I’m usually incredibly positive and very thick skinned. However, there are those rare occasions that someone’s words or actions really get to me.We are blessed to have a lot of friends and family in our lives. A lot of them have been incredibly helpful and understanding while we struggle with our son’s SPD, severe speech delay and other developmental delays. They ask us for tips on how to best interact with him and what they can do to help him (or us). Others try to make us feel better by claiming that there’s nothing wrong with Kaleb or that we’re over reacting. My little Kaleb Monster is pretty damn amazing if I do say so myself but that doesn’t mean there’s nothing wrong.
I know they mean well, but it’s incredibly frustrating. We spend so much time fighting to our insurance, chasing grants, talking to coordinators, working with therapists, coordinating with doctors, tracking down specialists, researching, planning and teaching. A lot of time and energy goes into working with Kaleb on his speech and other issues. If there IS something wrong, getting help early on is important. If there ISN’T anything wrong, then what does it hurt?
If you want to think I’m over reacting, go right ahead, just keep it to yourself. Telling me that I’m over reacting doesn’t help. Telling me that I’m “lucky that he doesn’t talk” because your kid won’t shut up isn’t helpful, isn’t funny and just isn’t nice. I’m pouring my heart and soul into something as simple as just getting him to try and say the word “mommy” at 23 months of age.
I know I’m not alone on this, what horrible things have you been told by a well meaning family member or friend?
Comments
brittany
Can you email me? I have a 23month old who is not talking either and he has SPD (pretty mild compared to some cases but non the less he still has it) and he is not speaking either. No one ever told me it could be because of SPD. He sees a OT and he got a speech eval and they said he did not qualify since he understood alot and was smart (he knows all his animal sounds and some letter sounds nad even a few colors but can’t say words just MOOOO for cow and a neigh for horse that sounds like a moan to some extent) lilmissbrittany23@yahoo.com
I would love to hear more and get some advice from you on the speech issue. Thanks!
Mommy Monster
Sent you an e-mail!
Kelley
I can tell you are one amazing mommy and I am so excited for you that one day (shortly) your Kaleb Monster tells you that from his own lips. Keep doing what you’re doing!!
This post is a good reminder for me to watch what I say more, especially to my sis. Her son is in a similar position as your son speach-wise (not offically diagnosed), and my daughter on the otherhand never seems to stop to take a breath (SPD), so I know I’ve made at least one joking comment to try to ease her mommy-struggles. People are well-meaning, but it still causes pain, and for that I am really sorry!!
Andrea G
Oh I can understand. So many people think I exaggerate my C-Dog’s situation (SPD, APD, VPD/dyslexic/tracking). We were finally able to end speech at the age of 7.5 because he plateaued.
Telling me “it could be worse” is not comforting. I spend too much time and too much money fighting for his rights and therapies. I am broke because of a disorder that “could be worse”
Also, when he was a toddler the President at the college my husband was contracted at referred to my precious son as “Birth Control Charlie.” Meaning he (Charlie) would make anyone want to be on birth control so they wouldn’t have a kid like him :/
I am writing this to let you know you are not alone. You are amazing and string and the fight is worth it. At 8 C-Dog is doing things I never thought he would be able to accomplish and I have huge hopes for him. He is still not “typical” but I can see just how far he has come. When he was younger I couldn’t see it.
Sending you an understanding hug
Ann
I hear you.My son does not eat and people that much due to sensory issues. I am always getting advice on what I am doing wrong . . . I have been to OT and feeding clinics, doctors, read books. He is growing but still thin as a super model.
Susan s.
You have grounds for concern. At 2 yrs. a child should have a vocab of about 50 words and should be starting to combine words. At 2, my son had 3words.
I have been lucky and have had mostly friends who are understanding. But, when I was working with my son’s school counselor, trying to create a 504 plan for him a year ago, she asked me if I had any hobbies. As in, “you are wasting too much of my time with your concerns about your child. And I think you need a hobby to occupy your time.” At the time, I had a son who cried every single day about having to go to school, I volunteered in his classroom every week, and I have a small home business. She made me so mad, it motivated me further to figure out what was going on. And I realized how little support we were realistically going to get from the school system.
