Fighting Failures

Parenting Micah has been a journey that has it's own set of ups and downs. It's parenthood on crack. The downfalls are so much lower and hit so much harder that the upswings are even more joyous and celebratory than normal. And I'm talking celebrating things like climbing a 6' chain link fence. There's so much there to be thrilling over that the fact that he could easily plunge head-first onto a very large rock and suffer a severe concussion (or worse) barely registers. It does register, mind you, but barely. You see, Micah is just 5. What other 5 year olds climb 6' chain link fences? But there's more. He has low muscle tone, he has impaired motor skills, and he has the mental capacity of a 2 year old. Climbing anything is much more difficult for him than for any other 5 year old, and yet he thrills to do just that. And we're right there rejoicing with him. Scared out of our wits, but rejoicing nonetheless.

But there are the downfalls, too. The things just mentioned make so many things just plain impossible for him. And his lack of speech has been a source of concern and frustration to us for years. Will he ever talk? I have every confidence that he will. I have no idea if it'll be clear enough to be understood by anyone outside his immediate family though. Or even when the msyteries of speech will reveal themselves to him and unlock the potential that lies inside him.

Without speech it's so very difficult to know what he knows. Can he count? Does he know his colors? Has he any clue that an alphabet exists? And yet I know he's incredibly brilliant. The dog count in our house changes from week to week. Literally. And yet when I let the dogs outside, he will stand at the door and yell until every last one is in. He's aware of the changes and knows which dogs they are. Things like that amaze me. I have no idea what's going on inside that head of his, but I know his wheels are turning, and turning fast. Speech could do so much. And yet, it's just not there.

I found a book called Schuyler's Monster about a father's journey with his wordless daughter. Wow. Just wow. It's my life, and his life, and her life, and Micah's life. The ups and downs, the heartache and hopes, the fears and frustrations. But this family was introduced to communicative devices and it unlocked a world of words for Schuyler.

We've been asked by the Downs clinic and therapists if the school uses any communicative devices for him. I've asked the school, and everyone who brings these topics up, what devices they would be. The answers all seem to end in language I'm not familiar with or some sort of vague tried-and-failed mumbo jumbo.

I hate that I've not explored these options any further on my own. I feel I've failed Micah somehow. Why didn't these very people tell me exactly what was out there and allow me to make a choice for my own son? I'm so frustrated that there could be something to help Micah convey his thoughts and feelings, and yet nobody told us. And I never found it myself. But now I know.

The thing that has me most frustrated is the fact of finances. I know for a fact that these devices aren't cheap. And I know for a fact that schools are expected to provide these for their students if necessary. Which makes a lot of sense to me why the whole fancy talk and mumbo-jumbo happened when I questioned about these devices. It looks suspiciously like they wanted to turn me off of something that would make them spend a small fortune on my child. I'm not saying that's how it was, but you have to admit that it looks shady, right?

I called his preschool today and asked if they had one we could borrow. I'd want to know if it's something he could be coerced into using before pursuing anything for sure. They transferred me three times before mumbling something about "through the Harrisburg office" and "waiting list."

These people don't realize that my dander is up. Mama Bear has come out of the shadows and is on a rampage. We have just over a month until school begins and I'd like nothing more than to have him start school with one if he will use it. Or can use it. And in this month we've got to get our hands on one and have time to try it. I pity the person who stands in my way.

My next step will be to call his kindergarten tomorrow and ask if they have one. And then his services coordinator who's in charge of weird thigns like this. And I may even call the company that makes these and ask if they ever loan trials out. I will explore every option that I can possibly think of until I get some kind of instant satisfaction.

If I don't fight Micah's battles, who will?

36 comments:

Trisha said...

You go! You are the advocate for Micah and the schools should be providing things for his education. While I do not know what devices that are speaking of - and I do know that many are very expensive - I do know that one method is a picture board. Pictures of things Micah knows and can point to when/if he wants them. I know they make these commercially but I would think that you could do similar things with your trusty computer, a board, and some velcro. I also think they progress into putting pictures into sentences and stuff like that. I don't know all the particulars. You could find out if he knows colors - ask him to point to the red square - etc.

Just a thought while you are waiting for info on the more hi-tech stuff.

Allison Says said...

