Feeling down about devel. delays

[mama-a-llama]

I'm finding lots of ds's behaviors very challenging right now. And I know that they're totally typical behaviors--resisting having a diaper back on, wanting to walk holding my hands and open and shut doors endless times, etc.

I'm feeling really lonely b/c I don't feel like I can go and post about it and get a bunch of commiseration and suggestions. Well, I suppose I could, but people would be posting about their kids who are much younger and I think I would just feel down about it instead of feeling supported, yk? Heck, I don't even know whether I would post in Babies or Toddlers! And if I did, I'd feel like I need to explain the whole situation with the delays, or give an estimate of where he is developmentally.

And, I just want to say, I hate getting asked how old he is! I usually just say his age; I don't owe personal details about his development to strangers. But I feel like I need to explain. Or I get people saying, "oh, he must be a year old" (which he is, I guess) and my honest self has to say "actually he's 20 months". And then there's an awkward silence.

Also, I don't know how to handle the discrepancy between his size/strength and his developmental abilities. Especially since it's not always clear how much he understands. His receptive language is getting pretty good, but expressive is pretty limited.

[FancyD]

I empathise with you, I really do. DS is pretty small for his age, significantly delayed. It used to be okay at 18 months and younger, but now I'm just greeted w/silence when I say how old he is. He doesn't behave like a 2.5 year old, that's for sure. I try to act like it's no big deal, and it ususally isn't. It's just been getting harder the older he gets.

[wonderwahine]

I understand

ds is 21mths, and we are always getting the comment that he mst be just over a year old. I'm starting to get sick of the looks when i say no, hes 21mths old.

[faerierose]

I'm right there with you, I can't even read the posts in the toddler section anymore. My sister's ds is 6 months younger then my ds (who is almost 30 months) and sometimes it is so hard for me to spend time w/ the two of them together. The older ds gets the more obvious the difference and it just hurts in a way that's really hard to explain. I love my ds, he is great and he is making loads of progress, when there aren't any other toddlers around I forget about the delays. Now my 10 month old is becoming a toddler and it is obvious that he is catching up quickly w/ his bro and it's hard for me to accept that a year from now he will probably be "older" developmentally kwim. This is something I've been really struggling with.

[sbgrace]

I too find it painful to watch my son around children his own age. Sometimes it is painful in terms of his twin too but other kids are harder for some reason.

[newmothermary]

Definitely not a stranger to this feeling.
I bet I will be fighting/debating this in my head for the longest of time.

When I am together with friends and typical babies, I feel bad b/c the difference is glaring (at least to me).

When I avoid socials with friends and typical babies, I feel bad b/c I feel like a failure and I am short-changing my life.

These are raw, honest feelings to fight constantly.
I am tired.

Mary

[hippymomma69]

I totally understand where you're coming from! My DD is much older but it's still hard to see her behind others....and other parents just don't get it sometimes...

I'm trying to arrange some playdates with my DD with some kids from her SN class - hopefully it will help to have other parents I can talk to who get it....

hang in there,
peace,
robyn

[Jennifer3141]

OP, I understand how you feel too. My DS is now two and it seems like he's stuck in an extended babyhood here right now. He seems so far behind his very verbal 3 year old sister!

[Logan's Mom]

I can feel your pain. My DS is 18 months and doesn't walk, say or word and his receptive language is delayed as well. Its strange to see how big he is crawling at the park compared to the little ones walking/running/climibing. We have no idea why he is delayed, no answers from the Drs or EI. : I can't stand how my Aunt always talks about her grandchild and my only comfort is that she is 3,000 miles away so they don't have to play together. People asked me if he was walking at 12 months -- I'm definately tired of it at 18 months. Furthermore, he has an hemanginoma that people look at and stare at. We were at the grocery store yesterday and 2 kids said to their dad look at that baby over there with that thing on his head. UGGHHHH Please leave my son alone!

[peekyboo]

BTDT, writing the book

I at one point decided that Maura was going through an Extended Toddlerhood. It wasn't always easy at playgroup, watching 18 month olds run around, beginning to talk, playing baby dolls and cars, while 20 month old Maura sat there and shook a maraca. One day it got really overwhelming - all the other kids were running around the gym, riding bikes, playing on slides, and Maura just sat there. I had this overwhelming urge to scoop her up and just run away. I was literally about to cry, it hurt so bad to see the difference.

