I am looking for advice as to how to even begin to deal with the multiple issues my 8 yr old daughter is facing. After a night with her sleeping less than 2 hours, I am at my wit's end. There are so many possible diagnoses swirling around in my head- OCD, SPD, dyspraxia, bi-polar, things from The Explosive Child by Dr. Greene ring true....I would really appreciate advice as to how to proceed.
Some background info: We are a homeschooling family and are on a limited budget with crappy insurance. This is why I have not really sought much medical help at this point. I am willing to figure out how to fit co-pays, etc. into our tight budget but have been afraid to proceed. My worries are that medication will be the only option and I am not willing to medicate her at this time. I also worry about how my daughter might internalize all of the focus on her and that she might see herself as "bad" or "not normal". In addition to this, we just moved to a new place a month ago (which has made all of her issues so much worse) and I have no friends or family to rely on for help with appointments. My husband works hard so that we can be home and he is just not able to help me with appointments. My other daughter, who is a typically developing 10 year old, would have to go along to appointments as well. Maybe I have not done the right thing by trying to deal with this all on my own. I thought if I gave her enough time, she would grow out of some of it but instead, things are getting worse.
My daughter is deaf and hears with a cochlear implant and hearing aid. She thankfully does not have any issues to speak of with speech and language. I do not know if her hearing loss is tied in with everything but I have not found any connection so far. Her hearing loss is a result of a recessive genetic condition called Enlarged Vestibular Aqueduct Syndrome. It can cause vertigo and issues with balance. She is always covered in bruises from slamming into things. Not sure if this is due to the EVAS or from SPD or dyspraxia or what. She is a toe walker and has to wear shoes that are styled like ballet slippers in order for them to stay on her feet. She walks very hard on those toes. She is not able to ride a bike because she has no sense of balance. I am not sure I would want her on a bike because she is not great at planning ahead, if that makes sense.
She has had sleep issues since the night she was born. I had to cover the clock on our DVD player the night she was born because that was the only light and the room and she could not stop starting at it. I told our family doctor the next day when he came to check her out that I thought that there was something wrong with her. There was something about the way her eyes darted all around that made me worried. I'd had a beautiful bonding experience with my oldest daughter, she just stared into my eyes moments after birth. I had expected the same with daughter #2 but it was nothing like that. It was like she was born out-of-sorts. She was impossible to soothe as an infant and sometimes the only way to keep her from crying was to nurse her in a completely dark room for hours on end (kind of hard to pull off with a 2 year old running around). So from the very start, she has been a challenge. It is hard to explain, but even as an infant, she had a swirly, frenetic energy about her. To help her sleep at night, I have been giving her melatonin (half mg) since she 3 out of desperation. She cannot fall asleep without it. Last night, she truly only slept about an hour and a half. She was up all night crafting and playing board games by herself. I checked on her every so often and she was okay. I have long since given up on trying to force her bed- it does not work.
She obsessively hoards scraps of paper in her room and pieces of lint. I think she may believe that they are alive and that she is saving them from being thrown away. She has a fear of germs and feet. She wipes her bottom lip constantly to get the "germs" off. She washes her hands a lot and will not touch them with a towel to dry off because towels are "dirty". She is very impulsive and rarely thinks before she acts. She avoids many textures of foods and fabric. No velvet or stryofoam, please!
She has an explosive temper and there are lots of misunderstandings (this is surely due to her hearing loss). She realizes that she misses a good part of what is being said sometimes and it makes her really angry. The explosive temper is there whether or not there has been a good night of sleep. She is very mature in some ways but then she seems emotionally delayed in others. She recently stopped wetting the bed on a nightly basis and now it only happens once a week or less. A small victory and one I am really happy about.
On top of all of this, she is struggling with reading. She is very bright and has an unbelieveable vocabulary. She is very artistic and very focused when she is doing her art. Math comes very easily to her. But I worry about how to get her where she should be with reading.
I don't know what to think or where to start. She has a 10 year old big sister who does not want to be around her anymore- phew, what kind of therapy is she going to need to sort through all of this. The explosive temper is really tearing them apart. Not to mention the stress this causes on a marriage. Or the fact that I feel kind of lost in this tornado and secretly wonder what did I do wrong? I know that this is not my fault but it sure is hard sometimes. If anyone has any advice for me, I would really appreciate it. How do you navigate through the medical system? How do you find medical professionals who are willing to work with you?
Edited by crankpotgirls - 10/7/13 at 1:18pm