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Multiple issues with 8 yr old daughter, where do I start?- update at the end

post #1 of 12
Thread Starter 

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
post #2 of 12

Wow!  Sounds like a lot going on!  It sounds like you have a pretty good grip on what might be going on and now you need some professionals to weigh in.  Does she have a good cochlear team at the children's hospital that could direct you to the correct professionals?  I would think a complete Occupational Therapy evaluation would be be a good step as well as a neuropsychological assessment to look at her learning and cognitive functions.  This will tease out the reading issues as well and hopefully the motor issues.  

With that information you could see a developmental pediatrician to put all the information together.  So, yes, lots of money.  I am not sure where you're located.  One avenue to pursue would be to request a comprehensive evaluation from your local school district-and since she's deaf you could request and Independent Educational Evaluation at the school districts expense because it is likely their team is not qualified to assess her with her hearing issues.  That process would cost you time and patience but likely not money.  I know you are homeschooling but they are still responsible for her evaluations.

post #3 of 12
Thread Starter 

Thanks so much for your reply and very helpful suggestions.  I had not considered getting an evaluation thru the school system.  That might be the only affordable route for us at this point.  We are so new here that we have not chosen a family doctor yet and I have yet to figure out how our new insurance works.  Please excuse all of my typos in my original post- I am blushing.  I really am a better speller but am sleep deprived.  Well, I am sure here many understand. Thanks again for your support.  You have helped me articulate better what I am asking for- thank you!

post #4 of 12
Thread Starter 

I have another question for anyone who has been through this before.  If I wanted to go the route of starting with food allergy testing, how to I go about asking the right questions to get the right testing?  We are willing to make dietary changes.  We are vegetarian/wannabe vegans but have occasional slip-ups with dairy.  Okay, lately there have been lots of slip ups out of convenience.  Sometimes life gets too hard and I fall back on old habits.  I can get us dairy-free again with a bit of effort.  We have never gone completely gluten-free or sugar-free but are willing to try.  I try to keep sugar to a minimum but I will be honest that we are not perfect.  Also, what kinds of things might she be lacking in terms of vitamins/minerals/etc and how does this affect behavior and how do I make sure we get the right testing done?  Maybe I am looking for what kinds of questions are the right ones to ask?  Or does someone have a really good online resource or book suggestion for learning more about food allergies and mood?  I am hopeful that we could address some of her mood issues with diet.  The balance stuff and reading issues will likely require outside intervention but if I could just get to a place of being more peaceful then everything else might not be so hard to deal with. 

post #5 of 12

First, hug2.gif

 

I think it sounds like your DD has some complex issues. This is what I'm seeing (I'll reorder your post and insert my comments):

 

 

<<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. >>

 

<<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.>>

 

I don't understand how these two statements work together. How much does she hear? How much of her outburst do you believe are related to her hearing problems?  How are you currently handling the outbursts?

 

<<  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. >>

 

Does she seem to experience pain normally, because it sounds like she would be in pain a great deal of the time? Does she notice what other kids are doing, like biking and such, and want to join in? Does she join in play with children outside your family?

 

<<She avoids many textures of foods and fabric.  No velvet or stryofoam, please! >>

 

I suspect that she has sensory issues (among other issues). I suggest reading "The Out of Sync Child" by Kranowitz. My DD has intense sensory issues and when not appropriately addressed, they can look like explosive moods and defiance, but they aren't. I suspect that addressing sensory issues for your DD may be more important that addressing diet.

 

<<On top of all of this, she is struggling with reading.  She is very bright and has an unbelieveable vocabulary.>>

 

How long has she been able to hear well? How are her phonetic awareness skills -- things like rhyming words, being able to tell if two words start with the same sound, etc? 

How are her writing and other fine motor skills?

 

Some advice based on my experiences -- I gentle suggest that you reconsider if continuing homeschooling is the best option at this time. If she were in school, she would be eligible for educational testing, reading help, physical therapy, adaptive PE, etc. It would also mean that someone else would be working with her to help her develop appropriate social skills.

 

It would also get your kids way from each other for a big chunk of the day, which might be really good for their relationship. (My kids became closer when we stopped homeschooling because they were no longer sick of each other).

