27 month old son not walking/talking/gestures - HELP

Gabe - posted on 10/27/2015 ( 3 moms have responded )

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Hello everyone, I realize I’m not a mom but I do have an amazing wife who is struggling at home with raising our 27 month old son, Robby, while I am deployed in the service of our country.

Our story: Our son Robby did experience a stressful birth (umbilical cord around neck) and experienced a dairy allergy early on (Dianna had to omit dairy from diet for 1 year) and has had difficulty sleeping unless attached and breastfeeding. We noticed delays in weight gain and head circumference in the first 6 months but he eventually showed enough progress to avoid a failure to thrive diagnosis. At about 11 months we began early intervention, physical therapy, and occupational therapy because of concerns that he was not crawling or babbling like a normal infant. At about 20 months he displayed minimal advances (could now crawl but not many gains elsewhere) so we reassessed his providers and replaced his PT, pediatrician, and neurologist in favor of personnel we felt were more willing to assist us with Robby’s development, the ones we fired seemed content to wait and did not convey the level of concern we felt was appropriate. We have had blood tests, an MRI, genetic testing, and he is due to have a thorough hearing examination next. Despite our efforts, we have still yet to have a diagnosis of what it is that afflicts our son.

As I mentioned in my introduction, Robby is now 27 months old and has yet to walk (without being prompted), does not speak, does not point or gesture with hands, still has trouble sleeping through the night (wakes up often after only two hours & rarely sleeps more than 6 hours), he has introduced a scooting movement for short distances, and does climb on everything. He appears to comprehend what we discuss with him (able to retrieve objects, look for sister, and convey empathy), has a great sense of humor, does well with social interactions, eats everything you put in front of him (though he isn’t chubby, would describe as athletic if he were an adult) and often initiates various types of affection (hugs/blows kisses/smiles with eye contact).
I have read on many boards that people have had children with similar situations but have yet to find any post where someone has come back to update how their child is doing presently. I am looking for a couple of specific things from this community:

1. Input from people who have had a child with similar experiences and are beyond the current age of my son.
2. Input from people who have had a child with similar experiences and have actually received a diagnosis.
3. Resources (websites/organizations/communities) in southern California
4. Any and all words of encouragement are welcome I only ask that you PLEASE do not tell me that he will “get there in his own time” or that “boys are just slower than girls” I hear that often from people with healthy children all of the time.

Thank you all for allowing me to join your group (despite not being a mom), Gabe

3 Comments

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Ev - posted on 11/08/2015

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I have not had a child with these kinds of things going on. I can understand from certain extent what it means to be told the child will do it in their own time and boys are slower than girls. I have worked with special needs community for over 10 years mostly with children in a preschool setting. You never mentioned that he was also getting speech therapy along with the others. If he has not, why is that? Speech therapy is more than just learning to speak correctly and so on. My son had other delays and learning issues growing up and he had all three at one point or another though he could communicate quite well by the time he was five years old. He was first thought to have had ADD or ADHD and then at the age of 11 he was diagnosed with Autism but even to this day I still do not see it as having been his issue at all. I was wondering what all the tests like the MRI or catscan had found for you. Did they discuss brain development too? What sorts of resources besides the therapies did they refer you to?

Oh, and off the subject but important to what you are doing: Thank you for the service you provide this country in defending it and upholding our freedoms. I am the daughter of a former Army man who served in Vietnam. So I know the importance any service member is providing. I just hope that maybe someone can give you the answers you seek.

I wish your son the best in his development over the years and want you to know that despite the challenges he will face he can become whatever he wants to be and can overcome them with the love and support you and his mom will give him and that of the rest of the family you guys have. I know how hard it is for a child to have something holding them back and to have to work so much harder for it but the end results are amazing when the child finally gets past the difficult things they have to deal with. I saw it with my preschool kids and then my son who is now 18 and graduated with a 3.102 from high school in May. He got past his difficulties with hard work and the love of his family....so I know deep down your son can too!

Gabe - posted on 11/08/2015

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Megan, I haven't been home for about 3 months now and I only get so much face time with the little guy so these observations may be off a little. He mostly communicates via grunts and cries, he will definitely let you know with various cries if he doesn't want you to do something/take something. And if he want's help he will cry to get attention while attempting the activity then grunt when you acknowledge what it is he's crying about.

When I was home he would love to toss balls back and forth with me which he did often initiate by grabbing the ball and holding it up as if he were going to throw it. He's brought over books to us before but mostly I think he enjoys trying to turn the pages, though from what I see during my facetime sessions he is getting use to sitting down and actually listening to the stories.

To summarize, I believe he communicates via crying(sometimes a grunt replaces the cry) while attempting to demonstrate what it is that he needs; just recently my wife mentioned that though he "cries" a lot he does not shed tears. After hearing this I could not recall a single time I had ever seen my son shed a tear. Not sure if that was significant but we are looking into that now as well.

Thanks for your interest in my family, wish you were closer to California.

Gabe

Megan - posted on 11/06/2015

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Gabe, in terms of Robby's communication, how does he express his needs? I'm a SLP and own a Private Practice (www.TeamChatterboxes.com)

Please be mindful that communication can be present in the form of pointing, gestures, sounds, jargon, eye contact and body language. We use a program by Hanen called It Takes Two to Talk. Here's the Hanen website:http://www.hanen.org/Guidebooks---DVDs/P...

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