I don't know where to turn next

Two suggestions, one theoretical and one immediate and practical.

Tehoretical: Nobody can diagnose over the internet and what you say is not classic. However, there is enough there that hints at something. *Just in case*, look up high functioning autism and PDD. I really don’t know, but some of the things you say sound like soe of the things I read (and many don’t so this is just a wild guess.) If you see something that seems to fit, ask here for more advice on who can do testing.

Immediate and practical: As you have proved to yourelf, flashcards and visual memory are *not* the way to go. When someone else had a similar problem, I typed up a long outline about how to teach the alphabet in a very effective multisensory way (I have used it very effectively with a kid with far worse language disability than yours) and how to make your own materials to do it.
I include this outline with a whole email packet of how-to-tutor materials, now up to a book in progress, which I send out to anyone who asks. Just email [email protected]

Thank you for your response and suggestions. Yes, I agree it would be difficult to diagnose over the internet, but I’m feeling so lost that I was hoping someone would read my story and recognize something familiar in it, especially, as you pointed out, there’s nothing “classic” about anything I’ve described.

I did research autism a bit and agree that he does display *some* of the symptoms, but at the same time, I think that about dyslexia as well. Where would I turn to for an evaluation for either? I don’t think the school is being very helpful. In one breath they are telling me he is perfectly normal and just having a hard time adjusting, and in the next, they tell me they expect him to know 25 high frequency words by November, when he can’t even master the alphabet!

I would be very appreciative of any teaching material you could provide. I will email you to request it. Again, thank you for your response. I think I’m just needing to unload and find a little support/sympathy/understanding more than anything. I appreciate you providing a little of all of those things.

Well the Pervasive Developmental Disabilities (what they call atypical PDD or NOS— not otherwise specified? Don’t you just love this alphabet soup? Might just apply… As you say it isn’t anything too typical or classical.
You might work on more general auditory skills (vs. specifically the alphabet stuff). Take a look at Phonemic Awareness books on amazon. I particularly like “Phonemic Awarenes in Young Children” by Foorman, et al. (more group experiences but many things applicable to one child).
And “Phonemic Awareness: Playing with Sounds” by Fitzpatrick. Both these books include alphabet activities but only after the child has some basic skills. Why they push alphabet skills with such young kids is beyond me.

I don’t advocate giving up on sound awarenesss but emphasizing it.

What des said. Get those books.

Since what I advocate is flexible with constant feedback from the child/student, and is based on linguistics and sounds, I know it will work well with whatever des recommends.

Dyslexia is a vague term which is often misused. I have my take on it in one of the posts that will be sent.

If he is dyslexic, what des and I (and Sue and Janis and pattim and the NRP … ) recommend is what has been proved over and over to work, taking time and doing it step by step. If he isn’t dyslexic good teaching methods work anyway. So either way, do try it.

Des, will you please suggest where she can go to look for testing for PDD?

You can have your child screened for PDD or HFA at any Children’s Hospital. All will have a developmental psyche on staff for such purposes. What you have described is certainly not out of line for PDD or HFA, but it remains to be determined by a knowledgable diagnostician before any could say for certain.

Another possibility is CAPD, which is often mistaken for HFA/AS by persons who are not very experienced in diagnosing and look only at immediate behaviors without considering the full range of impairment necessary to make the call of a Spectrum disorder.

Good luck to you and please let us know how things turn out.

Would a standard hearing test rule out or confirm CAPD? I just had his hearing screened by an audiologist last week, and I made sure to tell them about some of the problems he’s having. I didn’t read about CAPD until after the screening or I would have mentioned it specifically at the time.

CAPD is indeed one possibility. As I understand it, no a regular hearing test isn’t enough, just as a simple eye screening by an optician is not enough to check on visual *function* issues.
You need a professional audiologist for this. I don’t know what you have had already, but look at the reports and talk to the previous tester, then look further — university audiology departments are good places to start.

I just wanted to say first of all, that I have walked in your shoes. My own child could not learn his letters. He is learning disabled. It has been a long road but he is currently in 6th grade in a parochial school. He was in special ed from age 3.5 to 10 when we moved him from the public school to his current school. We continued private therapy and had him repeat fourth grade (public school is behind parochial school and he had not been a strong student in public school). He is now mostly a B student. He reads on grade level now after years of therapy. He still doesn’t learn math easily.

There are a lot of therapies available today that can help a child but first you need to figure out what is wrong.

Hearing accurately does not mean that a child processes accurately. You need to find a audiologist who specializes in auditory processing. Universities are one source as are large medical centers.

Does your son have trouble with visual patterns? Can he recognize when things are the same or different? My son had developmental vision delays which also made learning the alphabet difficult (in addition to auditory processing deficits).

Schools take a wait and see attitude but I certainly would not.

Some people take a child to a neuropsychologist who puts together for them. For a variety of reasons, we never went that route but rather had evaluations by discipline specialists —speech and language, audiologist, occupational therapist, neurologist, ect.

Beth

As I was reading your post I thought I was reading about my own 5 year old son. He has a LOT of the same problems. My son also was in a year of speech at a special pre school and they told me he was ready for Kindergarten. Socially my son is fine. A lot of the kids still can’t understand him but he makes up for the lost language with expressive body motions. Academically he just doesn’t get it either. I got him a tutor and he just doesn’t get it for her either. We’ve been working with flash cards, writing his name in sand, dry erase boards, puzzles, paint, anything we can think of to get him to learn his letters and he only has learned R which is the first letter in his name. I feel your frustration and heartbreak. My son also cries every morning and never is excited to go to school (and it’s Kindergarten, can you imagine when they get older?) I feel like all we do is work on letters and it’s making him feel stupid because he just doesn’t get it

I am new to this forum also. I am also looking for information. The only thing I can tell you that I have learned is to request in writing an SST (Student Study Team) meeting or an IEP meeting and the school has to set one up.

