Back again. With some answers. A few, at least. :) And a suggestion for parents!

Discussion in 'General Parenting' started by OrganizedChaos, Oct 30, 2011.

  1. OrganizedChaos

    OrganizedChaos New Member

    It seems like forever since I posted here before. To remind everyone, I have an adopted son (had him since he was 3 days old) who is now 4 that is hearing impaired and his doctor had already said he was ADHD (which we agree with). Lots of behavioral problems and just some odd little quirks. For so long they told us it was all due to his lack of hearing, even though we knew it wasn't. He didn't sleep properly and ADHD medications did help, for the most part, but once they wore off or in the mornings times with him were ROUGH. And we couldn't take him anywhere without meltdowns, particularly when shopping, etc. I finally pushed enough that we got a referral to a psychologist/psychiatrist. The psychologist spent a lot of time just observing him and pointing out different things. We now have a diagnosis of Aspergers and ADHD. I've been asking about Autism since he was 2 but every doctor I brought it up to said no. Researching Aspergers further, I can definitely see it. A lot of it was subtle but it's there. There are definitely sensory issues as well. We're on a waiting list for a neuropsychologist at the university hospital where we live. So, I think there is more to come. This poor kid. :(

    Meanwhile, his doctor FINALLY listened to me about his not sleeping (we're all exhausted, dammit! Listen!) and ordered a sleep study. Come to find out he's got Obstructive Sleep Apnea. He doesn't snore or appear to have other issues when sleeping, just wakes up a LOT, so it wasn't even a thought in my mind, honestly. They've recommended that he have his tonsils and adenoids removed. The reason I believe this is prudent to post here, is because lack of sleep at most can CAUSE a lot of these issues that he has and at least it will exacerbate what he already has going on. If your little one has trouble in the sleep department, a sleep study (it's just an overnight) might be worth checking into.

    My thoughts are really all over with this. I feel like maybe we're getting somewhere and yet I've felt that way often over the last 2.5 years and every time we got smacked back because it wasn't "it". It's hard to be hopeful sometimes, I guess is the best way to put it. Especially when we still haven't found the right thing to reach him/help the really bad behaviors. And then we have a day like today where he was absolutely AWFUL (and, as an aside, yawning all day long with bags under his eyes) and I wonder how much more we can take of this. I've cried a lot. I'm angry. I'm heartbroken for this beautiful little boy because he's so bright and I know he could be amazing if we could find the right way. The psychiatrist gave us a new medication (Adderall) that didn't change anything over the way he acted on the previous medication (Vyvanse) and Vyvanse is easier to give to him because it's powder and we have HUGE issues over food to begin with and it's a fight EVERY DAY to give them to him. At least the Vyvanse we can hide in stuff. Then he said for anything further to see a neurologist or our primary. Well, thanks for all that in-depth knowledge that we came to you for. So we got ourselves aligned with the Autism support group of our area (I have my first meeting Tuesday night) and there's another foundation here that can help with kids like him so I'm calling them tomorrow. And waiting for the neuropsychologist so we can get to the bottom of the sensory issues. Above everything else, I'm so frustrated I could just scream. Over dealing with him and all these doctors and more and more things just piled on top of one another. I have an extremely unsupportive family but very supportive friends so thank goodness for them.

    The psychiatrist kept going on and on about Bipolar but my son doesn't match the criteria aside from his little rages and those can be attributed to both Aspergers and ADHD - not to mention the lack of hearing and now the sleep problem. He just kept going on and on about it when I've read and his primary doctor has said that, at this age, he's too young to diagnose unless he just fit a ton of the categories and he fits none. So, we've moved on from them.

    I also got the book the Explosive Child and am reading that. So that's our update for now. I hope to be able to be more active here than I have been; we recently just moved (my son has done great with the move! We came to the house several times before the actual move and talked about it and let him help us pack. It made the transition easier because he has a really rough time with transitions) and everything has been crazy! This board is an awesome support for people looking for help. If only because we all KNOW what everyone else is going through. Thank you for being here. :)
  2. OrganizedChaos

    OrganizedChaos New Member

    Also (there's so much to remember and my brain just doesn't retain it all at once! ;)), it's appearing more and more that he's got a sensory issue to noise. When he wears his hearing aids (and he's had them since February) he just sits quietly. His doctor said he's listening and that made sense. But it doesn't change, he doesn't DO anything. Even at school he doesn't participate. Remove the hearing aids and he's a normal little boy, participating, jabbering, trying to count, being bossy (lol), etc. We're not sure what to make of this. I put a call in to the university hospital where they handle his hearing to get their input and we're relying more on sign (which is what he responds to the best anyway, and always has). And when he's not sitting and withdrawing with them, he's taking them out and throwing them. So we now have an appointment with a school for deaf children on Wednesday. Since he doesn't appear to be gaining any ground in his current school, we're going to try this avenue. Something, somewhere, has to help him.
  3. buddy

