Long long road, still not full diagnosis on 4 year old boy...

Discussion in 'General Parenting' started by OrganizedChaos, Aug 21, 2011.

  1. OrganizedChaos

    OrganizedChaos New Member

    Good evening, folks. Another newbie here, found you by way of Googling. This not being my first time at the helm of a Google search, this is the first time your board has popped up and the first place I've found with people describing things like my son! First, before I launch into my story, I offer you all supportive hugs and wish you much happiness and patience with your little one. :)

    And here I am, almost at the end of my proverbial rope...My son is 4, he'll be 5 in the early spring. He is adopted and we've had him since he was 3 days old. I know his biological family (we are actually related) but all I know about her pregnancy was that she was 7 months along before it was found out. She insists that she never drank or did any sorts of drugs and I honestly have no idea as we live in different states. Ours is a semi-open adoption, we talk by telephone and I share pictures a couple of times a year. This was birth mother's choice. The last time we saw her my son was only a month old and it was to go to court. I tell you this not because it has any bearings on where we are now but because I wanted to show that there was no instability in that regard in his life. My husband and I are married, we have no other children and I'm a stay at home mom. The only "instability", if you could call it that, is we moved to our new home a year and a half ago. The problems began before that and have shown no signs of slowing down since.

    I'm sorry that this is going to end up being long but it's a long story. :) My son failed 2 newborn hearing tests in the hospital. Because he would react (i.e. startle) to sound, his pediatrician suggested waiting until he was closer to 5/6 months in case there had been fluid in his ears at birth (c-section) and to give the cochlear tubes and all that a chance to mature. At 5 months we were referred to a specialist. He passed the hearing test. They said no problem, nothing to worry about and off we went on our merry way. Come a year and 18 months and he's not talking. Making plenty of noise but making no effort to try to talk. Bring our concerns to the pediatrician and we get referred to an ENT (age 2, almost 3.) ENT says there is fluid in his ears and he needs PE tubes. Get the tubes. Still has a hearing loss. Sent to the university hospital here for an ABR (hearing test while under anesthetic that records brain waves) and find out he has a severe hearing loss and will require hearing aids. Get referred to get the aids, attempt to move forward. Still, just treading water. End up back at the university hospital at our request and find out the place that provided the hearing aids didn't have them set properly. Finally get them set properly earlier this year. He knows his name now and, unless he's being obstinate, he will respond. He's in speech therapy and still doesn't talk. At least, not much. He has less than 10 discernible words. He's been in Early On, Early Headstart and is now through an Intermediate school (where he was also at least year for 4 days per week for 3 hours a day). To hopefully give him security to do his best, we have requested that he have the same teacher again. After this school year he won't be able to go there anymore and I'm not sure where he'll be at this point.

    All of that to catch you up on the fact that he is hearing impaired and unable to properly communicate. Backing up, let me tell you that aside from the fact that he's NEVER slept for a long period of time, he was a perfect baby. Seriously, you couldn't ask for a better baby. Round about age 2 that started rolling off the rails. He has ZERO impulse control. He hits, he bites, he kicks, he spits. He especially seems to target his father with the biting more than me, though we don't know why. He doesn't even have to be mad. Sometimes he'll just up and throw something at a person or hit them with no warning whatsoever. At least when he's frustrated and can't properly communicate I GET that. Taking him to a store is a NIGHTMARE. He grabs things off the shelves, screams and cries if he doesn't get his way, etc. This is both with and without hearing aids (we wondered if maybe the stores were too "noisy" with the aids; it doesn't make a difference). At home we have to gate off the kitchen entirely because he WILL NOT STOP pulling everything out of the cupboards, the refrigerator, turning on the stove, etc. We often let him come in there with us to hopefully get him used to it and finally end up having to put him back out, generally. We have to have all the bedroom and bathroom doors closed at all times and we have them rigged with the baby door handle covers so he can't open them. He figured out how to remove those so hubby used zip ties to close them. He's still working on figuring those out. He will not leave the computer or the TV alone. He's broken a laptop screen by pushing it backwards and busting it and got the blue screen of death on the computer that we had to have fixed. He can now reach the mantle of the fireplace (we have the fireplace zip tied closed to keep him out) and wants to remove the pictures and things we have up there. He removes pictures from the wall. He takes the bulbs out of the lamps. He throws an absolute FIT when he can't have his way or something he wants (picture throwing himself to the floor, kicking and screaming and crying and then trying to hit or throw things). No sort of punishment makes him understand not to do it. We have to bird dog him at people's houses because he breaks things because he just won't leave it alone. Nobody will babysit him because of this. He knows basic sign language but only uses it when prompted. He's not potty trained though we were getting somewhere with it but he's backslid on asking to go (though he will go if we take him in). He sometimes has a fit about riding in the car (he doesn't want to be strapped in) and there is no car seat on the market that he can't get the chest straps undone on. Yet he'll ride the bus (and be in a car seat) just happy as you please.