Of course, then my Irish stoicness kicked in and I gave myself a mental slap. Whining and crying and running off wasn't going to get me anywhere but embarrassed in front of the group, which would lead to pity, which I have no stomach for. So instead, I got proactive and decided that I'd help Maura practice walking (which she still wasn't doing at almost 23 months.)

My child decided to reward me by finally walking that day. It was quite the rollercoaster of emotions - one moment I was really low, and then suddenly, on the highest high imaginable.

For me, I have made the choice to keep positive. Sure, she doesn't talk much - but the plus side is, she doesn't mouth off at me Yes, she's still in diapers, but hey, that means I can take her out and not make fifteen potty stops! Other kids her age are running around, and while she does love to get out there and play, she still loves to cuddle and snuggle. I joke about how it would ahve been better if Maura was the short one of the girls (her sister, who's 2 1/2 yrs older than her, is very small for her age - so people expect so much out of tall Maura and a lot less out of petite Miriam - and at this point, we've started getting asked if they're twins since they're practically the same height!)

I still have moments, but I only allow myself a moment to wallow, and then I get back to being positive about things. Maura is a lovely little girl, unique in her ways, and at the end of the day, nothing I do is going to make her develop faster than the pace she's set for herself. I've accepted that fact.

[GranoLLLy-girl]

I totally understand how you feel. I recall when dd was a baby that I would go to the mall with her and another mom friend and just stare at babies eating like it was going out of style. And I would try to keep a smile plastered on my face and then after our little outing I would go home and while dd was napping I would weep into a pillow. It was pure hell.
I still hate to worry about food for her--and I hate it when people look at her and say isn't she a cute gal--how old--and when I say 5 or she responds--they sometimes literally gasp. She weighs about 34 pounds and she's five.
It's so depressing.
I just joke to people that I don't have to spend a lot of money on clothes--she's stilling wearing 3Ts and I can't tell you how many 5s and 6s I have put away in the closet.
It's so hard. I found that it does get better--just like everyone says--but it still doesn't make the 'now time' suck any less.

[newmothermary]

I just have to say I love your Irish stoicness. I am not Irish but I tend to be the same way.
Mary

Originally Posted by peekyboo

BTDT, writing the book

Of course, then my Irish stoicness kicked in and I gave myself a mental slap. Whining and crying and running off wasn't going to get me anywhere but embarrassed in front of the group, which would lead to pity, which I have no stomach for. So instead, I got proactive and decided that I'd help Maura practice walking (which she still wasn't doing at almost 23 months.)

My child decided to reward me by finally walking that day. It was quite the rollercoaster of emotions - one moment I was really low, and then suddenly, on the highest high imaginable.

For me, I have made the choice to keep positive. Sure, she doesn't talk much - but the plus side is, she doesn't mouth off at me Yes, she's still in diapers, but hey, that means I can take her out and not make fifteen potty stops! Other kids her age are running around, and while she does love to get out there and play, she still loves to cuddle and snuggle. I joke about how it would ahve been better if Maura was the short one of the girls (her sister, who's 2 1/2 yrs older than her, is very small for her age - so people expect so much out of tall Maura and a lot less out of petite Miriam - and at this point, we've started getting asked if they're twins since they're practically the same height!)

I still have moments, but I only allow myself a moment to wallow, and then I get back to being positive about things. Maura is a lovely little girl, unique in her ways, and at the end of the day, nothing I do is going to make her develop faster than the pace she's set for herself. I've accepted that fact.

[usolyfan]

I too am in this club, like it or not. Dd is 18 months. Cognitively she is very bright. Her receptive language is amazing but no spoken words as of yet. It is getting harder and harder to be around typical children who are running from one place to the next, climbing stairs, and going down slides (on their own). Dd will never be able to do these things (at least not without support from extensive bracing and a walker/crutches). It is painful. I find myself mourning the loss of her leg movement (which she's never had). The loss of a typical childhood. The loss of what I envisioned for my first-born child.

