We're worried about the boy

For some time now, we've been worried that Simon doesn't speak. At 28.5 months old, he knows less than 10 words. Back in December, we took Simon to a walk-in speech therapy clinic where we were asked a bunch of questions and we were handed a form to fill out and send to the local children's hospital. The hospital would contact us and Simon would begin speech therapy. The only problem is that the wait to get an appointment through the hospital is around 6 months - which could take till May of this year. Last week, the hospital called and asked Pablo a bunch of questions about Simon and asked if we want him to go through behavioural therapy along with the speech therapy. Behavioural therapy would help give a diagnosis as to why Simon isn't speaking and autism was mentioned as a possibility among others. This hit me like a ton of bricks and ever since, I have had a gut feeling that I can't seem to shake that Simon might have some form of autism.

I googled autism and read all sorts of sites that listed symptoms and was able to say yes to some of the symptoms - not all but some. I'm really hoping someone will prove me wrong and tell me that he is perfectly fine - just not ready to talk yet.

I don't want anything to be wrong with my boy. I've had a hard enough time making it through the last year dealing with all that is wrong with my husband (ie. brain tumour, hernia, bladder issues, etc.) but now my boy!?!?!?!

I'm confused and concerned and heartbroken and I don't know what to do.


  1. I'm going through the same thing with my just-turned-two-year-old. I'm American, so we're working through our county and state programs to try and get him some help. I worry about Autism all the time with him, but the people we have met with don't seem to think he'd be on the spectrum. I think because it's such a hot button diagnosis right now, many people are required to mention it, or are just more apt to.
    My son has about 6-8 words, throws the most epic of tantrums that last forever, is weirded out by other kids, and isn't big on affection. It's hard, very hard. So I know how you feel.
    Hopefully you get some answers soon. And you know what, in the end, don't let it bother you. Simon is still your son, and a word on a chart won't change your relationship with him or his with you. He'll still be your boy, and you'll still love him ferociously.

  2. Take it a day at a time. Your son is just your son, not some disability or developmental delay. One of our boys learned to read in Grade 3 (no interest until then). Another was copying letters at age 3 (he liked to copy shapes, not that he was a genius. Smiles.) We let them develop at their own pace, not according to others expectations.

    That said, docs and therapy may help in this academic culture where children are expected to speak and read. I'd pursue the options you have. In an agricultural culture, probably few would notice his delay, and would let their kids grow up and catch up at their own pace.

    We have a grown child with a disability that does not define her: she's happy, productive, and manages her disability with grace and a tender heart toward others. Love you son, no matter what others say is "wrong" or "other". He's God's gift just as he is.

  3. Aww, I'm sorry to hear this. :[ Maybe he just isn't ready to talk yet. I have a niece who didn't talk until she was later into her toddler years, and there's nothing "wrong" with her. And even if Simon is diagnosed with something, it doesn't change who he is to you. I know you already have your hands full with all of the husband's medical conditions. :[ Sending positive thoughts your way.

  4. I have a friend who went through the same thing, at 2 1/2 her daughter was barely speaking at all and they ended up teaching her a little sign language to help out. Eventually they had a speech therapist that would come to her house and when they moved to a different state in 2009, she started taking her to a school where there was a class with a few kids her age and she had a teacher and everything. Anyway the point of my story is when they left in August 2009 at almost 3 years old she was barely speaking and when I went to visit them in January 2010 she was talking up a storm. Don't stress too much about whether he is autistic or not because he may just be slow to talk, every kid is different! I think it's funny how "the experts" say "at this age your child should be doing this" well it doesn't always happen the way they think it should.

  5. Gosh. I'm thinking of you. I have no answers beyond "stop Googling." Every kid/person out there likely has some symptoms on the spectrum so don't freak out yet! You will do a great job getting him whatever he needs to be the best Simon he can be. And that it is a pretty great Simon, indeed!

