I need information re: non-verbal toddler

[Daydreamer64]

Our 27 month old toddler ( premi by 4 weeks, blew a lung and was vented- no sign of a brain bleed ) is almost non-verbal. He has and uses maybe three words on a daily basis. He understands everything, and I mean everything, that is said to him. He follows 2 and 3 step orders, mimics sound and actions beautifully, and according to the doctor, is cognativily sp? at and above age requirements. He does seem to lag with puzzles, coloring, and isn't really interested in reading with us. He shows no interest in riding a kiddie car, tricycle, or push car - he climbs like a monkey and can roll/throw a ball. My older kids and my younger sibs, I'm the oldest of 18 kids, and the kids that I kept in my home daycare, all were way past him at puzzle working, coloring, and riding toys by this age. He also, compared to the other kids, has very little attention span. We do not allow him to only point to get things, but work with him to at least try to make sounds relative to the word that we want him to say.

The problem is that he "talks" all the time but only makes one sound- especially when he gets upset, he trys so hard to say words but all that comes out is awwww, always the aww sounds.. He is not tongue tied. He can blow horns and blow bubbles. He can razberry and chews and swallows just fine.

He says da for daddy, mama, and braber for brother. He was using at least 15 words before his 1st birthday- he's lost them all. He has no physical signs of autism, no hand flapping, loves to make contact and be held and kissed, he will also take your hand and lead you to his trains and toys to play.

He has had his hearing checked by an audiologist- he cooperated fully and they said his hearing is perfect and there are no signs of ear troubles- they ran several different tests. Our ped referred him to speech therapy and our insurance has denied it. We are at a lost as to what to do.

So, we started with the Signing Time videos about two weeks ago and he is learning his signs and using them at a great rate of speed except- he's signing not speaking. Our ped saw us last week and he signed "drink, please, and thank you" during the office visit while she was in the room- we were excited for her to see his progress.

She told us not to teach him sign language as he'd never learn to speak. I was floored and then so angry. The child is trapped in his head, can't communicate except for pointing, pitching a fit, or yelling to the point of crying and she doesn't want him to learn any other way to communicate? Am I wrong for feeling that it is better to give him an outlet then let him scream and cry because he can't get his thoughts/wants/needs clear to us?

She said that she wanted to refer us to Early Intervention. I used to work for the school system and am not really wanting to get involved in that mess.

Any advice would be welcome and thought through. I am worried as I can see when he is around other kids his age, they are saying two word phrases and are quite verbal. I am not one of those Moms who want their toddlers to speak in three languages and do high school math before they are three years old- I just want my DS to be able to communicate at his age level.

We are not rich and cannot afford speech therapy oop- I don't know where to turn for help.

 

[alizesmom]

I belong to a board where the kids are trached. Many have been taught sign language and still go on to speaking once the trach is out with no problem. I personally would teach my toddler the sign language. He needs to communicate. Karen

 

[scottsod]

my son was not talking for a long time. we thought it was his ears and in part it was, for the first 18 months of his life for him it sounded like he was under water all the time. we got him tubes and that fixed it. but we had to teach him how to hear again. we did that and then found out that it probably wasn't that he couldn't hear at all it was something else. so we wtaound up taking him to a sign language class through his early intervention and it worked wonders. NOW he is getting speech 3 times a week because he was diagnosed with apraxia which is a processing disorder. that meaning he understand everything like your son but his brain cant get his mouth to physically say the word. there is nothing physically wrong with him he just cant get it, but its getting better.

bring him to a neurologist so they can test him for apraxia. it might be a long shot but my son does everything your son does and he gets so mad when he can't tell us what he wants. now that we know it has gotten him on the right path.

no offense but the fact that you don't want to "get involved" in early intervention or not should really not be a issue. it is a great tool to get your child the therapy that he needs then when he turn 3 gets him into the school system and then they take over with the everything, at least that is what happens in my town. do what is best for the kid.

as far as the sign language totally do it, use what ever you need to to help him talk to you. the doctor might say not to use it but 1 the doctor doesn't live with you and your kid so he/she doesn't really understand, 2 i am sure he gets very mad when you don't understand him and signing will cut down on the flipping out, 3 as he learns the signs he will learn the words too, you don't just stop talking to him every time you use the sign for more you say the word more, you say thank you and milk and cup. you just don't sign, that is what doctors forget.

we got all that from the doctors and family that didn't understand and didn't talk to the speech therapists but the signing works. do what ever it takes. even go as far as using pictures and have him point out what he wants each and every time using the word over and over again. with the pictures not only will he learn how to say the words but his reading will advance too.

because of the signs he was able to tell me what he wants and still now that he is using the words he still uses the signs like more and thank you. buy a signing book for kids and signing flash cards they help a lot. look into a class through early intervention or even through a local school that deals with the hard of hearing. i know its a lot to take in but all this stuff together has really helped my son a lot.