Its at these times that I have to remind myself to celebrate all that dd can do. She can maneuver her mini wheelchair all over the house, she can get into all my cupboards, she can eat the dog's food out of the dish, she can carry toys from point a to point b using her chair and then leave them in a trail everywhere between. No, she doesn't have the use of her legs but she has so much more to offer this world. She will be able to do sooooo many things in life. Her future is so very bright and my dreams for her so numerous. These are the things I must stay focused on.

[AuntLavender]

At the 7-11 a lady

behind me asks how old my son is. I tell her he's 4. She says she forgot what children sound like at that age since hers are in their 20s. I tell her he's delayed so hers probably didn't babble at 4.

My son is almost 4 years 2 mos old but he's neurologically only about 2 years old.

My son's receptive is delayed so when other mamas try to tell my child something I am tempted to say "He won't understand you" to them! :P

We frequent the 7-11 near us (8 tenths of a mile from our house so we walk there) because my son likes us to buy him a drink. Almost everyone in the place enthusiastically says "Hey Roger!" everytime we come in which is terrific! My son doesn't respond but it's nice to feel welcome just the same.



Sincerely,
Debra, homeschooling mom of 4 ages 10 1/2 (AS), 9 1/2, 7 1/2, and 4 (Apraxia, Dysarthria, HFA)

[AndVeeGeeMakes3]

Right there with ya.

I was just folding DD's clothes and thinking how tiny she is. She's wearing 12 months and she's 25 months old. What's really funny is that every once in a while someone will ask how old she is and, when told, say, "Wow, she's so tall!" Cracks me up!!! I guess it's because she's so skinny as well as being short.

But, I'm only 5 feet tall myself. So, I kind of like that she's tiny. I always loved being the littlest one around. I figure, she's got her daddy's red hair, and my height. It's my own little way of "claiming" her, since she's adopted.

Kids like to try to grab her trach. I guess they think it's jewelry or something. But I really don't mind that. Actually the worst comments I've heard are from parents of other children at the therapy clinic. It's like they've never seen something as strange as DD. Yet, they are the parents of a SN kid. Strange.

[mama-a-llama]

Thanks all. It's always good not to feel alone. I think it doesn't help that when I'm scrolling down the forums, the thread in Toddlers for his birth month keeps popping up, and it says something about "independendent" toddlers.

[bri276]

wow, can we all start a commune somewhere and just live in isolation?

Thanks all. It's always good not to feel alone. I think it doesn't help that when I'm scrolling down the forums, the thread in Toddlers for his birth month keeps popping up, and it says something about "independendent" toddlers.

I know. I can never really go in the toddlers forum. technically, dd isn't even toddling. ha! I feel jealous of the common "complaints" of moms with typical kids.

DD has just turned 2 and is not walking and has only a few words/signs. She scoots around and plays almost age-appropriately with toys, and eats everything a typical 2 yr old can, and when it's just us I think she's doing so well and I often feel very hopeful about her future development etc. Logically, I know her condition has a very good chance- she will probably sprout around 4 yrs old, cognitively and otherwise, esp. due to the medication she's on.

None of that helps me when I go to the playground and watch the other 2 yr olds running around. I go to the playground and wonder why I'm there- sure, dd can swing the baby swing for a few minutes, and if you put her at the top of the slide she'll try and scoot down it, but you have to hold her, and then that's it. What's the point? And I totally agree about the age thing- everyone guesses 12-15 months. She is tiny, she wears mostly 18 months, she's 23 lbs and 30". I like her being small in many ways, including the fact that people expect less out of her until they know her age. I never ask other kid's ages, and I dread their reactions when I tell them hers. I often follow it up with "she's a peanut" or, if her motor delays are obvious in the situation, I'll say "she's getting physical therapy, but she's coming along on her own time."

It hurts. it hurts because she's not enjoying herself like the other toddlers are, but it mostly hurts because other people are feeling glad their kids don't have these problems, and it makes me wish everyone had to go through something like this to see the important things in life. when I feel sorry for myself I try to get over it by thinking about children who are truly ill and suffering. we are lucky.

[mamaverdi]