Re-intro & how to stay positive?
Hi ladies. I visited this board a year or so ago when we were going through the diagnosis process with my younger son. We were told at the beginning of the year that he is indeed Autistic, but we've had him in a SN class ever since and he's making huge improvements and starting to talk, which is helping so much.
My older son was recently diagnosed with Tourettes Syndrome and he also has Muscular Dystrophy, but it hasn't caused him any problems. His neuro says it could remain "dormant" or it could progress at some time later in life. We aren't treating at all for the MD because there isn't currently anything to be done, but we are treating the Tourettes.
My question is this - How do you continue to stay positive? After a particularly difficult weekend with the boys, I feel like I'm going to lose it. My DH works long hours and I'm often alone with them until they go to bed. Often I only have 20-30 minutes of "back-up" a day. The noise and the constant tantrums is just eating at me. How do you cope?
Re: Re-intro & how to stay positive?
honestly, you have to live and breathe the "one day at a time" mantra. DD#2 was dx'd with PDD-NOS about 2 years ago (she's about to turn 4), and for me, the huge progress she's made in the last two years helps me cope with the rough days (which thankfully have grown fewer and farther between). They do occur, though- when I least expect it, too. So during those rough days, I always remind myself that this day is finite, tomorrow is another day, and I cut myself slack big time (i.e. don't worry about a balanced dinner, let the TV on a little more, etc.)
I will say... even though I think I'm pretty positive regarding DD's "stuff", I still get that "punched in the gut" feeling when I least expect it. Case in point- Sylvie was an absolute disaster at my best friend's son's birthday party a few weeks ago. She was tantruming, running off, just being really hard to deal with in general. In hindsight, I should've realized that that kind of environment might not agree with her, but I let my guard down, and I paid for it. That, coupled with seeing all the typical kiddos her age who were totally taking in and enjoying all the birthday madness really put me in a total funk for a few days.
It sounds like you need a break. Does your DH step up when he is off? If not, he needs to. If that is not an option then find a sitter or a mother's helper to take some of the burden -- even if it's only for a couple of hours a day.
Don't neglect yourself. Exercise and eating right goes to the bottom of many mothers' lists of must-dos. You will no doubt feel worse if you are under-rested and poorly fed. I'm sure the last thing you feel like doing is exercising, but a 45 minute walk on your own a few times a week would probably help (if you are not exercising already).
Being a parent is hard.
I think I had that "punch in the gut" experience yesterday and fell down the slippery slope of "how did I end up with two children that both have problems?" I guess I'm having a bit of a pity party today. My little guy had to be pried off of me by two teachers this morning and it's just so heartbreaking to have to go through it 5 days a week.
As for needing a break, I really, REALLY do! DH is not very helpful. I know he wants to be helpful, but he just doesn't know what to do and the fact that he's not around very much leaves him out of the loop when it comes to doctors and therapists. He's only ever attended one therapy and he was completely shocked with how bad it was. Sometimes I'd like to switch places with him and while I know he works twice as many hours as I do, sometimes I'd rather be at work. Being a parent IS hard!!