Loss of verbal skills

[AmyinMD]

My ds will be 3 next week and he seems to be losing the few verbal skills he had. He used to say one word when asked to pick between two choices. He is rarely doing that now and he will no longer point. He had a few signs too but he will not do those anymore either.

 

Ds has been getting therapy through EI but that will transfer to the school district next week when he turns 3. We had his IEP meeting earlier this week and he qualified for Special Ed Pre-K at our local school (they were wanting to bus him to another school but a spot opened up luckily) with two half hour speech sessions per week. His teacher was at the meeting and also requested an OT eval (I had wanted this but she asked for it before I did) and a psych eval. They have 60 days to administer the tests to him. Ds has no diagnosis right now other than a speech delay. I'm wondering if there is more I should be doing while I'm waiting. Ds will start Pre-K on Jan 20th. He turns 3 right before the big semester break so we are waiting to start him after the break. He has major separation issues I think if we did the 2 days he could go before the break we'd be back to square one after the break. I cannot run to the store without him crying the whole time. He is rather attached to 10 yo big sis though and will calm down if she's around. I'm thinking about trying a new Pediatrician and see if they have any recommendations. My last one has given no advice at all even after I have mentioned ds's delays the last couple visits. I really feel helpless as to what to do to help him. He's been in speech for 7 months now and probably doing less than he was when he started. He's had some really wonderful people working with him too. They did mention during the IEP meeting that the loss of verbal skills happens with autistic children but they said it usually happens closer to a second birthday than a third.

 

Ds is now developing all sorts of weird behaviors. He bites on the couch armrests all the time, he bites everything (he's been doing this awhile), he spits a lot, and lots of screaming. He is starting to freak out over his shoes being off him too. I have made him sleep without them the last couple nights and it was over an hour of tears both nights but he did sleep well once he got to sleep.

[LizzyBee]

If insurance would cover private speech therapy, I would do that in addition to or in place of the school therapy. My sister did both with her youngest son, and he was still in ST for about 10 years. In his case, private therapy was one-on-one and much better quality, while the school therapy was group therapy.

 

I would also pursue an evaulation by an OT for sensory processing disorder if you haven't already.

 

On the shoe issue, could you just have a pair of soft shoes for inside use only and let him sleep in them? Unless there's a medical reason not to sleep in shoes, I can't see making that a hill to die on. One of my nephews used to shower at night and sleep in his clothes that he was going to wear the next day. It might have been weird, but some things are just not worth the battle.

[SailorMom]

:grouphug:

First, is there a specific reason he needs to go to pre-k soon? Some kids are not ready (no matter what else is going on) to deal with a pre-k situation at 3. The extra stress right now before you know what else is going on may make everthing worse, and may make him harder to diagnose.

Second, the neuropsyche eval is going to be the one that will give you the most answers - so as long as the school is working that (and it will be a complete eval - my son's was 6 hours long over 3 visits) I think just making notes about behaviors that concern you, diet, sleep patterns, etc would be very helpful once that comes around.

60 days is pretty reasonable (some neuropsyches have 6 month waiting lists....).

If they are not providing a complete eval - you may want to seek a referal to go for a private evaluation.

Don't immediate worry about Autism. It could be nothing - he may just be having a rough couple of months.

Or it could be something totally different. I know that children with hearing loss or other communication issues get so frustrated at thier lack of ability to make people understand them that their behavior goes downhill rapidly.

My poor DS at about that age was a mess because of his verbal apraxia. He became more clingy, angry, would have complete melt downs for reasons we didn't understand at the time.

Hang in there.

[Dobela]

I agree with private therapy often being the best choice. The goals of private therapy are more global - as in helping the child be a more successful person in all places. The goals of school based therapy tend to be looked at in how does it effect the child functioning in school environments. I have seen children need therapy, and qualify for it privately, but have the school deny it simply because the therapy doesn't have enough negative effect on school work. Even in preK settings therapy is sometimes done in groups, in the classroom with lots of distractions, and so on. The therapists are good, but the environment is very different.