I took my son to his physician, for me it was a waste of time. He referred me to a school for children with speech delays and learning disabilities for an evaluation. It was too expensive for us so we’re waiting for the evaluation at the school. I was told by our vice principal (who happens to have a functioning autistic child) that a referral to a neurologist would be helpful. That’s what I’m trying to do next.

Good luck with your child if I learn anything else I will let you know

Well a lot has happened in the week since I first posted. My son’s sppech pathologist agreed that she felt he had an LD and was concerned that his speech was not progressing as quickly as she expected. So she suggested we see his physician and if he agreed, that he write a letter requesting he be tested.

His doctor did write a letter for us since he agreed about the LD, but said he had some other concerns, so referred us to a pediatric neurologist as well. We had that appointment today and I’m a little concerned. The neurologist stated that my son definitely has an LD as well as a speech/language disorder. He started questioning about the pregnacy, any medications I took, any illnesses I had, etc, etc. He named off several things that we could be looking at including ADD, autism, mini-seizures, behaviorial disorder.

We now have an MRI and an EEG scheduled for next week. I’m very nervous about it, although I’m sure everything will be fine. I guess it’s just such a drastic difference to go from having to fight to convince people that my son has an LD to the possibility that he has something more serious than I imagined. I realize none are necessarily earth shattering, but I guess I never opened myself up to the idea that he may have MORE than just an LD causing his problems.

Thank you to everyone here for your advice and knowledge. And a big thank you to Victoria for the information on teaching the alphabet. I have all the supplies to get started and we’ll jump into it this weekend. I have a good feeling about it!

I’ll update when we hear the results of the tests. I’m sure I’ll be needing some advice and support.

{{{HUGS}}} He is the SAME kid as he was before the doctor appointment :)
He’s fortunate to have a mom who has kept up looking for the right questions to find the right answers.

Hi,
My now 37 year old daughter had many of the same issues your son has.

The doctors are ruling stuff out right now. It’s scarey but better know then to wonder.

Please let us know what you find out!

peace,
marge
http://www.net-haven.net

I would definitely explore APD (Auditory Processing Disorder). All audiologists do not test for this. Go to www.ncapd.org and look at the professional listings to find an audiologist who tests for APD.

Also, check out a copy of “Like Sound Through Water” by Karen Foli and see if that sounds like your child.

Janis

Thank you for the suggestions. It looks like we’re on the right track — hopefully we’ll get the results back from the MRI and EEG this week and the school is supposed to get the ball rolling on the academic testing.

I think an APD is still a definite possibility, although Autism has now been mentioned by 3 different professionals we have dealth with.

I will be sure to follow up when we get some type of results. Thanks again!

My dd qualifed through school district expressive language delays when she was 3. She had (still has) difficulty organizing her language when she expresses herself(although not handicapped now). Many times she still talks like she is under water.

At 5 I had her evaluated through a private SLP for complete Auditory Processing Battery of tests. She had many tests she could not complete - most were short term memory and sound discriminatory. In preK/K she too could not learn alphabet(although hers was more a sound/symbol issue, - what sound does the letter A make?) Hated school etc etc.

We later had her tested for CAPD through the Local University. She could only ‘hear’ 53% of conversations in noise levels of a normal classroom (could hear 100% in sound proof). I also realized she probably had fluid in ears most of her toddler years and discovered a number of food sensitivities.

I’m interested in hearing how your MRI and other tests go. Dyslexia runs in my husbands family, but I always felt there was something else with her speech. It was kind of like a mild aphasia. She had split her forehead open when she was 2 as well as another incidence of slipping at the swimming pool and hitting back of head really hard. I’ve always wondered if she some kind of brain injury, but have never had any kind of MRI etc. done.

The one thing I ‘ve concluded in the last 4 years I’ve been trying to help my son is that not every problem has a name or fits neatly into a specific disorder. It certainly sounds like your son’s brain processes differently than the norm. Funky brain wiring can create many different types of problems in school, socially, etc .

I really believe that a comprehensive evaluation by a neuropsychologist is a good place to start. It probably won’t be the only opinion you end up needing - but its one place to gather alot of information that can then be fleshed out further by specialists.

Thank you for the suggestions! I’m still just as frustrated as I was back then. A week post-MRI and the neurologist hasn’t bothered to read the results yet. The nurse did say that she didn’t see anything on them, but he’ll have to verify that. :roll:

The school is still dragging its heels, which is really irritating me. Nobody wants to explain the process to me and depending on who I ask, I get different answers as to what that process really is.

I did find that our local children’s hospital has some highly regarded neuropsychologists, so I think that will be my next step.

When I read your note on your child it sounded very much what we went through a few years ago with our daughter.

Our daughter at the age of 4 was diagnosed as having an auditory processing disorder. Symptoms included late speech development, poor articulation, difficulty learning letters, difficulty following instructions, etc. Simply put, these kids hear ok but the brain doesn’t get the message. You may want to consider getting your child tested for auditory processing disorder. At the time our speech therapist suggest the testing since she was familiar with the disorder.

Good luck !