Monday, July 19, 2010

You'd think I'd be used to this by now.

These evaluations. Assessments.

Dylan's 2 year eval is on Wednesday and I'm anxious. Each time I think of it - butterflies. But why? Because he's 2 years old now? And his delays are becoming more and more apparent? Possibly. But I remember feeling nervous about his 1 year eval. And I'm sure for his 6 month one as well. I want him to do well, but yet I also don't care. Or rather I don't want to care because I know that in the big scheme of things, it does not matter. But yet... They told me that these scores will be sent to his future preschool. That they will be used to share important information with his future teacher.

They want to share his actual scores with me this time and I said I would think about it. I felt like they wanted me to say yes, as if I am in denial or something, but it's not that. They told me that once he's in school, there would not be a choice - whether I want to know or not, they are going to share it with me and in a not so gentle way, either. Oh, I just don't see how that information can in any way be beneficial for Dylan. Or for me. Will he walk sooner? Talk sooner? Place blocks one on top of the other sooner?

So then, what I don't get is - why the nerves? The butterflies? Sometimes I still worry that I am going to hear something that I don't want to hear... Maybe I am scared to hear it. Maybe it's different than what I think it is. Maybe, just maybe, it is a touch of denial, then. My own thoughts and guesses of "where Dylan is functioning at" don't count because they are just that - thoughts and guesses. They are not official, they are mine. I'm his mama and I am biased. Maybe I am too afraid to hear the words coming from someones else's mouth. Afraid to see the words in print. Words and numbers that would then become very real to me. Words that say that my son, this little boy who I love more than anything in this world, the one who in my eyes is amazing and wonderful and sharp as a tack, is, according to an official evaluation, actually functioning as a...what? 9 month old? 8? I don't think I can bear it, I really don't. Even though I know it does not change a darn thing, it may hurt. No, it will hurt. Badly. And I do not want to feel sad about Dylan...

Do I need to know? Do I need to know exactly how much of a delay there is?

Because my hope is that there are more important things in this life for Dylan. He is delayed, yes. But yet, he IS wonderful and amazing and sharp as a tack. He is friendly and silly. Cranky and loving. Happy and feisty. Sensitive and observant. And he is showing me, showing us, every single day a different side to this life. A different look at life. A perspective that reminds me, each and every day, to thank my lucky stars that I was given it...





So I wonder, do I need to know?

18 comments:

Looking Up said...

I can really relate to what you are saying. I will never forget the first time that my son Josh had an EI evaluation. He was almost five months old & still recovering from open heart surgery. The therapists told me that my son was profoundly delayed & I sobbed for days. Of course I knew that my son was developmentally behind. He has DS & had major surgery, any child would have some delays based on his medical probs alone....But there was something about seeing it in print that made that fact sting so much more. As my son has grown(he's 19 months old now), I have found those evals less & less painful. I've come to the realization that yes, my son is speech delayed. And no, he is not walking independently like the rest of his peers, his evals state those facts in black & white. But one thing those evals can't measure is my son's potential. I KNOW that my son is bright. I can tell that he is soaking everything in like a sponge, he just can't express it all yet. Like you say, I see everything through a mama's eyes, but doesn't a mama know her baby best? Our little guys are gonna go far, it's just gonna take them a little longer to get there...

Ann said...

"They told me that once he's in school, there would not be a choice - whether I want to know or not, they are going to share it with me and in a not so gentle way, either." Why in a not so gentle way? It sounds threatening to me and I don't get that stance.

Kelly said...

This is such a tough choice!! And lord knows, there are a lot of us in the same boat! Scott & I have chosen NOT to hear the scores. And looking ahead, as of now, I STILL don't see myself wanting to know the scores. I've been preparing myself for the preschool days & the IEP's, and honestly, I still don't care what those scores WILL say. All I know, is when that time comes, regardless what other teachers or evaluators have to say from a "CLINICAL" standpoint, I will be sure to have some things to tell them too, about LANDON, and who he is and what we know he can do, (Landon & only himself). Clinically speaking it's all about statistics and textbook stuff of where our kiddos "should" be at any given stage. Honestly, I don't care, Landon will do things when he is ready, and I am at peace with that and totally supportive of him.

I don't function in my life or judge anyone (my children most importantly) by anyone or any textbooks standards. All I expect from my children is that they they try their best and are happy. If one should struggle with math or english, I look for a tutor. Landon is no different. There will be areas that he will do well with, and then there will be those that he will struggle with (just like the rest of us). And I will see to it (through his IEP, that all areas he needs help with, he will get). I know there will be struggles, but in the grand scheme of things, anyone else's opinion just does not matter (and neither do the numbers).

Throughout Dylan's life, you will do EVERYTHING you can for him, before he starts school, during his school days and all the days that will follow. School will be a part of his life, but he will live and experience so much more than those school years. He will learn & grow so much more without IEP's and talks of delays or any silly evaluation. Evaluations don't make our children who they are. They are words and scores and categories.....all the things we try so hard to eliminate right now. Why bring that back into our lives later. You are a wonderful mommy, and Dylan & Cass are going to be just fine. The pictures you post are of pure love and happiness, you are clearly doing something right. Hang in there Laurie, when the times comes, you will do whatever is right for Dylan (don't underestimate yourself)!!

