Lea, what tough information for you to receive. So much to process and take in all at once. Have you been able to speak with the people that tested the kiddos and wrote the reports? I think I would be able to start processing the information better in a conversation?? Please let us know if there is anything we can do other than always being a bunch of shoulders to lean on!! Big Hugs!!!!

Shiloh--Proud Mom to:
BGG born 2/04
B born 7/06

So I say you don't need to have any conversations with anyone until you feel like you're ready. You've had lots of "diagnostics" thrown at you in the last couple of weeks, it's gonna take a while to process everything. In the grand scheme of things, they are the same kids they were before you opened the letter.

Raechel, Mom to Abigail, Sophia, and Gabriella 8-4-05

I definitely would not be able to take all of that information in without speaking to someone- be it the people who tested them, or their pedi, SOMEONE who you can ask questions to instead of just staring at that piece of paper.

I don't have any advice, just ((hugs)), and know that we're thinking about you.

Oh, and I wouldn't post anything on your blog until you're good and ready. I sure wouldn't want to be answering questions just yet...not until you get some answers of your own.

((hugs))

Rowan, Elijah and Joey April 07'@26wks
Kadence 03' Benjamin Dec 09'

Wow. That's rough. Okay, breathe. You know that it's hard to get a correct IQ on a small child.

I've been trying to think what I would do in your shoes, and I think the first thing I would want to know is, "What now? What programs do you have to help my children reach their full potential? Where do we go from here?"

And I think I told you before that they are the same children today that they were yesterday. Nothing has really changed except that piece of paper.

I'm sorry that you keep getting kicked in the teeth, one right after the other.

Michele
Sarah, Gregory, Amanda
born 1/22/04 at 35w1d

Our surprise baby Austin born 06/15/2005

www.fourtimesthefun.blogspot.com

Oh honey! I honestly don't think those tests can test IQ's accurately, either. There is no way that a child at that age can be judged. I am sure that my children would test pretty low just because of their age. The diagnosis sounds VERY harsh. It would be crushing for anyone to hear.

I agree about not posting until you have A LOT more info and are ready to deal with all of the questions that you know will be asked. And you have some more answers for yourself.

I wish I could say something to help, just know that we are all here to listen whenever you need us. I would definitely try to get all the info that you can.

Why did they have a Preschool and Primary Test when they are so young? I just don't get how they can plug kids into a catagory and label them.
Your children are beautiful and you are the best advocate that they have. I know you will do all you can to help them and get the right info to help them.

I think the open mouthed breathing thing is just ridiculous! What is that all about? Take a deep breath and keep moving forward.

Love, Becca

Check us out at...thepingels.com

Lea:

First, (((((((hugs)))))))

Second, take a deep breath and keep on breathing.

Third, the first poster was right -- they're the same children they were before you got that report.

Fourth, having studied counseling and having administered IQ tests, I can speak candidly to the fact that IQs cannot be readily assessed prior to verbalizations. The fact that your babies are not yet speaking indicates that this is ludicrous.

Fifth, you have been blessed with two older daughters and with a loving church family. Go online and find out what kinds of personal exercises and therapies have been effective in engaging children and working with them when they are suspected of having these types of issues. Then, get your older girls to assist you and get some church friends to jump in, too. Remember that the m-TV gal (McCarthy??) has pulled her son from the brink of autism and that this does not have to be a death sentence -- it may simply become a wake-up call.

Sixth, let us help you. If you need the zip-up suits in a larger size, send me the measurements and they'll be your's. If you need some research, let me know. If there's anything in the world that I can do to help, please send me a PM.

