Well, I just need to vent. I know that progress is SLOW with PDD,
but I'm an impatient person and it's driving me crazy! Especially
when Luke will say words one day and then will NOT say them the
next. Or he'll color one day, then not the next. Or he'll
totally attend to everything I'm saying to him ... and then turn around
and act as if I'm invisible and not speaking. It makes me sick
that currently he's not receiving therapy every single day ... I feel
like anyday he's not being seen by a trained therapist he's going to
lose whatever ground he's gained! I feel so helpless to do
anything to make an impact, yet everyday I'm trying my hardest to do
everything I can think of (and that you've all suggested) to HELP
him. I HATE that no one can tell me whether or not he'll ever
talk for real. I'm
angry that my insurance company considers his diagnosis a 'mental
health' issue instead of what it really seems to be, which is more of a
neurological (and hence medical)
issue. And I wish I had another 24 hrs in everyday to take care
of everything that seems to need taking care of ... including my own
health and well-being, not to mention my husband's needs.
*sigh* Thanks for listening.
Kellie
I hear you, and if I might chime in here:
We too seem to be going through a batch of darker days in our neck of
the woods.. the past few evenings Stevie's been very moody hyper and
angry and much more lost in his own world and especially hard to work
with.. last night especially it seemed all of the techniques and tricks
I have learned and we do with him at his class just got me nowhere at
all with him and when he's been like this its really almost as if we
had never been doing all of this work with him at all, it seems to have
just vanished into a cloud of smoke. Today he was also a real handful
at his class and his aid and teachers are starting to see more of this
as well.
I can only wonder why this is happening and worry, is it the bipolar
coming back, are we pushing him too much, *what* is upsetting and
pushing him back so?
I have also been struggling to find an acceptable compromise so that
I'm not always at his class with him every day and with him 24/7
because I simply cannot keep this up, there is no time to get anything
done, this house looks like we live in ethiopia for the laundry I can't
get to, the groceries I can't buy, the food preparation I can't do, on
and on.. I simply don't have the time and even though I am notorious
for living on little bits of sleep this has just become rediculous.
I TOTALLY HEAR YA!
Before my husband took his job in Iraq, we were looking at a 3 year waiting list at least for service! It just ate away at me. Thankfully we are able to pay for his service for now, but only until NOvember. Then my hubby's one year contract is up. He of course could go back for another year, but Owen needs a father just as much as he needs therapy.
Then what...we sit and wait for the stupid Canadian government to pay for it? that is our only choice.
The place we are on the wait list for ABA offered a 5 day training workshop in their summer camp. they had 5 sessions for 10 families each session. First come first serve, had to call and register starting at 9 am last week! I was up and my speed dial finger was ready! I just found out yesterday we got in! They have there therapists look after the kids through the day, and the parents go to ABA taining, then fun stuff at night, all free!
I wonder if they offer anything like that in your area?
Hang in there Kellie, He is young, and there is still lots of time for him. You are doing a great job!
I know hon it's hard. I feel the same way. My ds will start ST tomorrow and I'm just dying to dive in and hope it works. It's all very stressful on you and the marriage at times too. My ds isn't even dx'd and my dh and I are having a hard time. It's frustrating and makes me feel helpless. But I love my lil boy. And I try to just suck up any good. Like when he taps me, looks me in the eyes, and wants me to follow him to show me something he wants. Or when he does other "normal" things. I just praise him and try to eat it up to get me through the times when he is having meltdowns and acting crazy. Or when he loses a word I know he used to say all the time. And so on. Just grab all the good and put it away to use when it's not so good. And take care of you too.
Amber
I know it's hard and i hate the feeling of being helpless, which you are most certainly not!! i said recently in a past post that i think "mom therapy" is the best therapy out there. i started with just imitating what our st did with our son for only 45 mins a day, not to overload him and the i started looking into to doing things on my own and realize that you have a world of info right at your finger tips, i'm sure that many of us could tell you what worked for us and how we did what and for how long. Don't despair, he has some langauge and that is a very good sign, and alot of our kids will do one thing one day and not do it until several days later, it's like one step forward and two steps back....it's a crazy dance but it's a form of line dancing because we're all doing it too!!!!Take a deep breathe, enjoy your son and after he goes to bed on night, turn out the lights, light a candle and enjoy a bottle of cider (sorry i wanted to put wine....) or heck realistically, order a pizza and watch a ballgame with your husband!!!Sorry for chiming in with nothing but complaints of my own there a few minutes agoThank you, everyone, for your empathy, support and encouragement. Sometimes I have it in me to deal with this, sometimes I feel like a deflated balloon and the well of hope is empty.
I'm thinking of keeping a daily planner where I write down everything good that Luke does, or maybe even putting a star by the days where overall things went well to keep me going when times aren't quite as cheery. I'm so grateful to have this message board to come to where people will understand exactly how I'm feeling.
God Bless.
Kellie
the star thing is a great idea and also my son responds well to sticker charts, positive reinforcement is a great learning tool !!!! make one for you and maybe one for your son. keep your head up kellie, you're doing a great job!!
Kellie ... Luke is 2... call the nearest special ed school for mentally retarded and developmentall disabled they should have a FREE Early Intervention program... (I wasnt in Ohio Until Tyler was 3 and in Pre school so i cant tell yopu first hand experience here on EI)
Hang in there... It is frustrating because we want to see progress... but remember these kids will sometimes... many times temporarly lose a skill a word whatever to gain a new one... the lost skill eventually comes back though. Luke can and probably will pick up on your stress so do what you can to try to relax.... I know thats easier said then done,.... its stressful... but give it your best as I am sure you are and thats all anyone asks... I think you have links to different learning activities but if not check the links page I posted and they are in there.
Theda.... You are super woman... the energizer bunny who keeps going and going and going... I probably have more gray hairs than you... LOL! Stevie is making wonderful progress and you are putting in so much overtime! I dont know how you keep up! I know you want the best for Stevie... its obvious... but its ok to have a break for yourself once in a while too... I hope Stevies bi polar isn't "coming back",.... Maybe he is just feeling the stress from the fast paced changes as well and trying to show it?
Danielle I am so happy for you that you got in with a training workshop! WAY TO GO! Keep on fighting.. You and the other members on the board are doing some great things with your kids and progress is being made.... sometimes you cant see it as much as someone on the outside can because you live it everyday. Keep up the good work
Amber,..... Great news on your son starting ST! Things are looking up!! Keep taking it one step at a time Sometimes its easier to focus on today rather than the future!
Eileen, I SO agree with the "Mom Therapy" as you call it. We know our kids best and can probably get their attention and interaction better than a therapist... If you can watch what is being done in therapy and school and try to mimic it. Using the same phrases and ways of doing things will provide consistency which is a wonderful thing for our kids!
This road isnt easy, and it can be painful to see how far they have to go,... but we need to hang in there and keep on going on step at a time