 

If you feel you are not getting a good response from your pediatrician, absolutely transfer to another. I would go to the new pediatrician without being negative about the other pediatrician though. They may be friends. When you go the first time I would take all old reports (or drop them off in advance), a long list of concerns, and let the pediatrician know that you are looking for help for your child.

 

I am a huge believer in early intervention and believe that the sooner the better. Another choice may be to ask other parents about private providers, and even pediatricians, if they have children with special needs. I found a center that specializes in therapy for children that way. I can't say enough good about the therapies my dd is receiving.

 

While loss of speech is a characteristic of autism, there are other things that could be happening. A mild hearing loss, chronic fluid in the ears, low oral motor muscle tone... When my son was 3 he simply couldn't handle the lights and noises in stores, especially WalMart. Later we learned that he has significant visual processing issues that just kept his whole body on edge sensory wise. Once we addessed the vision issues we noticed that the other sensory issues decreased as well. OT helped as well.

[AmyinMD]

I think I'll order ds some Robeez for night and see if that works. He will not sleep alone and is always with me and I hate him sleeping in his shoes because he kicks with them. He usually sleeps poorly so I wind up taking him to the couch so dh can get some sleep. About half the time we wind up sharing the couch together.

 

Ds had his hearing checked by an audiologist last summer so we don't think he has any hearing loss at this point. I did find a new pediatrician to try today and I'll be taking ds there on the 18th. I'll have to look into what insurance would pay for. I hadn't really thought about doing private therapy until recently. We had thought his delay was mild but it seems to be worse than we'd originally thought.

 

The Pre-K I have such mixed feelings about. I don't normally send my kids to preschool but for ds I'm willing to try just about anything at this point. I have heard lots of wonderful things about the Pre-K teacher he will have so we are going to try it for a couple months. The downside to that is we have already lost our EI services to try the Pre-K so we can't go back to getting anything there.

[LizzyBee]

I think I'll order ds some Robeez for night and see if that works. He will not sleep alone and is always with me and I hate him sleeping in his shoes because he kicks with them. He usually sleeps poorly so I wind up taking him to the couch so dh can get some sleep. About half the time we wind up sharing the couch together.

 

Ds had his hearing checked by an audiologist last summer so we don't think he has any hearing loss at this point. I did find a new pediatrician to try today and I'll be taking ds there on the 18th. I'll have to look into what insurance would pay for. I hadn't really thought about doing private therapy until recently. We had thought his delay was mild but it seems to be worse than we'd originally thought.

 

The Pre-K I have such mixed feelings about. I don't normally send my kids to preschool but for ds I'm willing to try just about anything at this point. I have heard lots of wonderful things about the Pre-K teacher he will have so we are going to try it for a couple months. The downside to that is we have already lost our EI services to try the Pre-K so we can't go back to getting anything there.

 

What is Robeez?

 

My youngest was a poor sleeper and had sensory issues. She slept with us until she was 3.5, and she constantly moved around and kicked us. So I can totally understand not wanting shoes on your ds. Would wearing tight-fitting socks help at all? Both of my kids who have SPD only wear the Hanes socks that fit snugly and don't have seams.

[SailorMom]

Don't rule out hearing yet. He could have fluid you are unaware of....

[redsquirrel]

I thought EI was available until the August after the child turns three. My son's birthday is also in January and we just stayed with EI until the august after his birthday.

 

We also got services though CPSE and they were at home. It was the same thing as EI, with the same therapists, only the school district was providing.

 

Is there anyway you can ask for services to be at your home instead of at the pre-K? Or, if you have heard good things about the teacher, maybe you can keep that possibility open if things don't work out.

[AmyinMD]

I thought EI was available until the August after the child turns three. My son's birthday is also in January and we just stayed with EI until the august after his birthday.

 

We also got services though CPSE and they were at home. It was the same thing as EI, with the same therapists, only the school district was providing.

 

Is there anyway you can ask for services to be at your home instead of at the pre-K? Or, if you have heard good things about the teacher, maybe you can keep that possibility open if things don't work out.