 

[tweedlemom]

My son was also non-verbal. We taught him sign language, involved Early Intervention and also used PECs (picture exchange communications system?). He's doing great now! I know many parents who don't want to use signs for fear that their child will rely on them too much and avoid using spoken language. But if you pair the sign with the word ALL the time, chances are both will start to be imitated. If your insurance won't cover speech therapy then definitely involve early intervention and the school district so that your child may be eligible for free services. It is a long road with tons of paperwork and meetings, but if it means services for your child, it is worth it. Good luck!

 

[benjackal]

Hi there,

I am a pediatric SLP and have worked with many "late-talking toddlers" as I specialize in the birth - 5 population. I see no negative impact for augmenting his vocal attempts at communication with sign language. Your child shows a desire to communicate and that is the important part. If you are noticing that he uses a limited variety of sounds, the first step is to expand his inventory of sounds, not words. If he is into animals, a great place to start is to play with him modeling different animal sounds. Break up the sounds into as small of pieces as you can. "moo' is harder to do than "oo", for example. For these little guys, we often have to build the number of sounds they can say before we can focus on building words.
I also am from Canada, so I don't understand how your insurance can deny speech therapy. Is there any recourse you can take - have your doctor advocate for you?
Even though Speech Therapy is expensive, getting an assessment from one who specializes in preschool kids would be worth it. She/he could give you specific things to work on - like a home program. You wouldn't have to commit to regular appointments, I'm sure.

Best of luck to you!

p.s I have never met a child who chose to continue with sign language as his/her verbal skills improved. Typically, as they get more spoken words in their vocabulary, the sign language should slowly disappear. And often, the augmentative means to communicate, like signs or pictures, encourages them to attempt more. That's just my experience.

 

[Daydreamer64]

Thank you all for your advice and guidance. We are speaking as we are signing and giving lots of praise when he makes any kind of sounds as he attemps his signs.

scottsod and others, I didn't take the time in the last post to give you all a full picture to explain what I ment about EI.- I've seen it do wonders but I also know what it takes to participate. It wasn't the EI so much but the time it takes. If there is an available way to help DS without having home visits and so on, I would like to follow that path first.

We would and are doing everything that we can for our sons- we have never been laid back parents and do what is needed for all of our children. My older kids are special needs too, the oldest 14 yo, has Chronic Granulomatous Disease- his immune system can't fight bacterial or fungal infections without extensive medical intervention. CGD kids also have tumors that grow on their organs- heart, lungs, kidneys- you get the picture. This disease is usually terminal. There are loads of doctor appointments, as well as, daily medical care routines that I have to take care of, like doing Cardio Pulmonary Therapy for his lungs, along with balancing 17 doses of medication with meal times, between food doses, and during the night doses for this child.

My middle DS 11yo, is an insulin depend. diabetic. Not one bite of food or any exercise can be taken for granted. He has to do finger glucose checks at least 6 times a day as well as any time that he feels off. He also takes insulin with each meal and snacks and before bedtime- all of which I am in charge of double checking and verifying insulin needs.

All three kids are asthmatic and have skin problems which just add in the creams and nebulizer treatments that have to be squeezed into our day somewhere.

My hands are full.

I am always strapped for time and just want the darn insurance to pay for evaluation and speech therapy to start the ball rolling for DS#3.

EI is great- I know that, but they have to come to my home and I have to do loads of paper work..... I am just overwhelmed right now and wish for just once, that the medical community back the parent up and just do their job instead of us having to beg and plead and jump through hoops to get the help that we need.

We will have to do EI if we can't get anywhere with our appeal. My ped. is the one who said we had to have ST- I agree as I can see there is a problem.

The last issue with EI is not really EI but after EI with our school system. They have just lost their accreditation from SACS. Our local school for Hearing Impared, special needs, and IEP kids is two blocks from our house. I used to sub there and both of the older kids have gone from K- through 5th grade graduation in this school. It's a regular ele. school with special needs classes. All of the county's special needs kids are sent there starting in their 3rd year. The teacher's were to sign their contracts this month, I found out that most of our experienced teachers are not returning to the school as they lose benefits and so on without accreditation.

