Well here is the story..... our son Jacob turned 2 in November and he is the most amazing kid ever. (I am not biased at all!)    He is smart, funny, loving, beautiful and can be a little devil. :     He still isn't talking.  He babbles but there are no real words.   I have been told over and over and over and over and over again that he is "fine" ....... that "second children talk late", that "boys talk late" ........ BUT none of the answers (excuses) seem to feel right.  If I KNEW that he understood what I was saying, I think that I would feel more comfortable with his lack of expressive language but I just don't know if he does.  That is what is constantly worring me.  We have talked to our PAT parent educator and our peditrician.  We decided to wait until he was two to evaluate this further.  (i was just hoping he would just start talking and understanding and everything would all be ok).  

We decided to test his hearing and the follow up with a First Steps referral.  We tried to do a hearing test in the office but Jacob was having no part of that.  It took me about a week to call First Steps (for those who don't know it is a Federal program that offers early interventions).  I explained everything (and cried) to the referral person.  We are now in the mist of a variety of evaluations -- hearing, occupational and speech.  We have already had the OT eval and just had the hearing test done a Special School District (in the county) (by the way -- it is free to anyone in the county -- they have a sound proof room and  licensed Audiologists).  His hearing is fine (which is what I expected) but know I am still faced with the question -- what is going on with my little man?  If he can hear me, why doesn't he always respond?  Does he understand me?  How do I get him to understand?!? 

This is so frustrating and heart breaking.  (don't get me wrong -- I know it could be so much worse but the lack of knowing is maddening)

So has anyone else gone through this?  Advice? Suggestions?  anything....

Hello Kim

My little guy is just jabberin a few words. He's two also.

We have OT, PT and dietary from First Steps and will be adding speech tomorrow.

I understand your concerns. It can be very frustrating. At least we know that Cecil understands us He just don't really talk yet. Hopefully Regina (ST) will be able to help him start talkin.

I pray all turns out to be OK with your little guy.

Kim,

I know that you have been worried about this for a while and I'm glad you are taking the steps you need to in order to address your mom's intuition that something is not quite right. I totally understand that the fear of the unknown is the worst thing because you feel so helpless and lost.

I am by no means an evaluator, so please keep this in mind if you think I am jumping to conclusions. I have no reason in my breif contact with Jacob to think he is on the autism spectrum, but IF this turns out to be what the problem is, take comfort in knowing you are doing the EXACT right things right now. My 6-year-old cousin was diagnosed with autism -- finally -- after four years of all of us encouraging my aunt to get him tested/screened. It was a hard step for her to take because she didn't want this beautiful, sweet, fun little boy to suddenly have a label that defined him, but now that she has taken the leap and interventions have been put in place, he has made INCREDIBLE strides. This was a kid that wouldn't look you in the eye if he even said anything to you and after only a few months of intervention was standing on the fireplace hearth singing his ABCs and putting on a show for the entire extended family.

Anyway, I guess my point is that once you know whatever the problem is and know what you can do to work with it, things will get so much better. Whether it's autism or something else, finding out this early in Jacob's life can only be positive. Every child is unique and is who they are destined to be (I try to tell myself this all the time when my son's stubborness drives me up the wall). What an awful pointless world this would be if we were all homogenous! Please keep us updated on what you find out. We are here for you.

Liz

I am so glad to hear you are going thru all the tests because I know you have been worried about it too.  I hope all the tests keep coming back normal and he is just being stubborn like his mom....  I am here if you need some ears or a shoulder too.  Keep me posted and if I can do anything, don't hesitate to call!

Kim,

I have a few words for you to consider...I registered at STLMOMS JUST so I could share our story with you:

My DD Katherine was born 9 weeks early and so I was on the lookout for any developmental issues.  Long story short (and happy ending...she turns four next weekend and is reading, engaged and delightful when not screaming "NO NEVER" about taking a bath!) I also didn't buy into everyone telling me that the fact she wasn't talking was no big deal.  I actually pushed it and got her evaluated by First Steps at 18 months.  She was diagnosed as having verbal (oral motor) apraxia.  In her case, it all had to do with oral motor stimulation.  (In retrospect, we wonder if she had an infant stroke)...once she could work her tongue, lips, cheeks she talked a blue streak and hasn't quit!