    buddy New Member

    Great update. poor baby. I have worked most of my career as an Speech Language Pathologist (SLP) with Deaf/HH kids. In the most recent years I finally was able to push the school for the deaf to use more appropriate autism methods along with d/hh school. Both the preschool teacher and I were moms of kids with autism and we kept hearing...oh we dont want to label them too young. WELL, I get the politcal reasons for that (so many d/hh kids in past have been wrongly diagnosed MR/daughter etc....) but IF it IS autism, it is critical to have early intervention. So good for you! Trusting your gut and pushing for the right answers. Heck, so many kids with Aspergers/High functioning Autism/Pervasive Developmental Disorder (PDD)-not otherwise specified are not identified till MUCH older and then suffer from labels that are so wrong like ODD, conduct problems, bad kid, etc.

    This is EXACTLY what happened with my girlfriends son...he has seizures and no sleep for years and years. (he is 12 now) turns out his oxygen levels were going into the low 70's as soon as he laid down. He just got surgery two weeks ago. He is still on O2 every night. HE normally can't handle wind on his face at all but he is accepting the oxygen thank heaven. Yet to see if the surgery is going to heal and effect a real change. I will let you know what she says as time goes on if you remind me to ask.

    you are really on a roll. I hope things turn around for you. Just having oxygen and uninterrupted sleep can make a huge difference for him. Congrats and hope things start a huge upswing for you and for difficult child of course.
  4. soapbox

    soapbox Member

    The challenge is - there are so many possible causes for sleep problems. And a sleep study doesn't even begin to capture a fair portion of these... it does well at capturing known medical issues (sleep apnea, restless leg, low O, etc.)

    But yes... given that sleep deprivation is a known torture technique... what is life like for a kid who isn't getting the sleep they need?!

    Some of the other causes of sleep issues that we're aware of (others will know more...) include:
    - sensory issues (anything from noise to light to the kind of sheets on the bed or the smell of the pillow...)
    - brain chemical imbalances (multiple causes... multiple solutions... some don't really have solutions)
    - poor sleep habits... tough one, because sleep issues cause poor sleep habits, too... but sometimes, just enforcing good sleep habits helps.
    - extreme fatigue - if you are way too tired, it makes it difficult to get quality sleep when you do get sleep at all... hard to break the cycle...
  5. Liahona

    Liahona Guest

    Wow, that is a lot to process for you. When is his surgery? I hope its soon. And I hope it helps lots. Are you going to do another sleep study afterwards to see if it helped?

    Its the OTs that evaluate for sensory. The neuropsychs evaluate for how the child thinks. What learning problems there are and processing problems ect... OTs are much easier to get into than neuropsychs. (most of the time)

    With all this info it sounds very hopeful! I know what it feels like to see things start going up and yet to be leery of hoping. You don't want to get let down again.
  6. OrganizedChaos

    OrganizedChaos New Member

    Thank you, Buddy! I'm so so worried that he'll need to wear some sort of c-pap machine while sleeping. There's no way he'd allow that, he can't stand things on his face or hands (sensory, I'm assuming?). He won't wear hats, scarves or mittens/gloves! We can only get him to wear shoes and socks outside (not in the car, just OUTSIDE lol). His oxygen was dipping into the 80's. So HOPEFULLY the surgery will take care of it. In the 5ish hours he slept he had 37 episodes of him waking. He didn't always come fully awake during those times but it was noted by the test. If I was waking up that much I don't think I'd even be able to get out of bed in the morning! ;)

    Thank you again. We're trying to push forward. I've done a lot of hard things in my life. The hardest thing I've ever had to do is be this child's advocate. So many people think they know more than us parents because they went to school. I concede that on a medical field they know more than me but they don't spend all day every day with my son. I WISH all doctors would understand that and remember it. I wish it wasn't so difficult to get the help we need. I wish they wouldn't be like, "well, he has Aspergers. Okay, well, have a nice day!" No. Tell me what to do, where to go, who to see! You can't just give a diagnosis and send us out the door! Argh!!! I could go on all night about how I feel about that one...And I need to go to bed, not get my dander up. More phone calls to make in the morning. ;)
  7. OrganizedChaos

    OrganizedChaos New Member

    I agree! If this doesn't help things, we'll move on to more. Some of what you list (and I could be wrong, I'm extremely new to this!) seems like it'd be trial and error. Like, trying new/different sheets or a new pillow. He already has light-blocking curtains and a good, solid bedtime routine that we try very hard to stick to. The extreme fatigue I understand - when I'm so exhausted I'm yawning constantly and my eyes are watering I often have a really difficult time falling asleep. Poor kid; I know I'm tired from his few wake ups where he comes awake enough to cry, I can't imagine how tired he is! I hope this helps. Thank you for the list, I hadn't even thought about sheets and pillows. Always looking for more in-depth reasons! :)
  8. OrganizedChaos

