Friday, January 9, 2009

Could have done without that...

Have you ever had one of those days? You know the kind. The ones where you reallllly wish you had never gotten out of bed in the morning? Yeah. We had one of those yesterday. Not. Fun.

After waking up this morning and vowing to forget that yesterday ever happened, there is, however, something that I can't stop thinking about.

Yesterday Dylan's OT was here for a scheduled visit. We were talking about how Dylan's 6 month formal evaluation is coming up. I asked her what I should expect from this. She told me that the EI team would be testing Dylan on specific skills such as fine motor, gross motor, etc. The EI team wants to see where he is with the goals that were set for him back in July. She said that based on what Dylan could do, they would place him on a monthly scale.

She then went on to say, "I can already tell you this. He will most likely fall in the 2 month range for most of his abilities.".

Even though I already know that Dylan is "behind" where he "should" be, hearing those words, "2 month old" spoken out loud felt like a swift punch in the gut. You know...I don't see Dylan in that way. I just see Dylan. I have been working pretty hard at trying not to compare him to anyone else. And as an athlete and big ol' competitor, that isn't an easy task for me. But, I'm trying. And now this is being shoved in my face. In black and white, too - your son is not where he should be. Where most babies are. He is behind. Pretty far behind, too.

So, what I really don't understand is why my little guy, who has Down syndrome, is being compared to other kiddos who do not? What purpose is that serving? Will it help him achieve his goals any quicker? Will he then be able to control his neck muscles better? Will it make me or his dad feel remotely positive having that piece of information? I don't get it. I really don't. I'm a teacher, so I fully understand the need for testing to see if goals are being met. But to then go on and compare him to a "typical" baby...I don't see the purpose.

And honestly, because of the way that yesterday was going, I really could have done without that little piece of information that my son, at 6 months of age, is already 4 months behind. I say, let's give the kid a break. He just went through major heart surgery with some complications to boot. The mere fact that he is here and is smiling, is quite an impressive accomplishment if you ask me.


Rebecca said...

I agree Laurie, Dylan has had amazing acomplishments. Even if they say "two months" he's been through far more than most other 6 month olds. He is amazing.

Sharon said...

Hi Laurie - I totally agree. My EI coordinator said it was up to me whether I wanted them to assess based on age range. I opted not to, for the same reason you mentioned. I felt it wasn't useful or helpful information. So, instead, they just noted what he was able to do at his six month assessment and what we should be working on in the next six months. No matter the age-range of his skills - Dylan is adorable and amazing!

Lis said...

Hugs sweetie

Cleo said...

I totally agree with you. I feel that what is important about the early intervention programs is all the support they provide, the therapies that are helping Dylan reach his fullest potential not the evaluations which are unable to measure all Dylan can REALLY do on a daily basis, anyways. Dylan, like any other baby will meet his milestones on his own time, whenever he is ready. He is a warrior, he will overcome and rise above any challenge just like he did when he had to fight for his life, winning a huge battle and recovering successfully from his ohs. Dylan will continue to lead the way and he will continue to amaze everyone. Everything is OK Laurie, stay strong and positive ~

Ellen said...

Every picture you post, every story you tell just amazes me. Dylan amazes me. What a wonderful little person. Two months-schmoo months. He's the cutest six month old in the blogosphere these days.

Cathy said...

I totally agree Laurie!!! I'm going to see if we can do what Sharon suggested...not assess Lily on age range. The only thing it does is make me feel like crap!!!

Here's another thing I've noticed and wondered about...maybe our kids just don't want to "perform" when the therapists are around. Yesterday when the DT was here, Lily was just jabbering away. The DT said...oh, this is great, I've never heard her talk. Yeah...that's right, you haven't heard her talk...doesn't mean she isn't doing it. Just like Lily chooses not to roll over when I want her to...doesn't mean she can't do it...just doesn't want to.

I guess what I'm saying is WE know best what our LOs can do. If it takes them a little what!

Thanks for posting this. I'm thankful that I'm not the only one who feels like she got kicked in the gut when I hear those numbers.

Dylan is terrific and he's got a mommy who cares so much about him that she only wants the best for him...understandably! Hang in there!

Karly said...

Yep, I have written this same post before. I wish they would use levels or something. It would be so much better to say "my kid is at level 3, which is crawling and we are working on level 4, which is pulling up" or whatever. Our therapist is very good at not stating the age Kailey is testing at, but it's not like you can't help but see it on black and white on all the forms. The testing portion of her education has really not gotten any easier from that standpoint. {hugs mama}

Jocelyn said...

Hi Laurie, I'm from the BBC board and have never commented on here, but love to see pics and updates on little Dylan. Myles is 5 months old and at his last PT eval the paperwork said he was performing at a 2-3 month level. I asked our PT about it, who we love, and she said not to worry about it. She said that she hates to compare him to a typical kiddo, but she has to to get insurance to pay. :( sad, but true. It's too bad the OT threw it in your face a bit, but know that Dylan has made a bigger impact than most "typically developing" 6 month olds!

Anne and Whitney: Up, Down and All Around said...

I am sorry you had such an awful day yesterday and especially sorry the OT made the comments in such a casual way, as if that would not be a big deal to you. Also, I bet Cathy is right, Dylan maybe isn't "performing" the same when the therapist is there as when it is just you guys. He is doing so many things well - look at how great of an eater he is, that is quite an accomplishment!!!!! I am sure he is doing many other things too and he will reach the "milestones" in his own time. (although, I know all too well it is easier to say that than to experience it--- we just have to try to be patient and keep reminding ourselves of this!)