Good for you, Karen. You should fight for him! I look forward to hearing how you get something, because I know you will!

He looks like such a happy boy. Always smiling and enjoying himself (even if it's scary for you).

Michelle said...

Oh, I never even thought to mention the assistive communication devices. They rock! There was a boy in Mister Man's preschool class two years ago who had pretty severe Downs (MUCH more so than Micah) where they used it, and it was hugely effective for him. He'll obviously always have a 1:1 aide, but it helped him communicate and be part of the class and show what he knows.

Here's hoping you don't have too a hard time finding one (and it sounds like your district is giving you the run around -- for shame!). If your district isn't helping and you want some other clues on some things that could help Micah, let me know. I'm pretty good friends with many of the teachers at Mister Man's preschool, including the one who I know has used said device (and I'm sure other things) in the past.

Good luck... and watch out people!

Fishsticks and Fireflies said...

Karen, I cannot even fathom the things that you must worry about on a daily (or hourly) basis - particularly when it comes to Micah . . . I think you are a fantastic mother, even if you don't feel like you are always right on the ball!

If the school district is unable to help you right away, I am wondering if the county's EI office might?

And if we need to hold an Internet-wide bake sale to fund the purchase of a device, put me down to bake a boat-load of cookies!

utmomof5 said...

If don't fight his battles no one will, that is why you are his MOM!!! God has a plan like that :)
Let me know if you have that internet wide bake sale metioned in the comment above -- I will bake my little heart out for that boy!!

Melissa said...

Sending (((hugs))) and kick ass vibes~~~~ your way!

OHmommy said...

You know, I read the reviews about that book. I think I will pick it up tomorow. You should write a book too... don't you think? HUGS

The Sports Mama said...

Have you any idea how amazingly inspirational you are? How much other moms look up to you? How we pray for just a smidgen of your inner strength, to get through just an ounce of what you go through daily?

If I've never told you before, you leave me in awe. You make me strive to be a better mom. And I love you and thank you for that.

Andrea said...

That picture of him is too cute. It is like he is clapping and saying, "Yeah Mommy! You go Girl!!" He is such a cuite.
I could only imagine the frustration, just breathe!!! I think that the message board that someone else mentioned sounds great. You could even make one look like a toilet and he could bring that to you when he needed to go!!! Maybe?? :) I hope you find one soon!! I am sure his little mind is running wild with ideas and things I bet he wishes he could tell you.

Karen said...

Oh Karen, I feel your battle!! I worked with people with disabilities for years before adopting my four children. Everything is a fight. There are a lot of options for "facilitated communication." There are things you can do in the interim, until you win this battle.

My son was born anywhere from 6 to 10 weeks early. He will be turning 7 in August. He is the size of a four to five year old and is developmentally delayed. He is just now starting to really try and talk. He is really hard to understand still, but I am so excited that he wants to. We have been using the PECS program through the school.(I think PECS stands for something like Picture Enhanced Communication System.?) Similar to what Trisha was talking about.

When we moved from one state to the next we lost a ton of services because one state will provide them and the other will not. Where we live now, they wanted to put him in a self-contained classroom with kids several years older than him and more than twice his size. When I would not allow that and insisted that they provide him appropriate services they hired an aid to help him. (He couldn't stand her.) He got lost in the shuffle a lot and I got tired of fighting a fight I didn't think I could win. So, I pulled him out of school and starting home schooling him. That has worked fairly well for us. I am wondering how long that will work.

Keep us posted on how get what you need. I would love to know what works for you!!! I admire your strength and tenacity. I need to find a little more of thoes two things.

pb&j in a bowl said...

You go girl!! I think you are a wonderful mom and Micah is blessed to have you.

Gina said...

Keep fighting, girl! I don't know anything about these devices, but if they make communicating even a tiny bit eaiser for him, then they are worth the battle. I understand the frustration of fighting, though - after mr b's accident, we had to fight for everything and it was infuriating.

Flea said...

I was subbing in preschool quite a bit the last year and there were a couple of the devices. They were fairly simple - something of a cross between an old Speak'n'Spell and Leap Frog's spelling device. It was great for the kids who used it.

Flea said...