 

It would take a lot of the burden off you because she would have a TEAM of people to help her, and you would get real breaks.

 

<<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".>>

 

 

There are TONS of therapies and techniques that are not medication -- TONS. Please don't let a fear of medication keep you from getting to the core of what is going on for your DD.

 

At the same time, some children really do much better and are far happier with life and with themselves on some types of medication. Its not an option I would completely rule out without finding out what is going on with her, even though I believe there are a lot of things to try first.

 

I have a 16 year old DD with Autism. She knows she is on the autism spectrum and she feels really good about herself. She knows she isn't "normal", but feels that normal is highly overrated.  orngtongue.gif  In the end, your DD is going to figure out that she is different. If you don't find out the right words for how she is different and help her become the best version of herself, she will make up her own words for how she is different, such as stupid, crazy, etc.

 

I honestly believe that figuring out what is really going on with our special kids and being HONEST with them is the first step in them making peace with exactly who they are.

 

Suggestions:

 

If you can go the private doctor route, I would suggest getting a "full neuro psychological evaluation." Please check into this carefully with your insurance because not all insurances cover them, and some cover them only under certain circumstances. They are very expensive out of pocket.

 

If your insurance will pay for therapy, I suggest Occupational Therapy to address sensory issues, and physical therapy to address gross motor issues, including walking.

 

If the private doctor / insurance option does not work out for you, please check into your public schools as well as any government insurance programs in your state for children.

 

goodvibes.gif  I'm sending you good thoughts. I've been in a similar (but not exactly the same) position and it was very difficult for me. We got through that difficult time and found the right people to help my DD and she is doing GREAT now. Although this is a scary tunnel, there really is a light at the end of the tunnel. There is so much reason to hope, and so many wonderful people you will meet who will be able to help your DD in different ways. You really don't have to do this alone.

post #6 of 12
Thread Starter 

Thank you so much, Linda, for your reply.  You have been very helpful and I really appreciate the time you took to write all of that out. 

 

>I don't understand how these two statements work together. How much does she hear? How much of her outburst do you believe are related to her hearing problems?  How are you currently handling the outbursts?<

 

Sorry, let me clear up what meant about her hearing loss and speech and language abilities.  She has excellent command of the English language. I think she might have a better vocabulary than I do since she listens frequently to children's literature from the turn of the 20th century on her MP3 player that is hooked directly to her cochlear implant (thank goodness for Librivox!).  She is always peppering her sentences with words and phrases she hears in her stories and she uses them correctly.  She hears quite well, under controlled circumstances (meaning minimal background noises and rooms with low ceilings and carpeted floors). But it is a hard thing to maintain that level of perfect hearing for her in real life.  Not to mention our new home has vaulted ceilings and tile floors (long story about why we live in this house but we just had to take what we could get).  She recognizes that she does not hear everything that is said around her and it frustrates her to no end.  We know other children with hearing loss who are either not aware they are missing things that are said or they do not seem to care.  My daughter really cares and it is her obsession to be sure that she hears every word spoken around her.  She says she becomes physically sick to her stomach if she does not hear all of something that was said near her and she will not be satisfied until it is repeated back to her exactly as it was originally spoken.  This can be quite taxing on everyone's patience but I try my hardest to be as patient as I can.  I don't know if I am consistent about how I handle the outbursts.  I think it all depends on how worn down I am.  For the most part, I try to begin by making sure she completely understands what everyone has said.  I usually take her to a quiet room so that we can be sure she has a chance to share her side of the conflict.  I then go and talk to my older daughter privately so I can hear her side.  I try so hard to mediate.  It does not always work and it can be exhausting.  I guess I just try to separate them until things calm down and try to come up with a plan for how to handle things better next time. 

 

As far as how much of her outbursts are related to misunderstandings or frustration that she did not hear everything that has been said, I would say 50%.  The other 50% are just with everyday things that she is frustrated with in general.  She does not like to leave home (probably b/c she has less control over her hearing). When we go places, she can make it pretty unpleasant so we often give up and go home.  If I can keep her engaged by playing a verbal word game with her, then we can make it to the store and back home in relatively good condition.  Any more than one stop is just not doable right now.  And just everyday frustrations with her sister- she is very, very jealous of her sister.  I try my hardest to make things feel fair to everyone but it is not working.

