How Do You Deal with the What Ifs and Should Haves?

We were just told DS has PDD-NOS last week. So a lot of what ifs and should haves are popping into my mind. I would love to know how others have dealt with them. I know on some level that they are not helpful, but they keep running through my head all the same.

What if I'm just not up to this? I'm exhausted every day now--how will I handle getting DS the help he needs to?

What if he doesn't progress? What f he had social impairments his whole life? What if he winds up alone--unmarried, no friends? What if he winds up dependent upon us?

And the should haves---I should have seen signs sooner. Should have started treatment sooner. Should have realized his wandering off from groups of children at playdates didn't indicate that he was an explorer. Should have realized the fact that I had to follow him around and couldn't chat with the other moms meant something was up. And so on and so on. There are so many of them in restrospect.

I know all of this isn't helpful. But what do you do with these thoughts?

Re: How Do You Deal with the What Ifs and Should Haves?

We're fairly new to the 'Spectrum' ourselves. DS only got his diagnosis in February but we only got him involved with Early Intervention in December. He'll be 3 in June so I too don't have a day when I'm not going "why didn't I do this sooner?"

I had to get myself a therapist. The guilt of it all was pretty consuming. Her first day of advice to me was that it really didn't matter why we DIDN'T see the signs or why we DIDN'T act on it before - the point was that we WERE doing something about it now. We WERE getting him all the help he needed now. So every time I have a moment where I'm revisiting that stage of "why didn't I", I have to consciously stop myself and repeat that I am doing it now, and doing everything I possibly can.

It dosen't ever go away - that feeling of guilt. But it does get easier to deal with.

Re: How Do You Deal with the What Ifs and Should Haves?

It's ok to have these feelings...
Whenever I feel like I must have done something wrong during my pregnancy/during birth/etc.-people tend to tell me to stop beating myself up. However, unless you live it, you don't really know how it feels. And I think, to some extent, those feelings that I messed her up somehow will always be there. Even if they're completely unfounded.
I had a lot of "what ifs" as well. What if she grows up and can't live on her own and needs a group home? What if she can't make friends? Things like that. DD got services when she was 3 and the results were immediate. She's come so far in the past few years...
You're on the right track and getting the help you need and being an advocate for your child. I also agree with the poster above...therapy can work wonders! You're in good company and you'll get through this!

Re: How Do You Deal with the What Ifs and Should Haves?

A therapist I worked with once told me that when a parent goes through a child's diagnosis, they go through the same stages of grieving as they would when a loved one dies. It is natural, and the stages are never linear - always cyclical. I am sorry you are going through this - if you live in LI, I can maybe connect you with support groups that are out there

Re: How Do You Deal with the What Ifs and Should Haves?

There is a greiving period. There is also chronic grieving meaning every so often you will go through the same grieving again and agan.

Re: How Do You Deal with the What Ifs and Should Haves?

Re: How Do You Deal with the What Ifs and Should Haves?

Thank you! I am finding my feelings go back and forth. One day I'm not good, then the next day everything seems the same as it always has been and I feel better, then the next day I'm sad again. And some days I'm angry with myself, others with his doctor, EI, whoever.

But that helps, to think of this as a cyclical process and one that will continue.

Re: How Do You Deal with the What Ifs and Should Haves?

AJ was DXed (on paper at 18 months old) IMHO that was SUPER SUPER SUPER late for me.

with that being said, being the 1st time mom at that point i listened to EVERYONE who said my son was developing normal. i am always to this day kicking myself in the arse saying i should have listened to my mommy gut.

how do i deal, i just do. i keep saying i can't do anything to change what happened or what didnt happen, and all of his therapists told me it would have been a fight to have him DXed when i noticed that he was off (6 months old)

it's hard but it gets easier in some ways.

when i had C, i had her in child find at 6 months and they did informal evaluations every 3 months, even though i knew she was 100% typical. she was formally evaluated at 18 months old and their findings were above average, which makes me nervous as well... lol... i cant win.

just know there will always be those thoughts, but think of the progress he is making now.

Re: How Do You Deal with the What Ifs and Should Haves?

I remember when my son was diagnosed with PDDNOS. People think that because I am a speech therapist, I would know what to do and know how to feel. It hit me like a ton of bricks...I. Work with kids on the spectrum everyday, full-time...my idea of being a mommy was that I get to take off the therapist hat and be "mommy". Not anymore...I will always wear that hat and do this all day long because it is what is best for my son. What helped the most was talking to othr parents who have gone thru that same feeling when they are first diagnosed...the state of shock, the blank daze you go thru just staring into who knows what, the crying, the wondering where you went wrong, the anger...
Like people have said, it does get better with time, but there are still days that something will trigger it, and I will cry...or when I yell at my son for stimming then feel guilty afterwards...there is a yahoo group that I joined that helped me feel like I wasn't alone...it's the NSASA yahoo group...look it up...the group of parents and the resources are amazing!
Good luck!

Re: How Do You Deal with the What Ifs and Should Haves?

My one son has ADHD & my other one has apraxia. I feel bad all the time for everything I should have done different or sooner. Or should be doing now. Even if I've done 10 things, I think about the 11th or 12th thing I should be doing. Then I feel bad bc I worry my DD, who has no special needs, gets less attention. I rarely give myself enough credit for what I do. It's Mommy guilt, plain and simple. Except it's amped up bc of the special needs. Try to be gentle with yourself.