Some things to consider: does he drool a lot? did he/does he have trouble nursing or sucking with a straw? does he mimic faces you make (a big O with your lips etc?)?  does he seem to stuff his mouth? choke frequently? can he make/mimic sounds that you make? P, B, D, OOO etc....

Now that you know he can hear you okay, have you tried little "tests" of his comprehension?  How about putting a car and a bear in front of him and ask him to give you the car?  Does he know his colors?  Show him two blue things and one green and then ask for one that matches (the first blue thing)...I assume as an early education person you would know to do this stuff...I hope I'm not coming off as knowing it all...

If he is ignoring you, avoiding eye contact with you and behaving overly obsessed with one toy or repeated activity then you worry about autism...

If you think he interacts well with you and others (sibling, father etc) and you think he is understanding you, then you have the tricky issue of pulling apart why he won't talk.  The Late Talker is a great book (by Lisa someone I think...)...google it and you will also come across an apraxia chat group online that was informative for me.

You're doing the right thing to get First Steps involved.  I highly recommend Melissa Huse with Kid Partners as a speech therapist--I've known her a long time and she works wonders with kids!  If she's not doing evaluations, ask her who a good person to evaluate would be...your run of the mill speech path may not be tuned in to an early diagnosis of apraxia.

And, to end on a positive note, there is always that possibility that what everyone is saying is true for Jacob and he is just a late talking kid. 

I'm  a school social worker by trade (in my previous life) and love talking special needs kids, so I'm happy to chat more with you on this...Good luck!

Kris

PS--some sites for you to check out:

www.cherab.com (the Late Talker site I mentioned)

http://www.speechville.com/advocacy-depot/letter-to-docs.html

Thanks for all the encouragement and support!  I really appreciate it.

After Jacob's Speech Eval, I got the call and he qualified for the First Steps program.  The results of the evals were SO hard to read.  He has a huge speech delay.  I did not handle the results well at all.  I am doing much better (now).  I am more focused on what we need to do now.  He will be gettting both SL and OT every week.  Since he only has 10 months in the program, I wanted to make sure he was getting everything he needed asap.  He has receptive and expressive speech delays.  He can match up puzzle pieces but won't identify body parts, colors, pics in books. It makes it hard to know what he knows or understands.  On top of that, he has sensory intergration needs.  I am not too sure what that means, still.  The therapist said that he fills his sensory needs by spinning in circles or shaking his head.  I just thought he liked to spin in circles.  I hadn't ever experienced this in ECE.

I will keep you posted on his progress.  Please keep my little man in your thoughts that he does well with therapy.  Thanks!!

Hey Kris -

Thanks for all the suggestions.  I am glad things are going well.  Jacob can suck through a straw and doesn't drool much.  He is still fairly oral.  He doesn't repeat sounds or imitate sounds or faces.  He does babble and has p,b.t,w sounds in his babbling.

As far as comprehension, that is hard to know because he won't do the tasks asked.  I know he knows what a dog is (we have one) but he won't point to one in a book.  I take his hand to point and now he is becoming more resistive to me doing that (he pulls his hand away). 

I'll check out the sites -- thanks again!

Hey Kim:

Thank you for sharing that.  I know it's hard to step out and talk about situations we have little control over, but it sounds like you are doing a wonderful job!  You are right there doing everything in your power to make sure you know what is happening to your little guy!  This is a great place to talk and get advice from other Moms. 

Kris and Kim I will keep both you and your families in my prayers, please keep us informed to what is going on.  You have friends here

Peace, Jana

OK, so I know exactly where you are coming from. As mothers we know our children better than anyone else. When something is amiss, we know it. At 6, my son Christian has just been diagnosed with Asperger's, a high functioning form of autism. I knew something was up when he was between 2 and 3. Unfortunately, and also thankfully diagnosis are not usually made at this young age. I had him evaluated by the head start program 3 times when he was 3, and they saw nothing. Needless to say now that he is 6 and in kindergarten and having a heck of a time they are kicking themselves for not catching it. And truthfully I would like to kick them too. I am not sayng that it is autism for certain with your son, all I am saying is that your situation sounds very familiar. Although my son talked your ear off every chance he got, still sometimes it seemed as if he didn't understand a word anyone said else to him. Very one sided.

