I haven't posted in a while. Though, I have always felt great support from this forum. Right now I am at my whits end with my DD. She is 5 years old and was disgnosed with SPD last fall. She went through 6 weeks of OT, which was fine (not great). The OT said she felt she couldn't help us. My DD is a dumper and tends to let everything go once we are home, which I'm fine with but it can be quite exhausting.
My biggest concern is the crying and fatigue. She probably cries anywhere from 5-10 times a day. I'm not talking about whining. She cries with real tears. I was a very emotional child but my mom says I wasn't nearly this emotional. It is exhausting to me. Sometimes her crying seems so irrational and I just don't know how to handle it. I feel like I'm constantly consoling her. I do not see her friends being like this. They seem more emotionally mature. On the other hand she seems cognitively ahead of her friends. So, I'm wondering if this is why she's delayed emotionally? Some of her motor skills are delayed too. Not largely delayed. Just a little bit behind.
DD is so fatigued all of the time. She has energy at certain parts of her day but mostly seems weak and exhausted. She will sleep forever. This morning she slept until 10:00am ( & woke up crying). She claimed that "Mommy should have woken me up". DD also has loose stools. We realized that she is lactose intolerant about 6 months ago. Yet, her stools are still loose (just not green anymore!). It varies in color from orange to really light brown and sometimes has a white casing. In the 5 years of her life she has never had a BM that seems "normal". She was tested for celiac but the test came back negative. I myself am gluten free. I tested negative for celiac too but my fatigue and rashes disappeared after going GF. Her pedi said I could still try GF and see if she feels better.
Third, DD falls a lot. She has way to many "accidents". I hold my breath when she runs because it almost all turns into falling. She tip-toe walks throughout the day. She walks flat-footed sometimes, especially when wearing shoes. But I wonder if the falling is from tip toes. She also has poor balance.
Anyways, after writing all that, I really just want to know how to survive the day. I want to feel happy about our days and not negative. Oddly, I feel like some months go by and they are so easy & then a change in routine causes her to "regress" ( i know i shouldn't use that word). Every day I'm exhausted by it and feel defeated. I find myself saying in my head, "It's not fair" "Why me?".
Any support is welcomed!
My dd (NT) seemed to whine and cry constantly at 4/5yo; it reduced greatly once she was in school and has returned again since school has ended. She also trips/falls a lot but that doesn't seem to be unusual at this age; it's not as often as it used to be though. She will often complain about being tired but that seems (for her) to be another word for bored. If there is something interesting to do (a neighbor to play with or a trip to the pool) she is suddenly energetic. My dd does need more sleep than my ds at that age (11-12 hours) and frequently falls asleep in the car, but she nearly always gets up between 7-8am, depending on when she went to bed. My SN (ADHD, Aspgerger's) ds did seemingly purposefully trip and fall for the sensory input and because he thought it was funny. My ds is also behind emotionally while ahead cognitively.
There are a lot of things that can cause excessive fatigue (ex. electrolyte imbalance, thyroid disorder, anemia, insufficient quality of sleep, metabolic disease, nutritional deficiency) and I think it deserves more attention than her Dr. is giving it. I've also read that a person can be "sensitive" to something like gluten without having Celiac disease. The lack of (ever) having normal stools seems to me to be an indication that something isn't operating correctly; determining what, exactly, appears to be beyond your regular ped. and I would look into a specialist.
First thing I would do is find another OT that specializes in SPD. My son has been in OT once a week for the last year, and we are not anywhere near done. He has had a setback recently also, and we have had to start from scratch again. Also, have you read "The Out of Sync Child"? This book explains everything about SPD and is considered the "bible" of SPD.
Most days I am too exhausted to do anymore than just take care of my kids, let alone cook, clean, and relax. Hang in there mama, there is hope:)
Routine, routine, routine! This has helped us out so much. Also, frontloading...especially if there is going to be a change in the schedule. The day before, start going over what you are going to be doing the next day and especially before bed. Also, visual shcedules with pictures and words. I have a big poster board with our typical daily schedule, with pictures and times that we will do things, at a childs eye level. This way my son will be able to know what time is lunch, playtime, betime and so on. I also have a big white board with what is going to be going on that day, especailly with things that are out of the ordainary.
My son has "regressed" before. I know exactly how you feel. It is one of the worst feelings for a mom. But I do think it is a coping mechanism for our kids. You will get there and so will you DD. Just hang in there. Also, I can not stress enough about finding a new OT. This will be great for you and your DD.