Got the dx -- pdd, as expected

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Registered: 05-30-2005
Got the dx -- pdd, as expected
6
Mon, 07-11-2005 - 8:33pm

Hi, everyone -- well, it's D-Day -- or PDD-Day as we're calling it. We had our evaluation for Calvin this morning, and even though he's made so many improvements recently, he's still woefully behind in speech and way too obsessed with wheels. I saw it coming. I don't think DH was quite as prepared. Anyway, the good news is this, she thinks he's bright, which can only help. She was trying to evaluate him and get him to stack blocks (which he only does when it's his idea) and of course he wouldn't, but she said right then that she could tell it wasn't because he didn't understand stacking -- he didn't understand that he was supposed to copy what she was showing him. And he didn't really even care that she was in the room. So, there you go.
They are recommending 20 hours per week of therapy, to include special education. He already receives speech twice a week and OT twice. Of COURSE we're going to do it, but I am wondering this -- how does a family accomodate 20 hours a week? I work part-time from home, but I can see that ending really quickly if all my waking hours are in therapy. DH works full time and can only be involved early in the morning. I will do everything in my power to help this sweet little angel of mine -- and he is a total sweetie -- but I am seriously worried about my sanity if I have to give up the precious few hours of work (a.k.a. my former life). I just don't understand how we can do that much therapy AND do all the mommy-and-me stuff (floor time, play dates, etc.) that is supposed to be so good for him, AND take care of the house, AND ,well, have a life outside of therapy. What do other families do? Preschool doesn't start until age three in NY -- Calvin just turned two. I just don't feel very in control of my life right now and I don't want to give up my anchor of sanity. Any advice? Geez, this day just sucks ...

Kellie

Avatar for cathby
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Registered: 05-16-2003
Mon, 07-11-2005 - 8:59pm

Hi Kellie,

My DS, Jack Attack, just turned 4 and is PDD-NOS. Ah, I know that block stacking thing well! ;)

I'm sorry it's a tough day. I totally and completely empathize.

On the upside, Calvin is bright. Calvin is sweet. And Calvin is young. And it's great that he's had a leap in development lately!

We are currently doing, gee, I don't add it all up. But he probably gets 35 hours a week of therapy. Yes, it's hard. Most of it is at home or school. That helps. It's really a full-time job managing his schedule (and I have two other kids).

I guess you just gotta' dig in and get him what he needs right now. Things will fall into place. And you need to prioritize, e.g. playdates may not be as important as his other therapies for a bit.

Is he in Early Intervention? Than you will be getting the therapies at home. It's really not as bad as you think. I promise.

Cathy

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Registered: 12-24-2004
Tue, 07-12-2005 - 9:07am

Kathy,

Yup. You have a good idea of what reality will be like for you - - we all discovered early on that something had to go. Depending on who you are, you will make different decisions. I have a PHD in developmental psych and used to work in early intervention, but I don't work outside the home. My house is never well kept, but we run a dynomite intervention program at our house. I am expecting #2, however, and I am sure the program will suffer a bit as we adjust to the new baby. Time for me is almost nonexistent. Time for DH is not great either, but he is a wonderful Dad, who picks up the slack when he comes home. I post goals for our program or tell him what we need to focus on, and he implements this. He's become a great in-home therapist, really. Since I became pregnant, I would say DH's floortime is better than mine because he has so much more energy than I do.

I know a lot of moms who work full or part-time, and they hire extenders to put in time with their kids at home. Working usually enables you to have more disposable income, so they can do this. The services you are already receiving for your DS sound very comprehensive, so that is also good. You will find your way of managing this. There is no one right way, but you may see yourself drifting away from parents of NT kids, who just cannot understand your lifestyle, the way you have to do discipline, etc. It took us about a year to get our program going in a way that was comfortable for our family. Be patient, and start small by changing little things in your life.

Suzi

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Registered: 05-30-2005
Tue, 07-12-2005 - 11:33am
Thanks -- I know I'm just overwhelmed right now and it won't be as bad as all that, but I know something is going to go unless we get more help. We just moved to NY from MD last fall and I don't know that many people right now, and my work allows me to meet people -- which I need to do, no question. We have our families here, though, and now with this dx they have expressed more of a willingness to pitch in, so that may be an option. But, Suzi, I hope you are wrong about drifting away from parents of NT kids. This is a small town and the few friends I've met have NT kids, and the number of ASD kids are few and far between around here. I will have to work that out or learn to be pretty lonely. Or move again. Yuck.
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Registered: 02-24-2004
Wed, 07-13-2005 - 12:26pm

Hi Kellie,

Sorry for taking so long to post, it's been difficult finding the time to get to every message on the board!!

Nathan is 6yrs old and HFA. We just got him dx'd last year, so I didn't do therapy. I later found out that I "was" doing therapy....on my own....I just didn't know it. The school district couldn't say for sure if he was on the spectrum or not, because apparently, I had done so much with him already.....they couldn't tell for sure!! LOL

I find that so funny, because I was just being a "mom". He needed to be potty trained, learn how to talk, learn flexibility, understand expressions and feelings, etc. I did the same things with his older brother, the only difference, is that I had to work harder with Nathan. I think that if I had known that Nathan was autistic, it may have overwhelmed me so much that I probably wouldn't have been able to do everything that I did. I just concentrated on Nathan, and did the best I could in teaching him.

I'm a sahm, which does allow more time with my kids. My dh works long hours, so we usually only see him on his days off. Taking care of a special needs child, DOES just become normal, everyday life for us. I don't set aside time to do therapy with Nathan. He does get speech therapy at school, and is in ESY for the summer. But the way I do therapy with Nathan, is just everyday stuff. Therapy is pretty much all day around here. I teach him things all day.

I know how overwhelming it can be. When we got Nathan's dx I didn't know what I was going to do. But then I realized that I've already done so much. I just need to continue doing it.

Best of luck,
Michelle

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Registered: 05-30-2005
Wed, 07-13-2005 - 1:02pm

Thanks, Michelle -- I've actually calmed down today and have started to see that, yes, it will take time, but I have more help than I realized. Plus, like you, I'm constantly doing therapy through the day -- but most people would call it play ... or life! Continuing working, even the 10 or so hours a week that I do now, is really really important to me. Luckily we live near our families and since we told them about the dx, they are stepping up their interest in Calvin's therapy and want to take part in it -- even the extent of taking on a few of the sessions. So this could work out OK. I'm sure I have a few meltdowns in my future (of my own -- not Calvin's) but I'll get over them. Thanks for your post -- I really appreciate everyone's support on this board.

Kellie

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Registered: 05-30-2005
Wed, 07-13-2005 - 1:04pm

Thank you, Cathy -- I'm better now (for now anyway). I had a few days to sit on this and start to gather some support from our families, etc., so while I think it will still be tough this year until he starts preschool, I think I will be able to manage the therapy and a bit of my own stuff as well. Thanks for your support.

Kellie