And,

finally,

(((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))

Love,
Cat w/3 Kittens
Caidan, Carina and Caeleigh
Born at 31 weeks, 1/8/04.
It is better to have loved and lost, than never to have loved at all. In memory of Carina, who was greatly loved.

http://b3.lilypie.com/bDA

Lea, I'm so sorry you got those crappy evaluations. I agree with the PPs. There is no way they can assess IQ levels accurately on non-verbal kids. The autism diagnosis for Kaedence wasn't a surprise for you but probably it isn't fun to see the official report. In previous posts you said your kids are set to start school soon. Hopefully that and all their therapies will jump start their verbal skills and you will be able to get a more accurate assessment done later.

Lori

http://yesidohavemyhandsfull.blogspot.com/

I'm curious about how they test IQ on non-verbal kids too. One of my boys was almost completely non-verbal until about three and now that he's had some intensive speech therapy and has made improvements in expressive speech and auditory processing, it's clear that he's on-par with his brothers intelligence-wise. You wouldn't have known that before though. I can't imagine how they could have ever evaluated that when he couldn't express anything and wasn't processing verbal commands.

Kristen

Lea, that's a lot of information to take in. I know I'd want to not share it with our family either, as they would tend to be excessive in their reactions. I don't have any advice to offer you, but it seems like you have gotten so much good advice already from the people here. And we're always here to support you. (((hugs)))

I too think it would be hard to evaluate small children. I recently took my three in to be evaluated bu the school system for a variety of reasons and I remember thinking that there was no way they could get an accurate evaluation from what they did. There are things they commented on that they said my kids "can't do" that I know they can, etc... they just didn't react well in a new environment, with strangers, without their mom and siblings, etc. But I am working towards getting services for particular areas, so I will deal with the evaluations for now.

I had to laugh at the defensive parent comment. I think of you being more of an advocate to your children than anything else!

Kim

yikes - that is hard information to digest! I can only hope this is exaggerated because they are so young. You have had a lot on your plate lately and you are so strong to handle it all. I would probably be curled up in a corner somewhere. My thoughts are with you.

Lea,

I'm so sorry you've had yet one more thing thrown at you. Like all the pp's said, they are still the same children they were before that letter. And I agree, how the heck can you test IQ on a non-verbal child??!!

Use those diagnoses to you advantage. Get all the help available for Kaedence - it can't hurt. If anyone can fight for your kids its YOU. I've been following your blog and you are one strong woman and a inspiration for many. I don't know that I could hold up if I were in your shoes.

http://www.brianandcharlie.com/blog
^Alexandra^, Brian, Charlie 07/28/2003
[/

Lea,

Im so sorry for the diagnosis you received. I dont have any wisdom or advice, I just wanted to tell you, your family is in my daily prayers. You are an amazing mom, and I always read your blog to get motivated. I'm truly impressed at your abilities. God Bless you and your family. ((((HUG))))


Best Wishes,
Kristine

GBB 01/13/07

I have to say that besides telling us, I don't know that I would tell family/friends unless they NEEDED to understand what was going on. I hate to label kids or anyone. I feel like once someone is labeled, it is harder to get them to break out of it or get family/friends to let go of that label once they are past that.

I am sorry also. Prognosis like that would put me in a deep blue funk and who has time for that?


You are a smart woman and mama. You will know what to do when the time is right...and I need to show you a picture of my cousin Nan sometime b/c you and she look incredibly very much alike. You do have a twin!

Kind regards,
Melody
^bbb^ 11-03-03 at 22 weeks
BBB ^d^ 1-08-06 at 30 weeks I am an earthly mom at last!
keep up with us at www.lodyp.com

I'm sorry you received this kind of news. You seem to be a very strong person...try to stay that way. You obviously do everything possible to help your kids and with the continuation of that, your babies may completely stun those medical professionals by proving them wrong. I bet your little ones take after you...strong willed & will fight for what they believe & want

BTW, I'm a TOTAL mouth breather. It drives DH nuts!

Check us out at:
http://thewrighttrips.blogspot.com/

Isabel, Jasper & Jonah were born on July 1, 2006

And my twin angels in heaven ~
Olivia Layne - 2/13/05
Elijah Cain - 2/13/05

Ah, I wish I had words of wisdom to give you or comfort at the very least. What a slap that must have been indeed.

