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Special Needs
CrazeyJaneyR
member
This sucks. This whole new life sucks big hairy ones.
CrazeyJaneyR
member
My son was DX last month with ASD. He's 19 months old. The therapy has started and it is so overwhelming. There is a constant parade of people in and out of our home - which wouldn't be so bad if he liked them, but he's having a hard time getting used to it. (so am I, and i'm an adult!). I feel so bad - it;s f$%king up my whole family. His identical twin, who is delayed & NT is also overwhlemed and my 3 year old feels left out from al lof it. This sucks and I just need to vent here b/c I'm guessing all of you may understand.
It's hard to advocate for this when right now it is making things worse and not better.
My poor little dude. Poor me too. Poor poor all of us. (call a whaambulance!)
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Re: This sucks. This whole new life sucks big hairy ones.
It takes time. We've all been there. It's a hard place and you don't feel you have the time to stop and grieve the diagnosis. Instead you just keep pushing through and then the grief hits you like a school bus.
It does suck. And then you know what? It becomes normal and it sucks a lot less, and then before you know it, it's your life. It's what you make of it. (I'm not trying to be snarky just explaining my attitude). Once I gave up trying to make my life what it was supposed to be and threw myself head first into the life I have it became a lot easier.
It does suck.
But it gets better..
My 6 year old was feeling jealous & left out when sister got therapy sessions so I talked to her therapists about including her sometimes & giving her the opportunity to help on days we didn't have therapy with special tasks. I know my child is older, but maybe talking to the therapists about getting your 3 year old included in helping might be less stressful.
Something that we tried that also helped out (which may or may not work for your child, but it's worth discussing) was we started off with just one therapist coming to the house for awhile (just the ST) then gradually added an OT to our troop & now we are going to add a BT in the next few weeks or so. My DD had a problem with new people, so gradually adding people & letting her get used to them one by one instead of all at once was less overwhelming for her.
Good luck!
I am having this kind of day, today, too. We got his dx in July and I'm just starting to understand the ways in which our lives are and will continue to change. Today I'm mourning what my SAHM life was supposed to be. For the past 3 years, DS and I have flown by the seat of our pants. Beautiful day outside? Let's go to the zoo! Let's call a friend! Let's go take Daddy to lunch!
Even with EI services, we had tons of free time. Now he is in school 3 days a week and our other 2 weekday mornings just got booked up with autism-related "stuff." An in-home parent trainer and then a behavior analyst is going to come evaluate and possibly start ABA with him. Once you factor in naps and how long my kids take to transition -- that's it. No more time to enjoy my oldest son all to myself during the week.
And we may add more therapies -- some in home, some away from home. Then there's parent workshops we plan to attend. I feel suddenly very boxed in. I crave freedom and spontaneity in our schedule and I feel like that is gone now.
I feel petty making this complaint. I am grateful every single day that his problems are developmental and not medical (well, there is the malnutrition aspect) or life-threatening. But, yeah, it still suuuuucks sometimes. I feel ya!
I actually went through therapy once DD started integrated preschool and I suddenly had some more free time (After her PDD-NOS dx, my life literally revolved around her ABA therapy, doc visits, therapists and ancillary "stuff")... I thought I kind of had my stuff together, but I realize in therapy that I never really gave myself a chance (or permission) to grieve the life I'd envisioned for me and my family. Gone was my dream of my girls playing together endlessly...Gone were those carefree SAHM days where we could fly by the seat of our pants. Once I really acknowledged how sad I was to have to give up that dream, I felt a lot less "burdened", if that makes any sense. It allowed me to just accept what our life now was and take it day by day. Those dreams may seem petty, but they're not. They're what motivate you to move forward. No matter what they are, when you're forced to let them go against your will, you have to mourn them.
Another BIG point to add... all those things I gave up on? Guess what? My girls play together! Maybe not for hours at a time, but certainly for chunks of time here and there. And we do have some fly-by-the-seat-of-our-pants days! Certainly not every day, but when the moon and stars all align... and it's absolutely wonderful. Certainly not something I would have appreciated like I do now were it not for DD's dx. So while life certainly isn't exactly as I'd envisioned, 2+ years into life with autism, I'd say it's a lot better than I thought it would be.
I think the initial period of adjustment really is tough. I had not planned on doing four days a week of preschool at age three, or therapy on the fifth weekday morning, or having to spend an hour in rush-hour traffic with both girls to get to therapy play group once a week, or my DD2 not being able to get her naps a couple of times a week because she's being schlepped around for DD1's appointments ... your expectations for your life suddenly get upended.
You have to give it a chance for everyone to adjust. Some things you all will just learn to work around as part of the new normal.
But one thing I heard repeatedly while we were reviewing our treatment options for DD1 was that you have to be very careful of sacrificing your family's life to therapy. Not saying that that's what's going on with you -- even though it may feel like it right now -- but it IS something to be careful of and keep tabs on in the long run, IMO. I think there is a balance to be struck, but there is also a ton of pressure to fill absolutely every hour of the day with therapy for a child on the spectrum, in hopes that it will erase their deficits.
Kids with SN need to be part of a functional family, too. And if it's all therapy, no family time; if the other kids' needs are constantly being put on the back burner in favor of the child with SN; if a family is destroying itself financially to provide for one member; if parents are neglecting their relationship b/c they're so consumed with what their child needs ... all those things are recipes for disaster, IMO. And the child with SN may ultimately be particularly vulnerable to any fallout from those kind of things.
But, it's not easy to figure out right away how to find that new balance. Things do get easier, and what once seemed like a burden is just the way life is. The thing is to make sure that all the underlying relationships are still functional, I guess?
I have a friend with a former micropremie who still has a G-tube and up until very recently, had major eating issues. Every once in awhile, her mom would take a break from doing the next session at the food clinic. They'd continue their work at home, but no formal eating therapy for a little while and more time to enjoy each other, do activities, etc.
I don't think I'd do that with my DD1 with ASD, b/c it's a different type of SN situation -- but I do like my friend's attitude that the answer to the question "what should I be doing with my child?" is not always "therapytherapytherapy." Or at least, not always formal therapy.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010