[momof6plus]

I've had this fs for 6mos now he is 4 1/2 yo. When he came he was in diapers and had no concept of the potty or bodily functions at all. His vocabulary did not include words that kids need to go potty. He was neglected and drug affected but nobody told me to what degree. He is now pt and started preschool a couple of wks ago. He has major screaming tantrums when he doesnt' get his way and if he has to go to the corner. I know that something is not right with him, he doesn't understand the simplest concepts or directions. Sometimes he can do things like "put your shoes in the closet" and other times he will put his shoes in the bathroom when told to put them in the closet. He is inconsistant with retaining information like counting or abc's somedays he knows and other days he says 4,9,m,h,7,jk etc...

He has sensory issues or food issues, he will not eat veggies in any form. He will throw up if anything of a "different" texture like corn is in his mouth. He acts like he is going to die after taking a bite of applesauce. He only wants to eat cereal and breads, and meats. He covers his ears and hides when the vacuum cleaner is on. He flaps at the table and when excited or upset (like an autistic child does). I know he is not autistic but I don't know what the problem is. He also has had lead levels as high as 17 for long periods of time.Anything over 9 is bad.
After insisting and not getting any help from cw I finally got his hearing checked. At the first 2 tests they were inconclusive, some hearing loss but couldn't tell how much because of lack of cooperation and understanding the test on his part. Finally the ped. tested him on a special machine used for infants and he failed to hear all the tones in both ears.! We have an appt. to go to the ENT spec. and was wondering what will they do. I know he hears but it's like he can only hear parts of what you say or he cant' hear the details of the words. when you say "the lost boys" he hears "the last toys" or other words that are similar. "chocolate" is "kochlate". He is guessing to fill in the blanks or using words that he already has in his vocab. to make up the sentence. When he came to us his speech was very hard to understand and now it is much better just from working on pronunciation with him. He is at a 2yo level emotionally and developmentally. We got an appt. for the Child Health Specialty clinics to try to get a diagnoses.

Does anybody have any info on any of these things or have a similar situation. What will they do for his hearing loss? This little guy has so many things working against him hearing loss, neglect, lead poisoning, drugs. I just hope that we can get some help so that we can continue to help him.

[crick]

The tests will vary, but mostly the ENT will likely do tests to determine the following...

show how outer and middle ear are working, measures how your child reacts to sounds, checks the ears' response to sound, and checks the brain's response to sound.

Usually they have a sound booth that you sit in and listen for sounds. They generally have kid friendly "lamps" that light up when a child hears a sound and clicks on a buzzer or raises his hand.

They also do tests by inserting tools in the ear, that a machine measures. These do not hurt and most Pediatric ENT's are very good with the kids and making the kids feel comfortable etc.

I don't know how long they do hearing tests on kids now, but when I go, it's about an hour. (although a complete diagnostic would take longer...don't know if due to his age they'd do it all at once or what) I'm very tired after a hearing test, eventhough you just sit there. Your brain is working overdrive during the tests and it is draining, so just be prepared for that later...he might be tired and I wouldn't have much planned later that day.

Once they determine how much loss and what kind of loss he has, then they'll discuss with you the kinds of hearing aids or other options with you. Who knows...maybe he has a physical correctable problem that is causing the loss etc.

Sounds a lot like me vocabulary wise when I was little. I didn't hear words for things so often made up my own words. It's common, and not a sign of a learning disability (based on that action alone I mean).

Along with the h.aids, if that is what the ENT recommends, I would look into speech therapy as well, to help him further with the pronunciations and verbal skills.

Hope this helps!

[momof6plus]

Thank youfor the info. it does help a lot. Yesterday I asked him if his brothers were downstairs and he said Yes. I then asked "what are they doing?" He went into a tantrum screaming "I don't want to!" He thought I said "go lay down." This is the kind of things that happen. I hope that we can get some hearing aids for him or something. I am guessing that he had full hearing at birth and then from untreated ear infections something has damaged his ears? He does know some words and can say them clearly so that's why I say that, but I don't know.
My next fear is that cw mentioned moving them to a fh closer to where the bp moved. She had mentioned trying to move them before Christmas and the appt. is not until Jan. I am afraid that he won't get the help he needs if he is moved. I think that is dumb because the bp's chose to move 2 hours away from the kids. His bp don't even notice that he has a hearing loss at all. I am just glad that dhs intervened finally this is the first time the kids have been in fc and the neglect and drugs has been going on for years. I can't imagine what his life would be like if he went on the way he had been and never gotten any help. They just called him "retarded" and "stupid" instead of trying to get him help.

[ajjhmf]

One of teh biggest struggles I've had in pareting my J is figuring which problem is causing which behavior. And it seemed to change minute-by-minute.

So this is what I did, I started looking at his issues as marbles. Each one it's own size. The biggest one, I would work on until I could 'take it out of the bag' so to speak. I kept at it until at this point, three years later, I'm down to just a few marbles left besides the 'normal' kid marbles.

It sound's like the hearing loss is probably your biggest marble at the moment. If it were me, I'd focus on that for a while. If he can't communicate properly, then everything else will be very hard. Crick's advice in that area is second to none, really. She knows her stuff. Also, my son was 4 and developmentally 2 too. It's so hard to look at that giant body and remember that they are just a 2yo inside. I wouldn't worry about the letters and stuff yet. Focus on the communication and daily living and the rest will start to fall in to place eventually.

Blessings,
Jenny

[qs mom]

Start learning and teaching him some sign language - learning to communicate hunger, thirst, sleepy and potty needs will eliminate a bit of stress on both him and your family.