 

<Does she seem to experience pain normally, because it sounds like she would be in pain a great deal of the time? Does she notice what other kids are doing, like biking and such, and want to join in? Does she join in play with children outside your family?<

 

As a toddler, she did not react much to pain at all.  I remember her being bitten by fire ants and just grunting about it and moving on.  She does cry when she seems to be deeply hurt but she does not seem to react much to all the bruises on her shins and her hips.  I think she must be so used to it that she does not notice anymore.  She does notice other kids biking, particularly her sister, and she would love more than anything than to join her.  We recently moved to a place with a tremendous population of seniors and you can often see them riding large tricycles.  I have thought that would be a good choice for her.  The expense is part of the problem and also I worry about her planning skills.  I am not sure if she would be able stop in time for roads or other people.  She will play with other children, although it takes her some time to warm up.  A bad experience with another child in our previous town kind of scared her off from letting others get close.  We have not had many opportunities in our new town to meet other kids yet (did I mention that there are a lot of seniors here- it is amazing!) but I am working on it.  It is really hard to open yourself up to the world when your home life feels so out-of-sorts.

 

<How long has she been able to hear well? How are her phonetic awareness skills -- things like rhyming words, being able to tell if two words start with the same sound, etc? How are her writing and other fine motor skills?>

 

We discovered her hearing loss when she was 2.  It may be that she was able to hear better early on and then her hearing must have become progressively worse.  I have no other explanation for why she was able to pick up so quickly on all that she missed as soon as she got her cochlear implant and hearing aid.  Her phonetic awareness is fair to good.  She has a hard time distinguishing which vowel is in a word.  She is great at rhyming, decent at telling which words start with the same sound.  She has a really hard time distinguishing  "d", "b" when trying to sound out a word and she also confuses and '"p" and "g" and "q".  Her writing is good and she cuts the tiniest paper dolls beautifully.  But yet she is a really messy eater so I don't know what the deal is with her fine motor skills. 

 

 

 

I hear what you are saying about homeschooling.  It is painful to hear but I am open to it.  I had such an idealized idea what it would be like to have kids and what homeschooling would be like.  I realize that my reality is not matching up to my hopes and dreams and I probably need to make some adjustments.  I may have to sit with that idea a little longer before I act on it but I thank you for sharing your experience and your thoughts.  They are very helpful to hear.   It is hard to know what to ask for when you don't know what you are talking about, haha, so now I feel like I can go to appointments and ask the right questions.  Thanks so much for all of your suggestions.

post #7 of 12
In one of your posts you brought up the possibility of food related issues. There are many foods that cause issues for people, but the ear problems make me think corn is a possibility. I had wheezing, ringing in the ears, and vertigo before giving up conventional corn. It hides in ground spices, salt, baking powder and sugar, so it is difficult to eliminate. Still, the results were huge for me. Being unable to sleep can be caused by an adrenaline response. Identifying and eliminating foods that cause the response would make sleep possible.

Sugar is a problem for my son. He finds it difficult to control his temper when he has sugar, because he's on the verge of a migraine.

Cherry juice has been shown to aid sleep, and concord grape juice has good nutrients, too.

I hope you can try some of these suggestions, and that they help. They can be done while you are pursuing another course of action (though then it's difficult to determine which results in improvement, if there is improvement), if you want to do that. Whatever you do, I wish your whole family well.
post #8 of 12

I, too, think you should possibly get an evaluation through the schools. It is cost-free and they would have good insight on your DDs behavior- especially since you can get the Hearing Specialists in to help. You also would have an OT, PT, speech, social/emotional, and cognitive baseline to help you build a framework to help your DD. An eval does not mean you have to stop homeschooling-- but they may have some school based programs that are worth exploring, or she could go 1/2 time, or she could get services that fit her needs and still do some homeschooling. There is often (though not always) a lot of different ways to match students to programs and services.

 

A few other thoughts:

 

1. Some of your DD behaviors sound very controlling. At 8, most kids can handle a few errands and/or a chunk of time at the store. They may not like it, but they have developed the maturity (under ideal circumstances- not hungry, tired, etc) to know the reasoning behind it. ALso, the insatiable anger at not hearing everything and having repeated conversations a bit of a anxiety response or a controlling response (gets your undivided attention). It would be hard to tease  out differences without witnessing it. Also, the jealousy with the sister sounds beyond standard sibling angst.