  6. Oh sweetie, hang in there. You know that Gabe was a really late talker too. I saw some videos of him at Christmas 2009 and he was grunting at us a lot instead of speaking. He would've been about 28.5 months at that point. And I am not kidding you but he SERIOUSLY talks all the time now. In paragraphs. Novellas even.

    I think it's probably extra hard to have him not talking after having Isabella--girls are so much more verbal than boys on the whole. Try not to worry. (I know, it's stupid. It wouldn't work with me either--I'm Anxiety Girl! Able to leap to the worst possible conclusion in a nanosecond! I even have a tshirt that says that--but I digress.)

    Take all the help you can get--put him in the program and then wait and see. No matter what, he's still sweet Simon, full of love and joy. Try and take it easy on yourself, sweetie. Hugs.

  7. Hi. A friend shared your blog with me today as she knows that my 2.5 year old is speech delayed as well. Rule #1...step away from the computer. Rule #2...patience. I don't know what you'll find with your boy but ours didn't begin speaking until he was 31 months old. He has therapy for it 3x week and also have a behavioral therapist 3x week to help with the fact that his lack of speech causes frustration and some difficult behavior. Just get as much help as you can as early as you can and that will make all the difference in the world.

  8. i'd like to echo what everyone else said: stay away from google. as you said, autism is a spectrum... this means that everyone is bound to have some of the qualities associated with autism (while on the flip side, bound to have some qualities not at all related to autism). i'm a phd student studying cognitive psychology and we regularly use what's called the 'Autism Spectrum Quotient Questionnaire', which is designed to measure autistic tendencies in non-autistic adults. virtually everyone in our lab scores much higher than average, but none of us are disordered (and some of us are pretty nice people, too!). my point is that googling features of the disorder is a great way to provoke anxiety attacks, most often unnecessarily.

    it's a shame that our culture stigmatizes those on the higher end of the spectrum while valuing traits not associated with autistic tendencies. we don't think of someone who just 'doesn't get' math but is amazing in social situations as disordered, but somehow someone who has excellent mathematic aptitude and little interest in people is somehow 'wrong'.

    for sure get all the help that's offered, but i'd encourage you to focus on what everyone else is saying: developmental milestones are approximates and everyone is different. because your son doesn't develop key behaviors right on time doesn't mean it won't happen. even if it turns out that autism is an appropriate diagnosis, it absolutely doesn't rule out the possibility of your son having a very fulfilling, happy life. having parents that care about him as much as i'm sure you two do can make a world of difference.

  9. Have you thought of getting your little man's hearing tested? My eldest boy had a series of ear infections and needed gromets, after he got them and a few months of speech therapy he was speaking fine and now never stops! Some kids have a condition called glue ear that makes it feel that the child is hearing muffled, like being underwater, gromets make a huge difference. Just a thought, in case it's something as simple at that. I have another little boy who has special needs and at 4 and a half doesn't talk yet, my youngest could say the whole alphabet at 2, all kids develop at different rates and all are blessings and equally wonderful :-)

  10. I pray with you and for you at this really stressful period. I have followed this blog for about a year.Please note that the diagnosis will not change your son. Your precious relationship with your son will remain. the diagnosis does not mean that there is something wrong with your son. he is who he always has been a treasured, valued , loved and loveable son. Anything that you learn now can only assist you add value to your relationship with your son.

  11. dear Julia,

    oh no, I'am so sorry to hear this! But the cousin of my husband didn't speak since he was 4 years old. No words! And he didn't walk since 4 years old. All people said that he is disabled. Today he is a very intelligent man and leads his own firma. Don't stop to believe in your son! I wish you many many power for the next time an wish for you all the best!

    I hope you understand my bad english! :o(

    Many hughs

  12. Thank you so much everybody for leaving your comments and personal stories! And I promise to stop googling. I'm just not very patient when it comes to our health system and waiting. We've spent our last year doing a heck of alot of waiting for Pablo's medical issues and I thought I could maybe get a head start by googling what could be wrong with Simon.