I am not sure since this was not a detailed blog about your feelings about your OT, but if for any reason you do not feel 100% comfortable with her and think she is absolutely the best person to be helping Dylan, you could probably mention to your case coordinator (if that is what they call it in your state) and can switch at any time. (at least that is how it is set up in Indiana - and they told us the therapist would never have to know the reason we switched is because we do not like them, but maybe the coordinator could say it was a scheduling issue or something?)

Keep up the GREAT work with Dylan and Cassidy!!!! :) I hope your day today was better than yesterday and hopefully tomorrow even better yet!

datri said...

Dylan's doing great!

I still hate evaluations. Kayla will be 5 in April and while I've learned in my head to take the evals with the mindset that they are necessary to get services, seeing the numbers in black in white still stabs me in the heart.

Lisa said...

(((hugs hugs hugs))) Laurie, this is what I was getting at in a post I made a while back . . . I think I called it "Changing My Thinking." If our kids are measured on a separate height and weight chart than "typical" kids, then why shouldn't their development be charted in the same way? I can imagine how much this hurts. Finn will have his 6 month eval next month and I'm not looking forward to it one bit.

Jen said...

Ugh. I hate evals.

And you're right; he's been through so much, healthwise, that it isn't even fair to compare him to anybody, DS or not. So try to remember that, and for what his little body has been through, he's a total superstar.

Amanda said...

I agree, comparing his achievements (which are many!) to a "typical" scale doesn't really seem fair. It seems to me that you would be in a position to feel like you need to catch up or something. It sounds to me, based on your post, that you definitely have the right mindset though - what he has achieved is more than many us ever could. Try not to let the numbers drag you down - but I could understand how frustrating it can be.

Mara said...

Don't fret over it ! Regardless of what anyone says... Dylan is our hero !!!!! lol BTW- I think he would make a cute boyfriend for Kayden ! He is such a cutie !!!! lol ((hugs))

Jessica said...

All I can say is I understand. ((Hugs))to you.

Jeanette said...

When Sydney had her one year eval there was the regular ECI, then a PT (who worked with her early on for 3 months) and an ST. The eval took 3 hours and they asked me all kinds of questions. I was getting discouraged as I was saying "NO" more and more often as the questions went on. The PT was the one reading the questionaire and my ECI jumped in REPEATEDLY and said that Sydney was doing Wonderful. She was frustrated by the barrage of questions and saw my concern on my face. In the end, the official eval said that Sydney was "on-target" for some things and "behind" on others. I was at a loss as to what to think. I was feeling a lot of what you described.

My ECI stayed after the other two left and said that Sydney was really doing just FINE! Jan works with her on a regular basis and is a better judge than a yearly evaluation and that I need to REALLY take all of that with a grain of salt.

What I have found is that Jan and I set goals for Sydney and she meets them. Sometime she hits them pretty quickly and sometimes she takes a while. We re-set the goals as needed according to Sydney and not the tests. I DID find one thing useful about the whole eval questionaire.... that was what to look out for as a milestone. ECI is important and I am glad that we have Jan... but I get a lot of support and grounding from meeting with our local DS association social group for toddlers.

Dylan is doing fabulous! Evals are always tough and unfortunately they are going to stay that way. Keeping yourself tied to the DS community, whether in real life or through blogging will help you get through these things. HUGS!!

Derek, Kenzee and Gage! said...

You know what I was thinkin' when I read your post? I know that it is a stab in the gut, and nothing I say will make any of us feel better about the numbers they hand to us, but this is just my way of trying to make myself feel better, and it really kinda does... So even though Gage is my first baby, I have heard a ton of other people say it. "My baby is growing up too fast!" Well, I think we are the luckiest moms in the world... our babies stay babies for longer!! I really think that with my next kid, I am going to be so sad when he/she just grows up before I can blink!

I'm so sorry to hear you had such a bad day. You really don't deserve it. Just remember you are a wonderful mom and you have given Dylan the BEST life he could ask for. He is a HERO... man that boy is tough.

blessingsandglory said...

Laurie - the first few evals where they "compare" your little guy are the hardest. You described it perfectly - like a punch in the gut. The good news is that it will eventually not even phase you. Good or bad, I'm not sure. But you won't really care - because you know and love Dylan, for just being himself. No comparisons. Dylan is an amazing little guy and you are too!

But that doesn't mean that there won't be days that are just "bummer" days. And that's OK. Because you are still a fantastic mom of two darling little kiddos.

Big hugs to you.


Amy said...

Yeah I have to agree, I don't quite understand why it's necessary. Or why do they need to put a month on his skills? ALL children vary in their skill range at the same age so how can they even say 2 months? :hugs:

Angela said...

I know this is a bit late, so I hope you see it!
I, too, struggle with Benjamin's delays. It's one thing at birth to be told he'll have delays. But then they start happening (or not happening, as it were), and it's just hard. Benjamin will be nine months old next week. And he's still like a three-month old. It is aggravating and sad to me. I expected it, I know it's okay, but it is still just sad. And to be perfectly honest, it's inconvenient! I can't even really carry him on my hip yet b/c he doesn't have the trunk support. Oh the humanity! LOL
Benjamin first started PT at five weeks old. They set his six-month goal as sitting unassisted and playing with toys. I thought that was a bit extreme, even for a "normal" kid, but who was I to say anything? They said, "Don't worry, it's just a goal; if he doesn't meet it we'll just move it." Ummmm...yeah. At six months he had just had open-heart surgery and now even at nine months (after his intestinal surgery) he is nowhere NEAR sitting. I predict he might sit at 15 months. That's my silent personal goal. We'll see.
HUGS! This sucks at times. I have good days and bad days, and it's so nice to have others to go through it with.
BTW, did you ever mention to your doctor about Dylan's spitting up since he started solids?