 

Your DD may really benefit from some work with a social worker or school psychologist on a few things: her ability to handle her hearing loss, her relationship with her sister, her tolerance to participate in errands/outside the home activities, her anxiety about her environment, her eating habits/ obsessions, and her sleep habits.

 

2. I also would find a good speech therapist. It could be privately or through the schools. An outsider helping her work through her anxiety about 'hearing' and also could make sure that she has some coping skills for when she feels she is 'missing' conversations. A firm sense of control for her might be something that spills over into a lessening of other behaviors.

 

3. Have you gotten involved in the local Deaf community? Your DD may benefit from meeting other kids that have cochlear implants. I know that sometimes a medical concern can feel very isolating to kids and it can help to meet other kids that may be dealing with similar issues. She could help build some social skills outside of your home and also make some age peer relationships.

 

4. With a house that has vaulted ceilings-- have you thought to get an FM system in the house to help alleviate some of the background sounds? I know our kids classrooms use them often, and always when there are kids that have hearing concerns.

 

5. Some support for you , your other kids, and your spouse. IT is likely you could find some respite programs for an afternoon and/or a night out. They could work with your DD and give her some personal time and the other members of the family can also enjoy some space. You and your spouse need to make sure that you are working as a team as well.

 

6. Does your DD have a set routine? A set daily schedule or picture routine may help  her feel more in control and also led to less anger at what is going on.

 

7. Have you done a sleep study to see whey she sleeps so little? Sometimes ears can affect sleeping patterns. A good sleep study may reveal she has sleep apnea and/or other concerns that are preventing her form keeping a regular sleep schedule.  Making sure she is getting the sleep she needs may also led to a decrease in anger and/or a greater tolerance for change.

 

8. Have you tried any outside remedial assistance for reading? Sometimes, with an outsider, there are less power struggles than with a parent. The role of 'instructor' are clearly defined. If you do choose to use outside tutoring or teaching for reading- make sure that your DD understands that it is to help her read better: not that something is 'wrong' with her. A program like orten-gillingham or another set format may help her make some gains in reading and gain some confidence.

 

9. Does your DD have a set medical team? I know that it is possible her cochlear implant may need tweeking over the years. It also is important to have a medical team that has a wealth of resources, support staff, connections, and ideas to help. A local Childrens Hospital is a good starting place. They are well-worth the drive and often have a clinic format for medical needs like your DD.

 

It really sounds like you have a lot going on and it would be good to have a plan in place so it does not feel so 'tornado-like'. A set of goals and clear path will help your DD, you, and your family in supporting your DD. You state you are worried about medication---but there are so many things you can attempt before that even enters the conversation (if it does).

 

Do you have insurance? If so, you are also likely to be able to get a set amount of therapy  ( I am thinking PT for toe walking and OT for fine motor and speech) covered. It would be worth looking into coverage to see what help you can get for your DD. State insurance also covers therapies.

 

AS far as taking her siblings....well, a lot of parents do. It is not a big deal. We did it. One DD had OT and the other did not--- I took them both and it all worked out. Our OT office had a small playroom and there were always other kids to play with. Our local hospital has a sibling playroom for when sisters/brothers have appointments and parents need care for an hour or so-- it is free of charge. In the big picture, I would worry little on bringing siblings to appointments or sessions--- the trade off for support and therapy your DD needs greatly out weighs the fact of taking them all along.

 

*HUGS* I hope you make some phone calls to the local schools, a medical team, and your insurance. There is really a lot of great staff out there (OT, PT, speech, therapists, social workers, etc) that could really help you and your family. If you find someone does not mesh with your family philosophy- keep looking for another.

post #9 of 12

I highly recommend the Florida Elks Childrens' Therapy Services for sensory-based OT.  I think cleaning up the diet and even using natural house-cleaning products and eliminating plastic from the kitchen canbe very helpful.  I also understand hesitation to introduce medication, but after 5 years of trying alternatives, medication has proved to be just what my son needed.  Keep an open mind and best wishes!

post #10 of 12

My DD has many medical issues, and I found it very difficult to keep up with all her appointments and give DS what he needed, especially with school.  We opted to put him in public school, and let me focus on DD for that school year.  I was very concerned, but he did wonderfully.  He really enjoyed being around everyone else.  he also liked that I made all his sister appts while he was at school, so I had time devoted to him.  The teachers at the school were all given a synopsis of his sister's medical conditions, so they could relate to him and process any info that he gave him (i.e. his sister was 2, but could not talk, sit, etc).  They were very understanding.  My son really wanted to go back for 1st grade.  The teacher even sends the next weeks homework home with him on Friday, so we can get ahead on the weekend.