    OrganizedChaos New Member

    I don't have a surgery date yet. Had the sleep study last Wednesday and found out Friday. We're being referred tomorrow from the pediatrician (insurance demands referrals) to the ear, nose and throat doctor that did his PE tubes a couple of years ago. Yes, I'm going to ask for another sleep study because I want to know it worked instead of just wondering! :)

    We're trying to get him into an Occupational Therapist (OT). He has speech therapy but the insurance is fighting the Occupational Therapist (OT). Thank you for the correction about who diagnoses the sensory issues. ;)

    I'm cautiously hopeful. Eventually we will happen upon the right thing. I hope.
  9. soapbox

    soapbox Member

    Sleep and sensory issues... try what you can, ask what he thinks... could be the PJs, for example, rather than the sheets... or the shape of the pillow. Occupational Therapist (OT) can help sort through sensory stuff... but you have to get there first. Sheets... there's rough cotton (cheap sheets), high-end cotton, satin, flannel... and probably more (don't bother with silk... too expensive to just "try"!). There's also too hot, too cold, and "can't keep the blankets on". For this last one, you could try a sleeping bag instead... so the bedding rolls with the kid. Too dark - get a really dim night-light, as too much light is also a problem... some of the LED ones just give a bit of a glow - green or blue, most often that I've seen. It can be "too dark" and "too light" at the same time... as in, need light-blocking curtains because daylight is too strong, but blocking it all out is too dark, so...

    Yes, its a process. Keep trying every door you can!
  10. keista

    keista New Member

    WOW! You've made a lot of progress! Advocating for our kids IS the toughest thing in the world. Like you said, the professionals, don't really know our kids, and the few that do (teachers, school admin), don't seem to truly understand their issues.

  11. nvts

    nvts Active Member

    Well, you've been on the run! Well done Mom! Well Done! You need to take a moment to pat yourself on the stones unturned! I love it :)

  12. OrganizedChaos

    OrganizedChaos New Member

    Aww, thanks so much! Some days I just feel like I'm running in place! I'm EXCITED today, though! Last night I had my first Autism support group meeting. It's for people with newly diagnosed children. It was really nice talking with people and exchanging thoughts and ideas. I got some good ideas to try with my son. Unfortunately, he was horrid for my aunt (who babysits him for me) but I was running late and had to leave right away after she got here so I'm afraid I didn't give him enough transition time. I'll be more cognizant of that next time.

    And the best news! This morning we had our tour and meeting with the school for the deaf. Wow, we were IMPRESSED! The teacher he would have was beyond awesome. She was very receptive of his Aspergers and talking about ways they could give him little breaks during his day and what not if he was getting overwhelmed. She clearly knew her stuff. We observed during their story time and he sat in the circle with the other kids in the class. <3 She told the story using only sign and he was enthralled by it (we sign at home; his teacher at his school now does not - even though he responds better to it). I think this will be a good fit for him. I put forth the steps to set up the IEP with our district and their school to get it going to make the move. Hopefully my current district doesn't give us problems. The guy running the support group last night gave me some laws to look up about this stuff so I'm going to do that tonight. Knowledge is power and all that. :)

    Between last night and today I'm feeling a renewed sense of hope and determination. Sometimes I need that tank refilled. :) I will keep trying with the sensory issues. Going out tomorrow (hopefully. I have a pretty sore throat today. :() to buy some new sheets to try. And the appointment with the ENT is the 7th and we'll schedule surgery then.
  13. nvts

    nvts Active Member

    Again! You're awesome! Maybe you should have taken the screen name of "Rolling Stone" hahahaha! You're definately making headway Mom! And remember, we're right behind you - keep in mind that you can also check things out on the Special Education 101 forum - the ladies on there really know their stuff!

    Well done - you really need to be proud of yourself!

  14. buddy

    buddy New Member

    so great! I am glad you felt that support and got some ideas. Before I left to care for difficult child, I was a Speech Language Pathologist (SLP) at a school for the Deaf and it has been my favorite job. It was a bilingual/biculltural program...they use ASL? We were getting so many more kids with Autism Spectrum Disorders (ASD) and anoher teacher and I both had Autism Spectrum Disorders (ASD) kiddos so we loved helping them get up to speed working with kids on the spectrum. One cool thing for kids with Aspergers, if they are more visual in the first place, a school for the Deaf matches their processing and sometimes their sensory needs better. Of course not to mention the language input etc. I am biased because I have worked both settings and I see how kids soar when they have access to information visually all day long, and their English improves because their concept base increases, so you can explain English better. I hope you find it works well for your son. I really miss it. You are doing great. So cool to hear about your day.
  15. SRL

    SRL Active Member

    Good for you for doing your research, and continuing to push your doctors until you had reasonable answers.

    If you haven't read it, I'd recommend the book The-Out-of-Sync Child by Carol Kranowitz about sensory issues. You will definitely want to have a workup done by a pediatric occupational therapist with what you're seeing.