is a substantial limitation of a major life function and that my daughter has been through so much with her sensory issues, how limited her menu is, how her weight hasnt moved in 5 months, how she is in ot and she has to go for weigh ins at a state food aversion clinic ect. Also how the snacks in class allow her a sensory break so that she does not feel overwhelmed and how the quiet small setting and aid helping her on the bus is needed because her sensory issues are worst when she wakes and she needs the aid for when her balance or legs are weak so she doesn't fall on the steps of the bus. She cant brush her teeth or eat breakfast at home or at school and her 9am snack is her first meal of the day and i worry and her ot worries the loud crowd on the bus would make her even worse in the mornings. Anyways, i was wondering if anyone has tried to get a 504 in place at school for a child with good grades, who can manage her symptoms with accommodations in place? It feels like they put the bus in place, the snacks and meals in place and as soon as she starts doing well they want to take away all legal rights to ensuring these things continue.. And i really want to fight for spd and make it known that its real, its serious, it can be a qualifying medical disability, a child can starve themselves to death or into a crashed immune system, among a million other things it seems like, this isnt minor or fake. She has other sensory issues as well but im unsure if they are "substantially limited" But her smell senses have her so anxious of bathrooms she wont go potty at school and sometimes pees herself at home or at school (rarely) and causes constipation. OT is very actively working with this issue at the moment, but its still an issue.
Any advice for this meeting tomorrow?

5. SPD doesn't run your life! What are you or your child's gifts? Interests? - She loves to dance and sing, shes excellent at drawing, shes amazing at putting together lego sets, she can spell tons of words and shes a perfectionist. Shes very silly and funny and she loves to make people laugh. She has a huge heart and loves other kids.
6. What do you like to do in your spare time? Any hobbies or interests? -
I like to crochet, watch movies, listen to music, i love fish tanks and aquariums, gardening, and ive been dieting for the last 5 months and i really enjoy finding and making low fat foods.

(Thank you to Dan for his quick reply to my email hoping to join this group. Im glad to have found you all!)