I may have to use EI for this year and then look for other programs. I do not want DS in the 3 yo class. This system lumps all of the sn kids together into two classrooms. They put kids with major medical needs, some physical and some mental disabilities, all in the same classroom. There is no way that an academically normal child will get any kind of help in there when so many of the other kids need full time physical care. All he will do is sit there and stagnate. I have worked in these classes for days at a time and can see that this was not working for some of the kids and said so- I was told that there is no where else for these kids to go so they do the best that they can. If DS proves to be of normal academic abilities, then this is a waste of time for him. If not, then it is what it is and we work with him.

I take hope in the fact that your kids are able to communicate with the use of alternate devices- I am following my heart and will continue to teach sign language. I am especially hopeful when I read that the kids are talking in time. We are waiting for the phone call form EI- the ped said that she contacted them.

What rights do we have as parents if we feel that a recommended class ( like our local school's sn class ) or therapy is not the right fit for our child? Are we able to use the therapy for a reasonable amount of time and then decide to withdraw our child- will it be seen as neglect for the child's wellbeing?

We are concerned for DS and want the best care and help available for his needs, however, we still want to be able to say, "No, we don't want to do that with DS." Any experiences with this kind of situation? TIA

 

[MarieS]

At age 3 your son can be eligible for speech services with the local school district and you do not need to attend the preschool class to access these services. Good luck with the insurance appeal!

 

[benjackal]

Daydreamer64, your hands are definitely full. I also have more than one child with special needs, and can understand the challenges you face.

I have also had former clients move to the U.S. and be excited that their late-talking toddler could access services in the community. They, too, opted out of the local program, disappointed that all the special needs kids were grouped together, and their otherwise "normal" toddler just didn't seem to fit in with the other kids. That is definitely your call, but know that others have felt the same way too.

Modeling of speech sounds for a 27 month old child can be done during everyday activities like meal times and bath times and can be worked into your regular schedule. Also getting him around peers closer to his age - playgroups, for example - may help him expand his skills.

Best of luck to you.

 

[KirstenB]

Daydreamer, here in Virginia, there isn't much paperwork for EI. When our daughter who's 2 1/2 years old entered the program at 11 mths, a coordinator came out to our home. She asked me questions and filled in all paperwork for me. This was after the team of therapists came out to see if Zoe qualified, which of course she did. I've had virtually no paperwork since then. When her 6 mth and annual IFSP reviews come up, the therapist and I go over goals together and I sign the form, Voila!!!

I know some folks don't like other people in their homes, and I respect that, if that's an issue for you. Zoe has a few words. Her EI Speech Therapist has been working with her for about a year. She encouraged us to use sign language with Zoe. She said it serves as a bridge to spoken language, as opposed to a hindrance.

IF you're truly opposed to EI, you could consider going to a developmental ped, or going through your local school system. Here, children as young as 2 can go to the public schools to get services as an alternative to EI. Of course, you'd have to drive him to the school to meet with the speech therapist, but it gives you another option.

Obviously you're concerned about your son. I hope you are able to find some answers.

 

[KirstenB]

OP, I must have missed your follow-up reply, please disregard what I wrote. Our school system is small, but at the preschool, there are 4 special ed classes, so the kids are able to be better divided than what you describe. I'm sorry about all the issues your early childhood education program seems to have. I'd be frustrated too.

 

[Forevryoung]

I have the research of the meta-analysis done that shows that sign language (and other forms of "non-speech" communication) do NOT prevent the development of speech and actually in a large percentage of the children, promote speech.

I applaud you for promoting sign language- it's wonderful that your child is picking up on it so quickly. Definitely keep at it!

If you want it, PM me your email address, it's a PDF

 

[Talking Hands]

Our 27 month old toddler ( premi by 4 weeks, blew a lung and was vented- no sign of a brain bleed ) is almost non-verbal. He has and uses maybe three words on a daily basis. He understands everything, and I mean everything, that is said to him. He follows 2 and 3 step orders, mimics sound and actions beautifully, and according to the doctor, is cognativily sp? at and above age requirements. He does seem to lag with puzzles, coloring, and isn't really interested in reading with us. He shows no interest in riding a kiddie car, tricycle, or push car - he climbs like a monkey and can roll/throw a ball. My older kids and my younger sibs, I'm the oldest of 18 kids, and the kids that I kept in my home daycare, all were way past him at puzzle working, coloring, and riding toys by this age. He also, compared to the other kids, has very little attention span. We do not allow him to only point to get things, but work with him to at least try to make sounds relative to the word that we want him to say.

The problem is that he "talks" all the time but only makes one sound- especially when he gets upset, he trys so hard to say words but all that comes out is awwww, always the aww sounds.. He is not tongue tied. He can blow horns and blow bubbles. He can razberry and chews and swallows just fine.