So what does come next? More tests or is it therapy and help with the diagnosis?

How are you holding up? You are such a great momma and I know you will be the best advocate for your children they could possibly hope for. I am rooting for you.

Laura & Don
BBB 5/05
www.ourbighappy.blogspot.com

"

Lea, I don't even know what to say. I can only imagine that this is all devastating and completely overwhelming.

I totally understand not wanting to open up the floor for discussion with family yet. I'm just glad you've got folks here to listen. We're here whenever you need us. And if you ever want to call and talk, just pm me for my cell #.

BBG (1/21/05) at 36 weeks

Lea,

Okay, I just scrolled down and read a few of the responses and have to say that OF COURSE YOU ARE A DEFENSIVE PARENT. We all are. Or at least we should be. What kind of parent would look at a piece of paper like that and NOT demand an explanation??? The person who diagnosed may know a few things, but she totally doesn't get parenting. That's a horrible thing to say. And it implies that on top of all she just slammed you with in regards to your children, you have a problem, too. Ridiculous. I'm not a confrontational person, and I am sitting here wanting to TAKE HER ON.

Okay. That all being said, I just want you to know that I (and many, many others) think you are a a fantastic parent. Your husband is wonderful. Your children are beautiful. One of the things that good parents do (as I have learned from you and others) is listen to their instincts and trust them. You will know what to do and when. You just will. You'll know which avenues to take, when to double back and begin again, and when keep going. I don't have any advice except to say have faith in yourself.

And...we are all here to listen.

Susanne

gbg @ 31.6
5/2006

Lea,

I will reiterate what many have said already - YOU are their mother and YOU know them best. My kids have been thru some of the same "tests" and it's funny (not really) because while my kids CAN do most of the skills, it's very obvious they have lower muscle tone and don't always do things correctly. They get the job done and the stupid therapists puts a check mark in the box, even though it's very obvious the skill isn't being done correctly, but it is getting it done. Tests drive me crazy because I feel the therapists concentrate SO MUCh on the tests and scores that they forget to look at the individual child underneath.

You must remember that what the therapist(s) may be seeing when they get tested is truly only a snapshot - and your children are not in their natural environment. Of course, they will act differently than when they are home and the therapist may truly NOT be getting an accurate account of your children. Therapists are also supposed to talk to the parents about their children's skills - especially at such a young age. If they did not do this with you, I don't feel it is an accurate diagnosis for your children.

I agree with the fish oil. We use the Nordic Naturals Gel "balls" as my kids call them. It truly made a HUGE difference in Andrew's cognitive ability and his speech (I started giving it and didn't tell anyone, not even my husband and around the two week mark, everyone - therapists, hubby, family - started commenting on how improved he was. After about a month, I told dh and ONE therapist, but no one else. He went from about 6-8 months behind to keeping up wiht his siblings/peers).

You have a wonderful support system here, and all around you. USE IT. I would call around and ask local churches if they have any resources - you may just find your new church home this way.

Carrie
and the crew...
Tyler 9/01 (9)
and Noah 10/03(7)
Andrew, Jason, and Tessa (5) 11/05

Im so sorry you received this letter, and Im sorry you didnt get the support from the people that evaluated your children.

You are not a reactive parent, you are a parent, period. You are entitled to ask any questions you like, and even rebuttle their observations. They studied your children after 1 hour of observation, you are with them 24/7 and know them better than ANYONE. They may have caught them at a "bad" hour (sleepy, hungry, tired)...

PT gave me a diagnosis after working for a year with my dd, twice a week. They told me she was delayed in some areas, because she couldnīt do certain things... For example, she couldnīt go up and down the stairs... The PT never went up and down the stairs with her, and when he told me this, I took her up and down the stairs and that part was corrected. Another example, he told me that she didnt know how to share and didnt have social skills... My dd was diagnosed with a compromised immune system, and because of this, the dr. doesnīt let me take her anywhere with kids, so ofcourse she doesnt know how to share, how to play with other kids....