    Total deja-vu though wondering what's wrong with Simon because he was miserable the first few months after he was born. It took awhile but finally he was diagnosed with a hernia (like father , like son). He had surgery to fix it when he was about 2.5 months old. Perfect health ever since.

    We're going to do whatever we can to help Simon get over this 'hump' (not sure what else to call it). I'm just so anxious to hear him talk one day because I know he has alot that he wants to tell us. I love him unconditionally and with all my heart and that will never change.

    We've been asked numerous times by doctors if he seems to be hearing okay and I don't think he has a problem hearing. I'm sure that will be something that is taken into consideration once the hospital gets back to us and he starts therapy.

    Love you all and thank you again for sharing!!!

  13. It's good you're moving forward with the beh & speech therapy - the waiting part is HARD (and what a drag), but from all I've read about what you've gone through - you can get through anything.

    And even if there is an autism (or other) disgnosis - it's not the end of the world. Your boy is happy, obviously loved - and I would suspect his sister does enough talking for the two of them (so he doesn't bother to).

  14. Julia - thanks for sharing your shock and hurt, it is never easy to hear there could be anything "wrong" with our kids. Labels are too often used negatively, but they can also empower, so regardless of what the diagnosis/underlying reason/outcome, use the services and support at your disposal to facilitate your boy becoming the best version of himself he can be :)
    My daughter has ongoing speech th., and although we see improvement every week, our psych. recently told us to start preparing for the move from "Global developmental delay" to "intellectual disability". Ugh. I just wasn't ready to hear it. But, I came home and our daily life went on - just as it should. The label means bugger-all, but what it means as far as support etc etc means a lot. hang in there :)

  15. Simon not speaking sure isn't the end of the world. We've dealt with a brain tumour so this is no biggie in comparison. We'll deal with whatever happens - I think we're getting quite good at dealing with difficult 'hurdles'. LR - Isabella and Pablo both speak enough for Simon and then some! LOL!

    Romana - hang in there too and even though I don't know your daughter - give her a big hug from us.

  16. The thing that children need more than anything else in the world is love. And it is so obvious how much you and Pablo adore him. Stay strong xxoo

  17. Thanks Tamsyn. We love the crap out of the boy and that'll never change...he's too darn cute. LOL!

  18. Oh Julia, what an awful feeling. I know because I have had that gut feeling before ... last year with Caroline. We still don't have an answer right now about her behaviors or if she is "normal" but I've gotten over my fears as she's grown the past year. She's still very much in her own little world and oblivious to what's going on with others but I'm starting to think that may just be her way?

    Another thing that might help ...
    Our youngest will be 2 this month and doesn't have a whole lot of words in his arsenal either. We have had the speech therapy evaluation twice now and they determined both times he would probably catch up on his own since he was fine in all other areas.

    Turns out, his problem comes from carrying fluid in his ears for prolonged periods of time that caused him not to catch on to other's speech as quickly as he should have.

    Has Simon had many ear infections? or problems with inner ear? I have the feeling getting tubes for my son would help him a great deal. Maybe it would help Simon too?

    All I've got for now, if you need someone to chat with or unload on ... you know I'm here :)

  19. Simon is so different from Isabella in so many ways. That is by no means 'bad'. He his often in his own little world. He's the kind of kid who enjoys playing by himself. He'll come get your attention when he needs you but he likes his alone time.

    Simon hasn't had any issues with his ears. Once, he had a very slight ear infection - it was a little red inside when the doctor examined him but it seemed to get better by the next day. That is the only ear issue he has ever had - that we know of. Since ear problems are often the case when a child doesn't speak, I'm hoping that once he begins therapy, they'll evaluate his ears for any issues.

    Thanks for sharing Stacy and as I put in my other comment to you, I'm here for you too. :)



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