Walking the Marathon vs. Running the Race

[Guest guest]

Hi 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