 

DD is in the school system, but is on homebound.  A teacher comes out once a week for an hour to work with her, but it also gives us access to OT, PT, Speech, Vision Therapy.  I know they have programs for the hearing impaired as well.  I would highly recommend enrolling your youngest in school, and asking immediately for Special Ed.  You can request homebound in writing.  Lots of schools do not like to do homebound, but I kept reiterating everything she would need at school, and they realized home was a better option for us.  That would at least get you started with some therapists.  

 

For medical issues/copays I would start by finding the pediatric group at your local children's hospital.  It might not be what you want long term, but they will be able to get you the correct referrals quickly.  You might also ask to speak with a social worker, as they will be able to help you with the financial aspect of the payments and let you know what programs you are eligible for (i.e. Medicaid, MDCP, etc).

 

I definitely understand your concerns with your 10 year olds responses/feelings toward her sibling.  At 10, maybe you should consider asking her what she wants, does she want to go to a traditional school, or continue to stay home.  Is there a group of homeschooling moms you could work with?  Now might not be the best time to enroll her, but if it is an option, you might let her know she could consider it for next year.  You can always pull her back out if she hates it.

post #11 of 12

 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.

 

Have you considered contacting the Hands and Voices department in your state? That might help, with the deaf issues and venting that you need to do. Or get an aupair, but those are expensive, so I doubt it. Is your husband involved with your decisions? If so, then great. If not, then you should start there. Does your child have extended daycare at her school? Many of them are until 5pm daily Mon-Fri, so you could ask, or get her involved in after school activities that are on the way to therapy- or ask the therapist to involve her in helping her sister, i.e. games, etc.

 


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.  

 

It most likely could be EVAS, or extreme Sensory Integration Disorder. And she should not be allowed to ride a bike! My child is deaf with a CI, so I get how you feel. I've heard that implants can  throw off a person's balance, you might want to ask your audiologist about that.

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.

 

It sounds like Sensory Integration Disorder with possible autism? I was thinking maybe ADD but the eyes thing is not normal. I'd definitely get her checked by a professional, preferably one who understands deafness. The sleep thing I really wouldn't worry about if it isn't that intrusive or disastrous- but I would definitely suggest rocking her or letting her watch movies or read books in bed until she falls asleep. My child was the same way, always really restless and not a great sleeper. She was fine if it was completely silent and dark, but otherwise she couldn't handle it. Maybe try to find an activity that exhausts her completely before bed, or a reward system so she stays in her bed at least.


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!

 

It sounds like OCD for sure. the last three sentences make me think she might have SID, but you probably would want to investigate more. 

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.

 

Do you sign with her? That really makes a difference. the temper's probably due to overstimulation, but that's common in many conditions. The deafness can be attributed to her immaturity, but could you elaborate about what you mean by emotionally delayed?

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. 

 

Possibly dyslexia? But I'm not going to guess. However, LD's are common among deaf people. Maybe you can ask the school for a reading specialist to help her? And focus on her art, honestly. Maybe make art around reading? You can get some ideas from Waldorf/Reggio Emilia education, or a therapy school.

 

post #12 of 12
Thread Starter 

I thought I would update this thread with new information.  It turns out that my daughter has Type 1 Diabetes.  She was diagnosed a month ago.  This explains the explosive temper.  She has also stopped hoarding paper.  Makes my eyes teary writing this that it took this long to figure it out but the symptoms of excessive thirst and urinating did not come until the very end.  She is going to be okay, although Type 1 diabetes is no picnic.  She is also starting to read!  Thanks again to everyone for your thoughtful replies.  Thank you Nerdmomma, for your very thoughtful and helpful reply.  

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