So now he is having trouble and I could have had a 2 year jump on this. It infuriates me. So take comfort in the fact that you have already taken steps to helping your little guy. And you are getting the assistance he needs before he enters kindergarten and they won't look at you like you have failed him in some way because you didn't get him help. At least that is how I felt when they came up to me to "talk" about his behavior and they knew nothing of it.

I will say that I took his 3 year old little brother in for a screening recently too and they apologized to me for missing the issues with Christian. That made me feel a little better, I still wish he could have had those two years in the school system to ready him for Kindergarten. Maybe his situation would be very different right now. I am seeing some of the same behaviors in his little brother and they told me to bring him back next year again for another eval. I am going to take him back here in the next month or so though. I am getting uncomfortable with what I am seeing in Isaac. And I do not want a repeat of what I am going through now.

You see you learn a little more with every experience. Do not be afraid to ask for help, and if he needs it, don't feel badly for him. He is still your beautiful little guy, he is just more challenging than most. And whatever you do, don't let anyone tell you there isn't anything going on if you know there is. Thoses services aren't free, you've already paid for them with your taxes. Take advantage of them if you need them.

Good luck, and keep us posted.

I also looked into knights of Columbus Children's Developmental Center, unfortunately there is over a year waiting list to get in there. My son has an appointment with Dr. Rohrbaugh in Chesterfield at Child Neurology Associates (314-275-7070). I called last week and he ios seeing him on Feb. 6th. I was also having a lot of trouble finding someone to give a medical dx. so that Christian could preceive services and I called my Pediatrition and she got me into Dr. Rohrbaugh pretty quickly. If you cannot get an appointment in a timely manner, call you Ped. and have them call and they can usually get the appointment sooner.

I do still have my son's name on the waiting list for KC Child Devel. Center just because I feel like it would be a good idea to have that evaluation also. But try Dr. Rohrbaugh. I haven't seen him yet, so I do not know how he is, but he came highly recommended by my Ped.

Good Luck, Sarah

Anne, this link may be helpful to you. http://www.sensory-processing-disorder.com/

Kim and Sarah, and other moms looking for resources:

I encourage the KofC people--I have read their reports on families from my old workplace and they do an excellent, thorough job.  It is a long wait...Here are a couple of other places I have heard about (do not have first hand knowledge of them, so don't take as an endorsement)

www.makeitclick.org offers lots of good stuff--babysitting nights, therapy, consultative services, help with IEP's, behavior helps etc.  They offer a multisensory room...check it out for more info.

also, Good Shephard School is somehow affiliated with WashU (Good Shephard is not near the university though) and they offer child care plus therapies as well, including sensory integration.

www.goodss.org

Some fascinating books I've read, from parent's perspectives,include "The Sound of A Miracle" and Dancing in the Rain by Annebel Stehli.  Not sensory integration per se, but interesting kiddo stuff...The Occupational Therapists are typically the ones who will work on the sensory issues with a kid, so you are on the right track!

Good luck, remember I'm happy to answer any questions to the best of my ability.

Kristin

Hello, I just wanted to say that I have been EXACTLY where you are. Your story sounds exactly like mine. My beautiful son is now four years old (five in March) and was diagnosed with autism at the age of 25 months. I am so glad to hear that you are taking all the right steps, good for you for listening to your "mommy gut feelings" and not to what everyone else was telling you. If you ever have any questions or need to talk please send me a message. I love sharing our story and trying to help others.