 

 

You can get EI services until age 5 here but we lost them because we chose to use the school districts program instead. Ds had EI therapy today and will get one more on Tues before his bday and that's all we can get. Through the school district he'll get 2 therapy sessions a week instead of the 2-3 a month through EI which was a big factor for us. He does seem to do better when he has therapy. Almost all of his December sessions were cancelled because of bad weather and the holidays which may be part of the reason he's been doing so poorly lately.

 

I asked his EI therapist if she thought we should pursue private therapy and she seems to think insurance would not cover it. We could probably afford to do some private therapy out of pocket but we couldn't afford 2 sessions a week like he'd get at the special ed preschool.

[LizzyBee]

You can get EI services until age 5 here but we lost them because we chose to use the school districts program instead. Ds had EI therapy today and will get one more on Tues before his bday and that's all we can get. Through the school district he'll get 2 therapy sessions a week instead of the 2-3 a month through EI which was a big factor for us. He does seem to do better when he has therapy. Almost all of his December sessions were cancelled because of bad weather and the holidays which may be part of the reason he's been doing so poorly lately.

 

I asked his EI therapist if she thought we should pursue private therapy and she seems to think insurance would not cover it. We could probably afford to do some private therapy out of pocket but we couldn't afford 2 sessions a week like he'd get at the special ed preschool.

 

I wouldn't take the ST's word for it. Most insurance company's will cover an eval, but many require pre-approval for therapy. My dd9 had 6 years of private therapy, all covered by insurance. My sister's youngest son was in ST even longer, and their insurance covered in. My sister lives in MD, and her son had therapy through the school system and private therapy concurrently.

[sbgrace]

My son lost skills (honestly, the stopping pointing is more concerning to me than the speech you describe). His was, as it turned out, a metabolic decline. We didn't know until he was 3.5. That said, he was clearly not doing well physically by that point--sleeping a lot for example. My son is on the spectrum. When we treated his metabolic condition--well, particularly when we got his carnitine level to normal as he was severely deficient by the time we found it--he gained back his lost skills. Is your son healthy physically?

 

I'm mentioning metabolics because any loss of skills is a flag. But you would see other things too. I made a post about the signs on another board and I'll link it here to make sure you're not seeing anything else. http://www.mothering.com/community/forum/thread/734501/mitochondrial-disorder-information-and-video

 

It could be something else is bothering him physically as well and I would perhaps ask for a hearing check again. You are describing other regression too though. My son does regress when he's ill, outside of metabolics, so maybe something else physical is going on.

[Virg]

One of my twins has severe speech issues (articulation and language). He tests at the .01% in multiple areas. One thing I wish we could have done is get him private ST, he has been doing school therapy (you don't have to attend PS to get it here) for years. He did EI and then attended "communication pre-school" through afterwards, it was basically ST through play. He loved it and I think it helped a little. He is ten now and while he talks better, he has not moved up percentile-wise and now has a reading disorder. He only reads 40 wpm in DIBELS even though he has been reading for three years, his therapists think it is due to his speech problems.

 

My experience is a lot of children with speech delays get frustrated VERY easily, often resulting in biting and fits. (Not to say there is nothing else going on though.)

[redsquirrel]

You can get EI services until age 5 here but we lost them because we chose to use the school districts program instead. Ds had EI therapy today and will get one more on Tues before his bday and that's all we can get. Through the school district he'll get 2 therapy sessions a week instead of the 2-3 a month through EI which was a big factor for us. He does seem to do better when he has therapy. Almost all of his December sessions were cancelled because of bad weather and the holidays which may be part of the reason he's been doing so poorly lately.

 

I asked his EI therapist if she thought we should pursue private therapy and she seems to think insurance would not cover it. We could probably afford to do some private therapy out of pocket but we couldn't afford 2 sessions a week like he'd get at the special ed preschool.

 

2 to 3 therapy sessions a MONTH through EI? Are you kidding? My son got three 45 min speech therapy, two 45 min OT and two 45 min PT sessions a WEEK. It stayed the same when the school took over except the sessions were limited to a strict 30 mins. Even now that he is 'school aged' he gets two speech, OT and PT a week.

