Walking

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Wow. Nobody suggested we check 's spinal cord, etc... when she wouldn't

walk. Everybody said " oh don't worry she'll walk one day " . I think the hardest

part for me was the toll my back took, because I had to carry her for so long.

Of course her being on the small side helped.

Oh, in my other post I had said it took a long time to roll over. I had

meant to say it took her a long time to sit up. actually rolled over

from her back onto her tummy at 10 weeks. We were thrilled at her progress, but

she'd just had heart surgery at 6 weeks, so we weren't sure she should be on her

tummy yet! However, once she rolled over there was no stopping her. She'd even

just slide down between the bumpers we had in her crib, so she could lay the

other way on her tummy. Because of her rolling over so young we thought she'd

sit up, etc... quicker too, but that wasn't the case. I'm sure you'll want to

throw a party for once he walks.

Thanks for the eye surgery prayers. We haven't started those prayers yet. Now

we've moved onto the daily prayers for to talk. It's always seems like

something is just out of her grasp...

Nina

Walking the Marathon vs. Running the RaceHi Everyone,I am mostly a

lurker, but have occasionally posted a response/comment or query. I am so very

grateful for this list serv as it truly is the only place where I know everyone

understands what our children and families go through on a daily basis.I

appreciate you listening to me as I vent for a few minutes. I feel very

overwhelmed at the moment by my son 's needs. My husband works 60-80 hours

per week and helps as much as he can when he is home, but it is not enough.

is our only child. Our families are unable to assist due to age, health

issues, distance, etc. Unfortunately everything feels like a burden as of

late.....I feel so ashamed to even say this, (as I know that my son certainly

didn't ask for all of his challenges) but sometimes I wish I could just run

away.I have had to learn to adjust my expectations of 's progress.....he is

making gains, albeit very gradual. I look forward to when he walks

independently( he will be 5 yrs. old at the end of August) as this has been

especially challenging. He will need eye glasses and his school would like me to

transition him to cloth training pants during the month of August when school is

closed. is such a sensory little guy- haircuts, nail clippings, new foods

etc. are a nightmare, so I'm not quite sure how the eye glasses will work, but

will be working with the school staff on this. CHronic allergies have been a

challenge lately, and one 's ear tubes came out and will have to be

replaced, as well as a pair of orthotics.The PDD part of is no question

the hardest- any change (even little ones) are always a trauma. We are using

PECs, sign language, and starting a picture schedule and have seen some success,

but it is often a struggle and the whining can be difficult to take. is

going through a stop/drop/flop phase which can be scary in a parking lot.The

journey can also be lonely at times....I've felt this lately, esp. at our town

pool, where I take often (his PT and orthopedist recommended water therapy

as often as possible to strengthen the musculature to encourage independent

walking). Sometimes we'll meet some nice folks, but many some

uninterested/uncomfortable in interacting with us. It's hard to be on the

outside looking in, sort of like the rest of the world is going on around

us....I hold a monthly breakfast for the parents at 's school (special

school for DS) at my home, but he is the only dually diagnosed child, though

some of the children also have sensory issues. I am happy for these gatherings,

but sometimes it is hard to hear about the other childrens achievements and

is no where near them.I realize that I am still grieving over the dual

diagnosis (which was almost 2.5 years ago).... I really thought I had worked

through this, but obviously not.How does one come to a place of true acceptance

and peace? I love my son very much and he deserves my best. I hope to be out of

this valley and back to the top of the summit soon.My very best to all of the

families " fighting the good fight " for our children. -, Mom to ,

DS/PDD-NOS, almost 5 yrs. old[Non-text portions of this message have been

removed]