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

ok - i do not think i could say anything better than what Kelly (Landon's mommy) had to say. You do what your "mommy instinct" is telling you and if you decide you are ok with hearing the numbers at the eval - go with it, if you think you and dylan and your family are better off not hearing the numbers - go with that!!! stick to whatever works for you guys because that is ALL that matters!!!!!!!!!!
we have whitney's ifsp meeting coming up sept 10th and sometime soon i know they are supposed to come out and evaluate her - and i am dreading it. partly because i want her to do so well and show off how well she is doing but partly because as she is doing things well each one of our therapists has said something to the effect of "whitney we hope you do not show off like this when it comes time to do evaluations" --- bottom line, if she is doing "too well" then she will not qualify for the level of services she is receiving now but if she does not do well int he eval. then the "numbers" will be hard to see. i do not think there is really a "win" when it comes to evals but it is what it is and i guess if it means whitney will continue to receive her ei services at the frequency she is currently receiving them (and appears to be doing well because of them in addition to what we do with her) then i would rather her "not show off" the day of evals? does that even make sense? let us know what you decide and how things go on wed. either way - there is no way an evaluation from people who do not live with dylan can be 100% accurate - you know his capabilities, his strengths, his weaknesses, etc... better than anyone and that is all that matters!!!!!!!!!!!!!

Melissa M said...

I don't really see the point in knowing what the 'scores' are either. It doesn't change the things you are working on, or make him do things sooner. Claire's 6 month meeting is coming up, but there's been no mention of an eval, which is fine with me. I'd rather just update her goals and move on.

Anonymous said...

having worked in homecare,I know they need to have goals and evals to justify to the insurances why they are there,other then that,I see no point in comparing ANY child to another!!!Who cares!!I can't imagine Dylan,or any other child being any more perfect. After all,aren't we all individuals? Piecy(Dylan and cassidy's VERY proud grammie!!

Sharon said...

Just enjoy him -- you don't need scores right now.

Christi Harrison said...

scores schmores. Dylan is a happy boy. Good job Mama!

Question, does Dylan have orthotics? Jimmy just got fitted for some. I wonder if that will help in the walking department.

Sharon said...

Hey Laurie - I'm not sure if this is statewide or not, but our EI is not required to test if your child has a diagnosis. I think this is new in the last year. They will offer it to you - but you can accept or decline and will still get whatever services you need. So, I declined - feeling much the same way as you. What's the point?? I figure his team of therapists and I all know where he is now and what the next steps/goals are. Any testing wouldn't have changed or added to that. It's worth asking your coordinator!

Jocelyn said...

Reading this makes me frustrated for you. I think you should say no, you don't want to know any "scores." What difference would they make? I'm not sure how it works in different states, but I don't think our EI does any type of scoring, not that I know of. We just look at the old goals, see if they need to be modified, and move on. Our evals are so informal, I think because, based on his diagnosis, he's going to continue getting services whether he made tons of progress or none at all. That sucks that they might be pressuring you, and who knows, maybe the public school system won't force you to know these scores either. I know the qualifications for services are different as they get older, but that doesn't mean the people you choose to surround your son with are going to force you into acceptance by showing you scores. You know Dylan best, so who cares what they think?

Tara said...

Oh. My. Gosh. I love your Dylan. He is the cutest. He seriously just keeps getting cuter and cuter. Can you believe your little man is almost 2? And I know from reading about your life, laid out so openly and honestly, that you do a great job of enjoying him -- even though you do your fair share of worrying -- you enjoy him so much for who he is. And who he is is just perfect. Thank God for little Dylan. He's certainly made an impact in my life and many, many others. Thank you for your blog. -Tara

Mindy said...

I have to wonder why the 2 year old eval scores are so important and why they are being sent to his future preschool. Will Dylan start school at 2.5 years old or at 3? So much happens between 2 & 3. The scores at 2 are totally irrelevant to preschool. Is there a 2.5 year eval? Does the school do an eval before he will start? I'd push for those, not 2 year old scores.

Tausha said...

Sam's evaluation is next week as well. I just figure what they tell me will help me to know what to do better to help him and what areas I should focus more on. For some reason it doesn't bother me anymore. I figure he will do it when he wants to and yes it will be behind everyone else but I already know that and there isn't much I can do about it but help him the best I can. Not sure if that helps or not.

Megan said...

I've read your blog. It is very interesting to follow will I wish could say more about it. but I'm not a mother yet. I'm looking forward to read more about your post.Thank you

Jen said...

In my humble opinion if you are going to embrace the therapy services than you are agreeing to the evaluations. I like to know where Little J fits on the scale for two reasons. The first is to validate what I know about him. If I believe his gross motor skills are at a certain level and the "professionals" agree then I feel that I am indeed able to trust my evaluations of my child. The other reason I like to know the outcome of the evals is so I know what I need to work on with Little J. I know that practicing walking with him is easier than encouraging the use of a spoon. I simply like to know. However, I refuse to let the evals rule my life. I come back to I know and love my child better than anyone and everything I do is for the betterment of the family. Like I do with all my children - love them, encourage them, praise them, cheer them on and pray for them. After all that's done the scores will still be there for better or worse.

Pamela said...

You have to enjoy while he was a baby. He is very cute and lovely. I love your post!

Rachel said...

I agree...you don't NEED to know and if that is your choice, they should respect that and really, does anything change once he is in "school"? You are still his parent and number one teacher and there needs to be respect from both sides and if you don't want know, they should continue to respect that...even when he enters preschool. Stick to your guns and enjoy that sweet, sweet little man!

sara luke said...

Oh my word . . . do they give a cuteness score at all? Because he'd definitely be off the charts there! I dare anyone to look at him in those pictures and NOT smile!