 

Given the limitations you are dealing with, I would def. go with the more frequent sessions. No doubt. A specific special ed preschool can be a great place.

[Tree House Academy]

My youngest son was speech delayed. He spent from ages 2-3 in speech therapy and did so well that they released him at 3 because he was speaking like a 5 year old. I definitely think your son has more going on than just a speech delay.

 

The reason I am posting to this (my youngest son is not special needs) is to let you know our experience of putting a very young fella in a 3 y/o pre-k for the speech issues. We tried it with my ds when he was 3. He turned 3 on Sept 29 and our ST benefits through TEIS ran out at age 3. If he was going to continue services for free, we had to get them at the ps (this was before the eval that finally rendered him ineligible), thus we had to enroll him in pre-k. To say that it was a NIGHTMARE would be putting it lightly. He was so young and so inmature for his age due to the delays that every day I got some kind of comment on his bad behavior. He wasn't being "bad," but in a class of 30 three/four year olds, his inmaturity really showed. The would sing the alphabet and he would lay on the table. They would go to centers and he would cry till he fell asleep. I removed him from the program after 3 weeks and have homeschooled him since then.

 

I would encourage you to keep a very close eye on the situation at school if you do decide to go the pre-k route. For my ds, it was doing way more harm than good. If you see any signs of it being a bad situation, please don't hesitate to pull him out and seek other alternatives. Now, our ps system allows the pre-k age kids to receive services with the parents bringing the child in for the session even if they don't come to pre-k. At least that is an option for kids now.

 

Best of luck to you all!

Edited January 8, 2011 by Tree House Academy

[Dobela]

You can get EI services until age 5 here but we lost them because we chose to use the school districts program instead. Ds had EI therapy today and will get one more on Tues before his bday and that's all we can get. Through the school district he'll get 2 therapy sessions a week instead of the 2-3 a month through EI which was a big factor for us. He does seem to do better when he has therapy. Almost all of his December sessions were cancelled because of bad weather and the holidays which may be part of the reason he's been doing so poorly lately.

 

I asked his EI therapist if she thought we should pursue private therapy and she seems to think insurance would not cover it. We could probably afford to do some private therapy out of pocket but we couldn't afford 2 sessions a week like he'd get at the special ed preschool.

This varies by state and even towns within our state. When I was working in preK EI, kids from birth to age 5 (weeks from kindergarten to be exact) were seen in developmental preschools. EI was from ages 0-2 and the other services were from 3-5. The only difference was the paperwork, how long between reviews, and where the funding was coming from (department of ed or Department of human services). In my state once a diagnosis of developmental delay is received, you can apply for state insurance that is a form of medicaid and disability. The insurance cost us a small amount each month and covered the cost of therapies that our primary insurance didn't cover. Without it we could have never paid for any of the services my son received.

[specialmama]

:grouphug: Amy, been there, doing that. :grouphug:

 

Please find a paediatric neurologist for you dc. There are tests (evoked potentials, et al, done in a children's hospital) that are essential for ruling out TREATABLE diseases that mirror what you describe, esp. with regression at a somewhat later age. My son does have autism, but his paediatric neurologist insisted on getting these tests done just in case. One of these tests measures if he is having seizures, even nocturnal ones or second-long ones that you can't see. Look into Landeau Klefner Syndrome. It's one of the ones we ruled out but it's still a possibility for yours. :grouphug:

[Ottakee]

I would agree with finding a pediatric neurologist as soon as possible. Sounds like there is something going on that needs to be figured out. My thoughts were also hearing issues, metobolic/mitochondrial disorders, seizures, etc. You really need a specialist to help you figure this out.

 

Also, if you get some sort of MEDICAL diagnosis for what is going on, the insurance is much more likely to pick up private therapy as well--and sometimes you can qualify for a children's special health care program through the state that helps even more and can cover mileage, etc.