Have you tried any of the Leap Frog line for Micah? I've given all of ours away prior to moving or I'd ship them. Don't know how much they'd help, but you might take Micah to WalMart and let him play with some of them, see if it sparks anything.

Karen MEG said...

Karen, you're not failure. AT ALL.
You get your dander up; Micah's mommy is on the rampage! Good for you - Micah couldn't ask for a better mom or advocate. I hope the device sparks something for him.

Bia said...

You are Micah's champion, and you continue to inspire all of us who visit your blog.

God bless.

Caution said...

Yeah for you!! Your school district has no idea what a force you are :)

My neighbor found that almost all her battles with school were instantly won when a lawyer from The Arc wrote a letter. It really was a friendly letter just reminding the school of her boy's rights. But because it came from a lawyer and it came from a strong organization, the school IMMEDIATELY acquiesced and found the resources her son needed. She had only one conversation with a representative from The Arc and that triggered the letter.

Burgh Baby's Mom said...

1. You ROCK.

2. I can only imagine how frustrating this whole thing is for you. Having met Micah, I know first-hand that he very obviously has the gears moving at top speed. He most definitely understands his world, and the fact that he hasn't flipped that switch to start telling you about it has to be exhausting.

JennyH said...

Max just turned 7 last month. At the age of 5 he maybe had a couple or so simple words- the important ones like- NO! He still does not really "talk." He does have several word now but usually only 1 at a time. Even then, I don't know if people could understand him if they didn't know him. He recently said MOM- and now says it ALL the time! He tries so hard to say stuff and repeat words. But there is a break down somewhere along the line. He does have aprixia- Micah may too. It's the motor planning issues.

At school Max does have a communication device. He does not really use it though. He knows it is different from everyone else. His is a device for either 4 on up to 16(?) pictures. I think he has 8 in it right now. He pushes the button and it says the word or sentence. It is recorded (obviously) and the pictures are personalized. Everything on it can be changed to meet his needs. Towards the end of the school year they were going to try it again with him. He loves OT and all the activities she does. So they decided to start off in there with it. He used it every time - or so they tell me!

I had no problems getting it for him- actually they recommended it. They asked me for permission.

Good luck on finding something. But remember Micah may have his opinions about it and not use it!! I know how frustrating it is when they can't talk. It does make you wonder what they are thinking inside that little head of theirs.

Oh, and does Micah use sign? Max uses lots of signs and that has helped SO much. It also helps with colors and counting, etc. I know that Max knows all his colors, most if not all letters, and is able to somewhat count all with signs. He has started on sight words and so far so doing pretty well.

Tranny Head said...

Good for you, mama. You keep on fighting for that boy ... just looking at that picture there shows there's more going on in there behind his eyes! Good luck - and keep at it!

Cecily R said...

The LAST thing you are is a failure. There is no one I know (and I think I know you fairly well even if it's not IRL), no parent, no family who is better for that boy than the ones he has.

Madame Queen said...

Good for you! I imagine at times it can be so overwhelming! But you're such a great mom -- Micah's champion -- so I'll know you'll do what needs to be done for him.

Colleen said...

I could only dream of being as strong as you are! Don't let them get you down. Just firmly remind them that they have a responsibility as a public school (funded by your taxes) to provide the services Micah needs. I wish you lived in my county because they seem much more accommodating to any family that needs help (and I did see a family with a child that may have had Downs at the same place where Gavin was being evaluated, so I'm not just talking about kids with less severe speech/developmental delays).
And if your school system still balks? Well, you know I'm always available for depositing flaming bags of poop on doorsteps of those who dis Micah (in fact, still waiting to hear if you need my services for that other individual we were talking about the other night...ha ha).

One other observation: Micah is considered to have low muscle tone? Really? I mean, we've seen him naked and he looks like the size and build of Gavin. And if he can scale a dang 6-foot fence, he's got WAY more muscle tone than me! :)

Give him a hug from us...we can't wait to meet him (or you. or your other kids. or Sam. or the dogs...especially Tink. or even the Cavalier That Wouldn't Die).

caramama said...

You go, Mama Bear!!! Fight the good fight. And don't beat yourself up about not learning about it until now. For goodness sake, you can only take on so much at a time. From what I can tell, Micah seems to be doing great. But I understand that it must be soooooo frustrating not to be able to communicate.

