Friday, May 1, 2009

Every once and a while...........


Every once and a while I am reminded that it is hard to have a child with delays, who cant tell me what is wrong, what he wants, what he needs, what he is feeling. When do I call the doctor, when do I let it go?

This week Alex has spiked a fever in the evenings, on Monday and Tuesday he was grumpy all day, Wednesday he was himself, but still had a fever at night, and Thursday no fever, but he threw up after his last feed. Is he sick? Does he need to see a doctor? what should I do. With Noah and Joel I simply asked them what was wrong, or they simply came up to me and said their tummy hurt, or just that they were thirsty.

I just want to say does your tummy hurt, are you hungry, are you thirsty? Is it your teeth? Is it your throat? The fact is I don't know what is wrong, I can only guess, and be left wondering if I'm right, or if I have let him down again.

My instincts need to be right on at all times to take care of Alex, and meet his needs, the trouble is I'm not perfect, and sometimes I just guess, and lots of times I'm wrong.

It is so exhausting always wondering and guessing. And every once and a while I am reminded that this is so hard.
But, I have to keep guessing, and Ill keep messing up, but its just every once and a while.

11 comments:

Kelly said...

AK was up at 4:00 this morning and I was so frustrated and so was she. She was trying to tell me what she wanted to I did not understand. She did not feel well yesterday so I guessed that she was thirsty...when I got it right...boy was she excited!! This is a hard journey but I really don't know anything different.

Kelly W.

Finding Normal said...

I completely understand this frustration! Our PT (whose daughter has severe disabilities) told me one of the most important things we can do is figure out a way to get Addison to communicate yes and no. Whether that's a specific noise or a sign or what, doesn't much matter. Now how exactly we do that, I do not know.

The VW's said...

Yes, this is a hard part of caring for our children who can not speak to us! You are doing a wonderful job! Keep it up! Hope Alex is feeling better soon!

Kristi said...

every once in a while I am reminded too. Noah and I get very frustrated sometimes with each other but somehow I figure out what he wants. I am probably not right all the time but we can only do our best. All my support.

Michelle said...

This is an every day battle for me and is one of the biggest issues I have with mothering a special needs child that can't speak or sign very well. It's incredibly hard. Thankfully, in the last month or so, Austin has started answering me by shaking his head 'yes' or 'no' to answer simple questions.

angie said...

This was also one of the most difficult parts of this journey for me. Hang in there...it does get easier. I wish that I could come up with something enlightening to say:). I do know exactly what you are going through. Hang in there:).

Kelly said...

Right now I am exhausted. . .
Thinking of you! Kelly F

ANewKindOfPerfect said...

This is a constant reminder to me of how hard it is to parent a special needs child. Knowing whether to make the trip to the dr's office or not. Knowing whether she is just grumpy, or something is really wrong. Knowing whether she's just fussy because it's hot out, or if she's having a metabolic issue in reaction to the heat.

It's hard. But we do the best we can and MOST of the time, our mommy instincts are right!

Phillippa said...

My mum reminded me the other night that James is still only 18 months old - just a toddler - and that all toddlers experience frustration and have trouble communicating their needs.

I know that idea brings up a whole heap of other thoughts but it has helped me a bit for now. I keep telling myself that, right now, communication frustrations would be a fact of James' life, RTS or not. I'm trying not to think about later yet!

I think you seem like a great mum to Alex. You're lucky to have each other.

The idea mentioned earlier in these comments, to work out a way to communicate yes or no, sounds like a great one. I'm going to try that!

Marissa said...

I feel you. Even though Marissa uses lots of signs and her words are developing more and more, we still encounter this issue. It is so hard not being able to determine what is wrong.

Hugs,

Alicia

Holly said...

WOW! This really hit home. It might not make you feel any differntly because of what I say, but here goes...If you are doing what you can for him in love then that is the best you can do. You are a responsible, caring mother who works tirelessly for your sons. It may not be perfect, but as long as it is done in love then it is all good.
Holly