He says da for daddy, mama, and braber for brother. He was using at least 15 words before his 1st birthday- he's lost them all. He has no physical signs of autism, no hand flapping, loves to make contact and be held and kissed, he will also take your hand and lead you to his trains and toys to play.

He has had his hearing checked by an audiologist- he cooperated fully and they said his hearing is perfect and there are no signs of ear troubles- they ran several different tests. Our ped referred him to speech therapy and our insurance has denied it. We are at a lost as to what to do.

So, we started with the Signing Time videos about two weeks ago and he is learning his signs and using them at a great rate of speed except- he's signing not speaking. Our ped saw us last week and he signed "drink, please, and thank you" during the office visit while she was in the room- we were excited for her to see his progress.

She told us not to teach him sign language as he'd never learn to speak. I was floored and then so angry. The child is trapped in his head, can't communicate except for pointing, pitching a fit, or yelling to the point of crying and she doesn't want him to learn any other way to communicate? Am I wrong for feeling that it is better to give him an outlet then let him scream and cry because he can't get his thoughts/wants/needs clear to us?

She said that she wanted to refer us to Early Intervention. I used to work for the school system and am not really wanting to get involved in that mess.

Any advise would be welcome and thought through. I am worried as I can see when he is around other kids his age, they are saying two word phrases and are quite verbal. I am not one of those Moms who want their toddlers to speak in three languages and do high school math before they are three years old- I just want my DS to be able to communicate at his age level.

We are not rich and cannot afford speech therapy oop- I don't know where to turn for help.

Keep up with the sign language. It gives him a way to communicate. If he is going to talk he will. And as he talks he will probably drop the sign language. That a child will not learn to talk if he signs is a myth perpretrated by uninformed doctors and audiologists.
You might want to have a neuro check to see if he has auditory processing disorder.

 

[Daydreamer64]

Thank you for all of your supportive information. I'm feeling a little better today about the whole situation. DS has added two more signs this weekend and we are thrilled. I have done mega research and agree that using sign will not stop or hinder him from learning to speak.

It's not that I have issues with anyone visiting my home so much, as I have a hard time finding time for uninterrupted appointments- they have to understand that I am on a very strict schedule and will need to interrupt our interview with meds doses and so on... the same comes into play for st at the school except I can drop DS off and run home.

I am encouraged to read that the paperwork is not as much as I had imagined it to be. I'm also relieved to hear that DS can get ST at the school and not have to be included in the sn pre-school class full time, I hope this works the same way for us.

 

[tweedlemom]

You sound very overwhelmed right now. Take some time to look at all the info and make a decision when you're ready. You're doing a great job! We're here for you!!!

 

[OneLittleSpark]

I've never been through this situation myself, but just wanted to offer you some hugs and encouragement . Also, just to give you a bit of hope, I have a friend who had very few words until he was about five, though they could find no cause for his delays. These delays haven't set him back, however; he graduated last year with a BEng in Mechanical Engineering and is now studying for an MSc. Rather than being short on words, he can talk the hind legs off a donkey now!

Remember to look after yourself as well as your boys.

 

[mechurchlady]

Sending you hugs and prayers.

Communication with you child is most important right now. At my church two were two children. One was the daughter of a cousin of a church member. She learned to sign very young even though she could talk a bit. She was able to tell people what she wanted, what she needed and where pain was. The other child was very disabled and could not sign or talk. He could not tell his mom that he was hurting or uncomfortable. He could not tell her what scared him or made him happy.

The little girl's parents and family were told she would be a vegetable but the last time I saw her she was almost five, scooting along with a walker, signing, and about one year behind other children. I believe it was though faith and prayer that she got this far. Also her auntie kept her active mentally with games and toys.

Another big hug and more prayers.

 

[Daydreamer64]

Thank you for all of the hugs and well wishes. Taking care of my kids is a full time job with no breaks even at night.

Just last night my diabetic DS came to my room and said he felt funny- sure enough, his glucose levels had dropped into the "danger zone". I gave him a snack and checked him again in 15 mins and his blood level was good again.

Then the baby woke up coughing- the neighbor was burning trash all day yesterday, and as you might imagine, that set off our allergies and asthma. So I had to get out the nebulizer that I had just cleaned and put away from using it for his evening pulmicort treatment, to give him a breathing treatment with albuterol to help him. He wasn't in the mood to be held or wear the mask so it was a battle for about 10 mins. After all of the crying and movement I'm sure that he got lots of meds into his lungs! When he inhaled to cry I made sure that the mask was over his mouth so he got the meds.

Anyway, thanks again for making me feel like I'm not alone.
To quote OneLittleSpark : I hope DS will be able to talk the hind legs off a donkey after this is all said and done!