[PeterPan]

Amy, some speech therapists are reluctant to diagnose apraxia, even though apraxia may be what he's dealing with. Traditional speech therapy can be almost ineffective for apraxia (or take a LONG TIME to get there). I'd first do some reading to see if the speech problem is apraxia. If it is, PROMPT is amazing for it. The biting, hitting, screaming *could* be solely due to his frustration over not being able to communicate. I wouldn't rule it out. Are you doing sign with him? I'd get Signing Time videos and watch one with him every single day. You need to get some communication going. But truly, PROMPT is astounding for apraxia.

 

There is a strong overlap with autism spectrum disorders and apraxia. A spectrum child could be apraxic, but also the apraxia can so shape their personality that it *looks* like autism/spectrum. You improve the communication, and the behavior problems improve. So you can't say now which it is, not just on what you're saying. My ds was doing all those things and still bites or hits when he can't communicate. Even withdrawal and seclusion are apraxia behaviors that can resolve with improved communication.

 

The first SLP we went to said she couldn't diagnose apraxia till the child started (which obviously wouldn't help, since he couldn't talk) and would work on "communication". I felt like I was getting the worried mother routine. So then I found a PROMPT-certified SLP who diagnosed him with moderate apraxia, dysphagia, said he had ALL the typical symptoms, and that it was totally obvious. First therapy session with PROMPT she had him TALKING. not communicating, TALKING!!!!!!!!!!!!!!

 

Well I hope you can figure out what it is. Not to be morbid, but has he been vaccinated recently or had any other sickness or physical symptom to correspond to his regression? Speech problems get worse during a growth spurt, and after the spurt he would have more cognizance of his problem, more mature tools to express it. Here's to hoping that's just what it is.

[Dobela]

Amy, some speech therapists are reluctant to diagnose apraxia, even though apraxia may be what he's dealing with. Traditional speech therapy can be almost ineffective for apraxia (or take a LONG TIME to get there). I'd first do some reading to see if the speech problem is apraxia. If it is, PROMPT is amazing for it. The biting, hitting, screaming *could* be solely due to his frustration over not being able to communicate. I wouldn't rule it out. Are you doing sign with him? I'd get Signing Time videos and watch one with him every single day. You need to get some communication going. But truly, PROMPT is astounding for apraxia.

 

There is a strong overlap with autism spectrum disorders and apraxia. A spectrum child could be apraxic, but also the apraxia can so shape their personality that it *looks* like autism/spectrum. You improve the communication, and the behavior problems improve. So you can't say now which it is, not just on what you're saying. My ds was doing all those things and still bites or hits when he can't communicate. Even withdrawal and seclusion are apraxia behaviors that can resolve with improved communication.

 

The first SLP we went to said she couldn't diagnose apraxia till the child started (which obviously wouldn't help, since he couldn't talk) and would work on "communication". I felt like I was getting the worried mother routine. So then I found a PROMPT-certified SLP who diagnosed him with moderate apraxia, dysphagia, said he had ALL the typical symptoms, and that it was totally obvious. First therapy session with PROMPT she had him TALKING. not communicating, TALKING!!!!!!!!!!!!!!

 

Well I hope you can figure out what it is. Not to be morbid, but has he been vaccinated recently or had any other sickness or physical symptom to correspond to his regression? Speech problems get worse during a growth spurt, and after the spurt he would have more cognizance of his problem, more mature tools to express it. Here's to hoping that's just what it is.

Friends of ours have a son with Apraxia. The SLP didn't diagnose it but made a list of characteristics she saw in the child that were consistent with apraxia and sent it to the pediatrician. The pediatrician then sent to the child to a specialist in a Children's Hospital for a formal medical diagnosis. Once that happened the child qualified for a whole hour of speech therapy every day instead of just 90 minutes a week that was previously considered his maximum.

[Julie of KY]

I agree with the part about seeking out further therapy and considering private, but

 

LOSING SKILLS IS CONCERNING - I would take your child to a pediatrician and keep persueing this until you figure out what is going on. The delays, sensory issues, speech, etc are all things the therapists can work on, but WHY is he losing skills - this can be all sorts of problems, correctable or not, but you better work on finding out why because it's likely correctable and likely will get worse if you don't do anything.