My point is, you should be able to discuss every single detail with the people who evaluated them, you should ask them to be open about discussion because maybe they can do some of the things they crossed out they canīt, and revaluate.

good luck

Monique
Mom to 26.5wk triplets, born 09/14/06
^Nicole^
^Daniel^
Nathalie

Hi Lea,

I was just quickly reading through this, if I am right your kids are 2 1/2 - they are too young to get an accurate measure of their intelligence, you can get an indication BUT your children clearly have confounding factors as you say they are non-verbal - therefore they can`t answer questions and quite possibly couldn`t comprehend any verbal directions on what to do. I was (pre-kids) an educational psychologist - although I haven`t tested anyone below 6 and used the WISC not the WPSII (I can`t remember much of the WPPSI - I wish I could) anyway, concentrate on what you are already doing - working on areas which can benefit from the therapy you are doing, such as their speech.

I wonder why they are testing for IQ so young? I always had the perspective that if there is nothing to gain then nobody needs me to assign a number, unless it is needed to gain access to special ed schools,etc. but your kids are to young for that. I just wonder why this was felt necessary? You don`t need to answer, just take the results and just do what you`re doing, you`re such a great mum, your kiddos are lucky to have you in their corner. How many times did this psychologist see your children even? Are the behavioural observations even typical of Kaedance? I`m sorry you have been hit with this too, don`t let it get you down too much. Wish I could send you a real (((hug))) you seem to be going through so much at the moment.

Sandie,
mum to dd (2002), ds (2003) and bgb triplets (2006)

Attachment #1, ( file)

I know this sucks!! It makes you feel like the world is crumbling around you when you hear those words. Defensiveness is the first thing that comes out. They must have scored wrong, maybe its on the wrong kid, my kid was tired and not herself....... I know because that is how I felt for a few weeks after the dx.

When my dd had similar testing and also scored in the mild mental retardation range, it totally threw me for a loop. I knew the PDD-NOS dx was likely, but totally unprepared for anything else. A huge reason that she scored so low was because at the time she was non-verbal. She also was making noises, hand flapping, darting around, no eye contact, threw many tantrums...... I will tell you after I had a little time to process everything, it made me realize it was really the best thing at that time.

I know now one of the main reasons they test so early is so people can get more services. Our insurance covers very little therapy for the dx. autism, but because of the mild mental retardation we were able to get her on a waiver. The waiver has helped pay for ABA, and helped with OT and PT. So what I am saying is try to use this new information and make it work for you. We have been doing about 20-25 hour of ABA a week plus preschool and OT and Speech. Its a crazy schedule, but its working. The waiver has to be reviewed every 3 years and at this point I don't know that she will even score in the MR range in another year and a half. Very bittersweet because that means she is doing well, but will drastically limit the services we can get.

The hardest time in our journey with this so far was from 2-3. Getting the diagnosis, fighting to get services, not knowing what this new life was going to be like. After our dx. I quickly learned the best resources were other moms going through this too. They know the therapists, doctors, waivers......better than any medical person I have found so far. We are now a year and a half later and it is already so much better. Hang in there.

Katie

"

Lea, I am so sorry. First take a deep breath and put the paper work back in the desk drawer. You do not have to deal with this all at once. Okay great now I have lived in GA way to long, you know do what Scarlett does, fiddlede I will worry about that tomorrow. No I am not saying ignore it, I am saying to take a day or two to take it all in, then when you are ready to comfornt the issues pull it out and start at step one, what do they need the most, therapy wise, education wise, and start from there, one step at a time, baby steps if you may.

love you chick

BBG Triplets Born March 31, 2004
31 weeks three days
Douglas
Kalie and
John Michael