I know how everyone feels. Heres my story about my son Ashton (now 2 1/2 yrs old)  at age 18 months still no talking. tantrums all the time, head banging, rocking  back and forth, did not like baths, never slept through the night, amongst all the other things.  Finally went back to his ped. and had him eval. for autism.  He had all the signs and symptoms but the dr. said it is too early to diagnos right now.  Been to lots of drs. at Cardinal Glennon and is still on the waiting list for K of C Center.  We started early intervention here in Illinois 8 months ago He gets ST 3 times a week, DT once a week, OT 2 times a week, Nutrition once a month and BT once a week.  As of right now all he does is babble but that is better that nothing at all.  He was dx. by the psychologist as having mixed expressive/receptive speech disorder.  We have started him on a gluten free casein free and dairy free diet and since we have done that the behavior is much better, he is sleeping through the night not stimming on toys as much and has said some words but you still can't understand him clearly.

Just keep working on it and he should come out of it ok

Kim,

I am experiencing the EXACT same thing as you right now and let me tell you it hasen't been easy!  My son was born in April of 2006.  While I was pregnant with him, I discovered that I had a blood clotting disorder that caused my sons umbilical cord to clot resulting in lack of oxygen to the brain.  I was immediatly put on bed rest and monitored daily.  Around 36 weeks, they found out that he had his umbilical cord wrapped around his neck twice so, they took him early.  He was 4lbs.  He was born with two holes in his lungs and stayed in the NICU for several weeks.  He is now two, and is experiencing what your son is as well as more developmental things.  He is not talking, whines frequently for things he wants and gets easily frustrated when we don't understand him.  He was evaluated in October for First Steps and was inelligable.  We also decided to give it time and thought that is he wasen't talking by the age of two that we would explore our options and get him the help he needs.  We have been re-assured several times that he's not autistic, but, of course as a mother, I still worry.  We recently re-applied for first steps and just became elligable.  He is now seeing a speech therapist and a developmental therapist and we are in the process of setting weekly visits!  They give us lots of tips on how to stimulate his mouth to work his muscles and such.  If you need any tips or haven't spoken with any therapist, I can give you some.  Hopefully this works and helps my son get on the right track! I understand what your going through with the sadness and constant crying.  No mother wants their child to be behind their peers.  If you could keep me updated and I will do the same I think we can really help each other! I know I could sure use someone who understands what it feels like to talk to!

First of all, thank you all so much for sharing your stories and words of encouragement.  It really means so much and it helps to know we are not alone. 

Secondly, I thought I give you a quick update on Jacob.  He is still receiving OT and SLP weekly.  I am assured (often) that Jacob is doing well (and improving).  He was recently given a PT eval and will start receiving PT monthly.    He has a hard time during the sessions mainly because he would rather do his own thing than do what he is asked.   The BIG news is that he has said some words.  He says "go", "hi", "wee" consistently.  He has said other words sporadically.  He is more attentive and listens better to directions.  He is giving tons more eye contact and smiles all the time.  (he puckers like a fish to give kisses too)   He still has a long way to go but he is really making progress. 

The running joke in our home is the moment he says "MOM", I will stop all therapies because he is all better!!

We have a meeting next week wtih SSD (which is hard to accept).  BUT I know that he still needs services and it will help him in the long run.

Thank you all again for all your support and keep sharing your stories.  It really does help!! 

Hello everyone,

Your struggles are near and dear to my heart because I consider Kim a very good friend of mine. When we heard about Jacob we were all surprised and are continuing to pray for progress and become more educated about it. I apologise that I don't understand all the acronyms for different therapies, but I am very to happy to hear about good news and progress. I had a question and it was from a post by Stacy.

She mentioned that :

"We have started him on a gluten free casein free and dairy free diet and since we have done that the behavior is much better, he is sleeping through the night not stimming on toys as much and has said some words but you still can't understand him clearly."

What I was wondering is if the "gluten free casein free and dairy free diet" is part of Chelation Therapy? I've read a few articles about it and I was wondering if anyone out there is going through it with their kiddos and what kinds of results they are seeing. This is an older article about it:

http://www.healing-arts.org/children/holmes.htm

There are alot of varying opinions out there about whether or not it helps and I was wondering if anyone has had any experience with it?

Sincerely,

Sarah