    And the sleep. As mentioned above, he's never been a good sleeper. Not even as a newborn. He was generally content so his pediatrician said that some kids just don't require a lot of sleep. Too bad his parents do. ;) In order to get him to go to sleep he has to be restrained or he'll just get up and play all night long. His bed is in our bedroom because he gets up pretty much EVERY night. In the last 3 weeks he's slept all night once. Most nights he wakes up and screams and cries and screams and cries. Two nights ago he did this for (I kid you not) over 2 hours. I recorded some of it on my phone. He's awake, he doesn't seem to be having terrors. The night of the scream-fest it was clear that he wanted to be up and not in bed. He got up twice and both times he stopped crying/screaming and was laughing and about to go on his business but we don't allow middle of the night playing, that is sleep time. Put him back in bed and the SCREAMS commenced. He was MAD. I can only imagine what he'd say during these times if he had speech. The next day after something like this his behavior is worse, of course, because he hasn't gotten good sleep. But he won't nap.

    He hardly eats. We've started giving him Pedia-Sure twice a day to make sure he's meeting his nutrient requirement. He LOVES those. He would eat junk all day long if we'd let him but we've always made it a point to not let him. We want him to eat healthy and make healthy choices. He's had lots of blood tests but the doctor says some kids just don't eat a lot and his blood tests say he's healthy and he's the proper weight for his height. He's short and skinny but he's not all bones, if that makes sense.

    He is CONSTANTLY on the go and destructive of his stuff and our stuff. He loves to rip up books so we read them to him and then put them up. He tries to hit the cats (he wants to play; they are not amused), he shoves other kids but it doesn't appear like he's being mean or intentionally trying to hurt them. Because he was in school, they were notifying us of his behavioral problems (pushing other children, taking things from them, sweeping things off a table, throwing toys, etc.) so we took him to the doctor again and she and the teacher both said ADHD so he was put on medicine. Ritalin did absolutely nothing so we went back and he's now on Vyvanse. 20mg is the smallest dosage but it's a little too much (makes him spacey sometimes) so we were splitting it in half but you're not supposed to split because you don't always get the right amount, etc. etc. And it's still not right, I think we may have to try something else but I'm reluctant to throw medicine at this child. But they won't even let him in school without it (we tried it before and they called me to come get him he was so off the charts). Last week we went to the doctor and asked to be referred to someone who specializes in this. Reading this board, I see that we should also be trying to get into a neuropsychologist and I will be calling the office tomorrow. I'm asking that they send us to the university hospital again. I don't know if we're allowed to say our state and all that out of privacy so I'll leave it out for now but the university hospital is wonderful.

    The reason it's taken so long to get this far (medication was started this year) is because all the doctors said this was his way of acting out because he couldn't hear. It didn't quite FEEL right to me but what do I know? Certainly if he was frustrated that he can't communicate (and he's always made noise and pointed or taken us to something he wanted), he'd probably act out. But now that the hearing is improved the behaviors haven't. In fact, I might even wager that they're worse.

    He's had an MRI (normal) and a cat scan (normal but explained the source of the hearing loss) of his head, genetic testing (normal), a million blood tests (normal), eye exams by a specialist to rule out things like Usher Syndrome (eyes are great), etc. All of the tests were to find the source of the hearing loss. Cat scan showed a malformation of the Mondini and this is not fixable. No other issues were seen.

    And that's where we are. We clearly need some more intervention here. We are exhausted, to say the least. We never know what the new day is going to bring. He's such a beautiful and funny little boy with a smile that lights up the whole world and we just don't know what to do to help him. We are frustrated and scared and seem to be the only ones pushing for answers. So that's our story. Hope I didn't leave anything out lol. Again, I apologize for the length. Comments and suggestions are welcome.

    Thank you for reading!