Good luck kicking you know what with those schools!

Karen Deborah said...

My first visit and you and your family, dogs, sweaty fat, and loose girls, are right up my alley. Your son is precious and worth being a mama bear over, no apologies. He is a beautiful child. Sounds to me like he communicates with you loud and clear. Never, never, never give up. True then and true now.

imbeingheldhostage said...

Hey, about Flea's comments on the Leapfrog stuff. We still have ours and if you want it, it's yours!
I wish I could find the words that would help you through this, but for now, I'm thinking that you ARE his champion and you have other kids that need you too. You are doing a fantastic job giving those kids a real childhood and there's no shame in that. How would you know what you're "supposed" to be doing if agencies that specialize in Downs don't tell you? You go get 'em Mama Bear, but don't bite yourself. You're awesome!

jessica said...

you are the best mom, karen!

Leanne said...

You go girl.

I keep coming back here to read what you have to say and to keep in touch with Micah. You're an amazing woman, please believe that.

I'm in for the bake sale too, and PLEASE let us know how this fight goes, we're all rooting for you.

Sandy C. said...

You are such an amazing mom and writer. You should certainly publish your story. I love that nothing stops you. Good for you! Keep us posted, because I know we're all rooting for you.

Michelle said...

I think as moms we are too hard on ourselves; we'll always be second-guessing what we did, or didn't do. We'll always think we could have, should have, done this or that, or started this therapy sooner etc. Don't be too hard on yourself, although it's easier said than done, I know.

Have you tried using ASL w/Micah? You said because of his lack of speech you don't know if he knows his colors or letters, but can he point them out to you? Instead of saying "what color is this?" show him two colors and ask "which one is yellow?" that was how I figured out Kayla knew more than I realized before she started speaking.

do you have the book Early Communication Skills for kids w/Ds by Libby Kumin? I have it, but haven't even read any of it yet!

We also have this DVD: http://www.downsyndromefilms.com/discovery.htm but I have only watched a little bit of it - I could send it to you if you're interested?

We also use www.starfall.com with Kayla and I think that really helped her learn her letters and the letter sounds.

Good luck with the school; seems like they should be able to provide a communication device to Micah!

Poltzie said...

Micah is so lucky to have you!

just jamie said...

Oh Karen. I often think of your family, and the blessing you were given with Micah. What a gift he is to you and your family, and what a gift you have been for him. I've heard many times before, and I'm beginning to believe it, that our children choose their parents, much before they actually become ours. Micah has most certainly chosen well.

Karen said...

Keep up the fight. You are so strong and an amazing spirit. Micah is so fortunate you are his mother!

Tootsie Farklepants said...

You are an amazing woman. Bravo!

Debbie Yost said...

We started using the PECS program with Peanut. Her teacher is introducing it at school and once she gets past the first couple of stages she will start using it at home as well. Her teacher said studies have shown it has been more successful at encouraging vocalization than sign language. I know many people love sign language and I am not knocking it at all but Hubby and I are concerned Peanut will begin to rely on it and then not talk. Her teacher tends to agree with us. We used it when she was younger and she still uses some signs but we don't encourage more and more signs. In addition, with sign language unless you are familiar with HER signs, you may not know what she is saying. So, if she is being babysat or at the grandparents, they may not understand her. Obviously, it helps that she has her siblings with her most of the time. However, the PECS program uses pictures and eventually she could talk in sentences with the pictures. She would take it with her and everyone recognizes the picture so she will be able to talk to anyone and they would understand. This is not a long term solution, but until she starts speaking with more than uhh and grunts, it is an encouraging alternative for us. I'm excited for school to start back up so she can start working with it again. She was making some progress at the end of last year.

wordsofhisheart said...

Yikes. It sounds like you're writing Noah's story. He's 5 - I've suspected apraxia for about a year. His therapist is "not an expert in apraxia, and because of his Down syndrome, she's just not sure . . ." It's so hard to know whether to just take a step back and give him time or to get aggressive and chase after a voice for him. Thanks for posting your experience - I'm looking forward (sort of, with dred in a way - it would be SOOO much easier if he would just wake up tomorrow speaking. It's hard to go to plan B apraxia when I'm still getting used to plan A Down syndrome) to reading more.

Blessings,
Alyson