My son failed 2 hearing tests at school. They also used the thing at the ped's - he tested flat. I took him to the ENT. They tested him in the sound proof booth and thought I was crazy. He's hearing was fine.

However, he had sleep apnea. For that reason, he had his adnoids removed. He has the most incredible hearing now. He can hear my cell phone ringer from 3 rooms away w/ the door closed.

Anyway, work on way to communicate first while waiting for the appointment, and then move on.

[Hadley2]

Our fd wasn't as severely affected, but her problems in this area came down to a combintion of conductive hearing loss (lateral tubes) and central auditory processing disorder. CAP was only diagnosed a year after her first set of tubes went in. CAP can be present when hearing is normal--that is why we didn't test for it until she had a good long period hearing well. She is 7, very bright, and worked out her own "accommodations" in the classroom long ago...hypervigilant, looks to see what other kids are doing, etc. The recommendation now is to give her a sound system that reduces the signal-to-noise ratio and some other strategies for the teachers to use. Anyway, same thing to a different degree on not knowing some common vocab, not registering directions, etc. This is a cognitive trait associated with FAS/FAE, so you might see it clumped with other physical, cognitive and behavioral traits such as sensory integration problems, lack of empathy, etc.

You're right, it's a long road to untangling these things and moving the child will only complicate that dx, treatment and the child's receptiveness to help. I hope they haven't moved him and that you're getting the professional support you need from ss.

[Sun8]

I sent you a longgg winded email with suggestions along with a link, so get your ready!

[spedmama]

Hi. Please take this in the spirit in which I ask...I am curious why you state he is not autistic? I certainly am not doubting your information because you live it daily and I don't know you... I am just going off your post so forgive me because I know I am missing huge chunks of information as I write. Take what applies and ignore what does not help, I will not be offended, and please do not feel offended if this is over simplistic. One thing about Autism is that it is diagnosed differently in different areas and because it is a diagnosis based on symptoms, not a genetic or medical condition, there can be other conditions overlapping. I have a son who has an acquired brain injury due to a brain tumor which grew very large and had to be removed at age 2. Prior to that he received a PDD-nos diagnosis and since then he has received autism diagnoses. They may be separate issues, or the brain injury may be causing the autistic behaviors. Truthfully it doesn't matter. The autism label gets us appropriate services. Sensory integration therapy, communication therapy, occupational therapy, academic strategies that match his learning style, etc. This is why I do not argue with anyone who says my son has autism, or PDD-nos or Asperger's, (depending on how he performs during testing on that day, after years of therapy he has improved in many areas, so does that mean he is no longer Autistic or that he can control the symptoms, for example using better eye contact?). I am also a speech language pathologist and I work with both kids with Autism and kids who are Deaf/ hard of hearing and kids who have both. (I am not sure why God thought I needed both to work it and live it, tee hee). I too have struggled at times to figure out what is driving my son's issues at times then I realize it usually doesn't matter, I just need to respond with what I have at that moment. For students who have Autistic-like symptoms and hearing issues, they tend to be visual learners. visual schedules, picture communication systems, sign language (depending on the students motor skills and depending on the willingness of others around them to learn sign language- I work at a bilingual ASL school so all staff and families are fluent in ASL). Regardless of the use of ASl or English, PECS as a picture communication system is a good method to establish functional communication including connecting with a communication partner in order to request or comment. It is a very easy system to learn and use. Students who are able to develop speech or use of ASL develop langauge with less frustration when such a system is used. Visual communication and organization systems (like take pictures of your car and show the car when it is time to go somewhere so he doesn't have to try to process what you are saying and then go into a tantrum., maybe use a visual timer to show 5 minutes for warnings before things change so he doesn't have to switch to quickly between situations/activities)--are well known for reducing anxiety and behavioral challenges. Tasks can further be broken down by showing the order to do things visually like putting on winter clothing, ...from top to bottom snowpants, coat, hat, boots, mittens.
Just some ideas until you find out what is going on. Even if not actually Autism Spectrum Disorder, it sounds like he has some characteristics similar to students with autism and strategies that work with kids with those kinds of issues may be helpful to him. Kids who are deaf are sometimes misdiagnosed as autistic due to their communication issues, however he sounds like he has even more going on, like the sensory issues, repetitive stereo-typed movements (hand flapping) and transition issues which are very common to kids with autism. Often students who are Deaf/Hard of hearing are not appropriately diagnosed as autistic because people think they are making "good eye contact". Many people with Autism Spectrum Disorders make decent eye- contact, but especially people with hearing losses. The reason for this is that they are forced to look for what little information they can get. Even our most challenged Deaf/Autistic students have fairly good eye contact. Kids tend to copy sign language and are seen as "learning" however, it is often equivalent to echolalia (repeating oral language that people hear) yet it is not caught because of the nature of how sign language is taught to many young students. I hope you find out more information at your assessment. It is a different journey when students are both Deaf/ HH and have autistic like symptoms. Your child may not but given your post, it does seem like he has some challenges similar to kids with Autism so you can at least know where to find tools to help him understand more and become more organized and calm when he is frustrated adn tantrumming. My best to you and him too!

[Matushka]

My first thought as an Audiologist is that if this child does have a hearing loss, an appointment in January is not soon enough (am I reading that right?). I suggest you ask for a referral to have additional testing sooner. His pediatrician may be able to get him into the ENT sooner if you push for it too. You may be able to get the testing at a clinic, school system, hospital or ENT office. It does seem that the child has speech and language issues which need treatment by a speech-language pathologist. If he is not already receiving services ask for a referral for those services too. Regarding the sensory issues, an occupational therapist with training in sensory processing disorder (SPD) would be in order. From your post, it does sound like you have many loose threads to pull together so I wish you all the best. Please keep us updated.