    ETA: I was reading through this to make sure I got all the big things and when he goes to bed I said he's "restrained". Let me clarify because that sounds like we strap him to a bed or something! He generally falls asleep laying next to one of us (so we can keep him in the bed) or with Grandma in her chair (and then we move him to his bed and he wakes up a couple of hours later). He also has an eating and bedtime routine but they don't seem to matter. He is often up for 2+ hours when he goes to bed. He has no interest in watching TV either. Not that we want him to be watching TV but doctors like to hit that first with how much TV are we allowing him to watch. He has no interest so none. :)
    Last edited: Aug 21, 2011
  2. TeDo

    TeDo Guest

    I am so sorry you guys are going through all this. I can only imagine your (and his) frustration with all this. First, it is against the law for a school to make attending school conditional on the use of medication. They cannot "deny him an education if he isn't medicated" once he is of kindergarten age. Since he isn't there yet, I would immediately request in writing a "comprehensive evaluation for Special Education Early Intervention services". Make sure you request "academic, IQ, functional, Occupational Therapist (OT), and Speech assessments". Send the letter Certified Mail with Return Receipt Requested. This way, by the time he's old enough to start kindergarten, you can have an IEP in place. For more about that check out our Special Education 101 forum.

    Second, you definitely need to find a Child Psychiatrist for long term assistance but definitely look for a neuropsychologist. They do extensive testing to figure out exactly what is going on and give you suggestions for dealing with it. It may very well be that he IS very frustrated. Imagine what a "normal" kid his age can say AND understand what others are saying. He may be able to hear but he probably can't understand what is being said because he hasn't learned it yet. Most kids his age have learned meanings and can understand so many things that your son is only now able to hear. He may be almost 5 but as far as language goes, he is an infant and because of his age, people expect things from him that he just cannot handle. I really feel for the poor kid.

    Others will come along I am sure. Week-ends tend to be a little slow so be patient. I am glad you found us but am so sorry you needed to. Many {{{{(((HUGS)))}}}} to ALL 3 of you!
  3. OrganizedChaos

    OrganizedChaos New Member

    Thank you for the suggestion. I will go to the forum so I can find out where to send it and get on it. This is such a vital message board for parents because there is SO MUCH to remember and so much we don't even know! :)

    You are right. I pray that this is the issue. We do talk to him as one would to an infant just learning to talk. (i.e. repeating "book" a million times while showing him what a book is). We don't baby talk but we are careful not to be too complex as he is just learning. The university hospital said to "start over" with the speech. We talk to him ALL the time; telling him what we're doing, what he's doing, etc. Yesterday was wonderful because he was bugging one of our cats (he was under my bed) and the kitty scratched him (these parts are not wonderful). He didn't get him badly (it didn't even break all the skin, just the top layer) but it was enough that my son cried like the cat ripped his hand off and my son said, very clearly, "kitty". He does that sometimes but won't repeat it. But it was so wonderful to hear! Just melted my heart as I was rocking to soothe him (he comes to us to be soothed when he's hurt) and explain again about the kitty. :)

    Thank you for your reply. Just knowing that we're not alone really does help.
  4. TeDo

    TeDo Guest

    Does he get any Speech Therapy? That is another thing I would push for as soon as possible. Just you guys teaching him isn't enough. Also, does he have 100% hearing now or are there still issues/limitations? I have no experience with this so I am curious how they test EXACTLY what he hears and how well.

    You have come to the right place. There are so many parents here who have huge hearts and shoulders as well as a vast wealth of knowledge on just about anything. Again, welcome.
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    In spite of the fact that he is hard of hearing, it sounds like more is going on than just that. There are hard of hearing children who do not behave like him.

    My suggestion is to take him to a neuropsychologist. They in my opinion are the best and brightest and certainly most intensive diagnosticians. I would be surprised if his diagnosis was only ADHD. Please help him and help yourself (to sanity!) by scheduling this sort of evaluation. It can help point you in the right direction and make a big difference. Neuropsychs can be found in children's and university hospitals. It's too bad you don't know if birthmother drank or used drugs during pregnancy. Could you ask? Would she be offended?

    Hugs and keep us posted!
  6. InsaneCdn

    InsaneCdn Well-Known Member

    This kid hasn't heard much until he's 4???
    He's got every reason to behave this way - but of course, it can't go on.

    1) Start sign language. All the "professionals" will tell you not to, but you HAVE to get communication going. Don't go as complex as ASL unless pros recommend it - I'd try SEE instead (sign-exact english - the whole syntax is ENGLISH, and you can speak and sign at the same time, word for word.) Or even "baby sign language". Anything to get him able to communicate FAST. The need to communicate is a basic human instinct - and not being able to do so is driving him insane.