Lilypad
I feel for you. Don’t give up. My son is now 11 (Tourette Syndrome, SPD) and he’s doing so much better than I ever thought. Progress IS possible and some day you will look back on this time and be amazed by how strong you were and how you got through it. My story re rude comments comes thanks to my own father. I left my son with him for a few minutes while I went to get my car. When I returned, my son was in tears because someone had started up a Harley right next to him and the sudden loud noise pushed him over the edge. My father was clearly embarrassed that a child of 9 would cry in public (he’s very old school) and said, right in front of him, “he’s got a problem”. Yep, we knew that, it’s called SPD. But to my son it was a condemnation of who he was and something he had no control over. He was left feeling, more than ever, that he did not measure up to my dad’s standards and was not worthy of his grandfather’s love. I’m used to feeling that way—you can imagine what I went through, as a sensitive, probably SPD child myself—but to see that happening to my child was just heart-breaking.
MommyMonster
Thanks everyone! I actually posted this a long time ago, Kaleb is now almost 26 months old and his progress is coming along very well. He still has a lot of issues with speech and was recently diagnosed with high functioning autism. We still have a couple of people telling us we’re wasting our time worrying for no reason. The way we see it, there is nothing wasteful about spending time giving our son whatever we think he needs to help him succeed.
Ruth
I am SO glad to hear we are not the only ones going through this! I am so sick of hearing from other people that we are “overreacting” or that I am “neurotic” for even considering the possibility that my son may have autism. My son has been screened twice and is CLEARLY a sensory seeker and gets both OT and speech therapy…people think they are helping with their chiming in on the subject, saying things like “really? he seems normal to me..” or “He’s so young, he’ll eventually grow out of it, I know so and so who has a son who had the same thing, and he wasn’t autistic!” I am 100% with you when you say, EARLY INTERVENTION is key, and if you lose that window of opportunity in the hopes of letting your child possibly “grow out of it,” then you have actually done more harm than good. And if it turns out, that they DO in fact grow out of it, then what harm is it that they’ve had the early intervention? The worst thing is when others who have seen your child only once or twice actually feel they have the right to chime in and insinuate with their comments that you are some overbearing, irresponsible mother or that you have Munchausens. It can be really defeating and hurtful. Theres my rant, sorry it was so long! Just feel like this is the FIRST time I’ve read about someone having a similar situation. Some days I feel like I am on the defense just for being a mom and doing what I think is best for my son.
Mommy Monster
Ruth, it’s somehow reassuring to know we’re not alone in this. Don’t let it get to you, I hear these things so often now that I’m starting to become numb to it. We’re doing what we think it best for them, if it turns out we’re overreacting then they’ll be even more advanced right
Smile, nod, walk away. You know your son best.
Crystal C.
Oh, we’ve told that he can’t play with someone’s kids because he’s too “weird”. We have a family member afraid her kids will catch his autism.
We’ve been told his speech delay (he doesn’t qualify for therapy I found out. Insurance won’t pay unless it’s from an injury and since he understands fine and very very slowly is improving with what his father and I do, then they won’t do a thing!) Anyway, we’ve heard it’s because we homeschool, because we keep him in his room, and so on. Once or twice a day he goes to his room to get away from things. And he likes to look outside and watch people and what’s going on. Somehow allowing him time to calm means we lock him inside all the time!
Other kids, especially older ones, can be hard for him to deal with because they won’t take the time to hear him. He’s talking like a 2 year old about…and he likes to play with the other toddlers or preschoolers only now. When he’ll play at all. I’m so sick of people putting him on the spot and demanding to know “do you have friends?” or “do you ever get to go play?” Then he refuses to speak to them at all! If he’s having a bad day he’s not interested in other kids, even if they’re playing beside him. Good day he’s out there playing but he only plays certain games. The adults are the ones that are the worst!
Even his potty training issues we had we were told it was because he didn’t attend preschool. They wanted him drugged because he wouldn’t do what they said and because he likes to do something other than sit as he’s read to. “Oh, this is your fault! Put him in daycare/preschool/public school and this will fix itself! The other kids will force him to stop being lazy and talk!”
It’s unbelievable what people will say.
Mommy Monster
It really is infuriating. We’ve been told it’s because we didn’t put him in daycare as well. Or the one that makes me angriest. They say it’s because my husband is a stay at home dad. I can’t stand people who assume a stay at home dad will sit in front of the TV and watch sports. My husband is the most patient man I’ve ever met. He goes through our son’s therapy sessions, plays with him, takes him out and works on his speech nonstop. There is no way we would get that kind of attention in a daycare.
He’s actually starting an early intervention preschool soon where he will start receiving all of his therapy sessions. We’re still strongly learning towards homeschooling once the time comes though. I checked out your blog, I loved sneaking a peek into what it would be like to homeschool.