    2) SLEEP is an absolutely critical issue. And most MDs don't get it. Ever. been there done that x 10. Its about quantity of sleep, and qua lity of sleep. Sleep is a complex issue - and the number of other problems that cause sleep disturbances is HUGE. Which is why MDs don't generally "go there". But sleep problems alone will generate severe behaviors.

    3) Get in touch with support services for the deaf and hard of hearing - they will have specialty services for kids, and probably can refer or give you names for good resources as well. You're going to need these people for the long run.
  7. OrganizedChaos

    OrganizedChaos New Member

    Thanks again for the replies! Much appreciated. :) In answer...

    Yes, he gets speech therapy 2-3 times per week (he just had it this morning, in fact. He wouldn't settle for her, though; he kept throwing the things she'd get out to work with.) His hearing is approximately 95% with the hearing aids. He wears the aids all the time except for sleeping and bathing/swimming. He loves to take them out all the time and throw them but he keeps them in for the most part.

    At his last appointment a couple of weeks ago, the university hospital doctor that he sees for the hearing/aids said that since he's had them since February and has made no improvements to the behavior that it's likely not a hearing issue and that there's something else going on. I have talked to plenty of parents who have hearing impaired children and while they do sometimes act out, it's not to the degree and frequency that my son is. :(

    I have asked the birth mother several times (as has her mother) if she drank or did any drugs. She always says no and I have nothing else to go on but her word.

    He got his proper hearing aids just before his 4th birthday this year (he's had them since February). The 6 months prior, when he had the aids before, they weren't set properly so they weren't doing him any good. Please understand that we weren't just sitting idly by knowing our child couldn't hear. Because he would "respond" to noises/talking, teachers and doctors both said he was stubborn/lazy/etc. It wasn't *obvious* that he couldn't hear, honestly. When he looks toward a noise you make or somebody talking, you assume that he can hear. :) Then, because of our insurance, we have to go through what I like to un-lovingly refer to as "referral hell" to get anything done. And then we were further behind because of the improper hearing aids. It's really been a long road just to get to this point with the poor guy. :(

    He knows basic baby sign language. We were teaching him that way before we even knew this (though he didn't pick it up). And now, he knows the signs for: More, please, thank you, eat, drink, cat, help, potty, no, yes, stop. Those are the basics that he knows but he generally only uses them when prompted. (i.e. "Son, are you hungry? Do you want to eat?" And then he signs eat.) He doesn't come up to us and sign eat or anything, really. He did "potty" without prompting for a while but he's since backslid on that and isn't asking to go anymore (though if we prompt he'll sign it and if we take him he'll usually go). University hospital said not to do sign language anymore but we and the speech therapist agreed that we would continue it. I'm sorry that I didn't put this in my original post, I was trying to remember everything! :)

    I absolutely agree with you about the sleep! And we've learned in the last year and a half that we have to push push push for everything so we'll be push push pushing to get this sleep thing figured out and handled. We are currently in "referral hell". We can't do a thing with our insurance without a referral. For speech therapy I literally called the office every single day. They didn't like me at all. The feeling was becoming mutual. :-\

    We have been finally getting somewhere with resources for him. Many more to go but things are now moving in the right direction. :)

    I think that's everything. Thank you for the warm welcomes. :)
  8. InsaneCdn

    InsaneCdn Well-Known Member

    Has he had an Occupational Therapist (OT) evaluation (occupational therapy) - if not, that should be easier to get a referral for - and you'd be looking specifically for sensory issues and/or motor skills issues. Occupational Therapist (OT) can test for both - and has therapies that help. PLUS, info from Occupational Therapist (OT) is useful to others like psychiatrists and neuropsychs. Occupational Therapist (OT) evaluation is usually not expensive - so if you can't get coverage, you might want to look at just paying for this piece.
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    If he does not respond to you, I'm wondering if he is on the autism spectrum. Most kids, even hearing impaired, are responsive to others. Is he aloof? Does he ever seem like he's in his own world? If he knows the signs and does not initiate them, he is not communicating, which can be a red flag.j

    You can get an Occupational Therapist (OT) to test him for sensory issues through the school district. My son had his Occupational Therapist (OT) and PT therapist from school. There is no charge.

    Just a thought.