Happy Independence to all of you American’s out there!!  This is one of my favorite holidays mainly because there are no presents required to buy .

Sadly, for many people out there this holiday sucks.  And it starts weeks before and ends weeks after the actual holiday.  Those of you out there with kids like my son know what I’m talking about.  The noise from the fireworks is brutal to those who have sensitive ears.  Even Rachel is affected by it.  It hurts them physically to hear the pops and booms.  It frightens them because it is not normal.  One of my fellow bloggy friends mentioned that last night her son got so upset he was vomiting.  As parents there isn’t a whole lot we can do.  We can’t march across the street and tell our neighbors to quit with the fireworks.  So what do we do!!

I found an article that has a little bit of help.  Honestly, there is only one of these that would work for us…the tv.  But some of you may find some tips that could work for your family members.  And don’t forget those furry family members.  Our pit bull is terrified of them!  So she sleeps with us.

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Parent Tips: Surviving 4th of July Fireworks
Author: Shelly McLaughlin, Pathfinders for Autism

They’re the symbol of our independence and bring joy to the faces of many. But, for people that experience intense sensory input, they can be thunderous and blinding. And each year so many of us stop and ask ourselves, “Do we go?” “What about our other children who really enjoy fireworks?” “Do we think our child can tolerate getting through this?”

Maybe there are some things we can do to help make this traditional festivity an enjoyable experience for the whole family.

Invest in a set of headphones or earplugs
Earplugs to block noise – not the ones we use for swimming. Think construction worker grade or Etymotic earplugs. Or use a set of headphones. You can even play soothing or patriotic music through them.

Turn up the TV
Sometimes we live near a venue that hosts a fireworks display or our neighbors decide to create their own spectacular show. So what do we do when our homes are invaded by the noise? Try playing predictable music or a favorite TV show that will cover sound. It might even be a good time to whip out that Playstation.

Preview the show
By their nature, fireworks are unpredictable. But we can try to prepare our kids to better help them know what they can expect. Sparklers may not have much sound, but they look like mini fireworks. You can also watch videos of fireworks displays. Here is a video of the fireworks show at Disney, accompanied by Disney music. This link to Pyro Innovations might be of particular interest to our kids that want to know what goes into the production of a fireworks display. There are multiple shows to download and they include clips of the crews setting up.

Watch from far away
A grocery store or other nearby parking lot, or the side of the road with the windows rolled up may provide a comfortable distance.

Take comfort items
Pack items that help soothe your child, such as a weighted vest, favorite toy, snacks, or handheld game.

Be mindful of the entire day’s schedule
Before the fireworks show, is there a party or a picnic? Are there breaks for downtime in the day? If it’s an overloaded day, fireworks may just put your child over the edge. If fireworks are your priority activity for the day, consider limiting some of your other planned activities.

Give that safety speech
Don’t miss this perfect opportunity to talk with your kids about fire safety and the dangers associated with explosive devices. Be cognizant too that some of our dislike of fireworks may come from anxiety or fear of being hurt. Reassure them that you are obeying the rules of safety.

And of course, be prepared that what worked last year, may or may not work this year. But isn’t that what makes our lives such an adventurous journey?

© 2009 Pathfinders for Autism

I had started out with one idea for today but it is going to take some time to put it all together.  I commented on another fellow friend/bloggers website and it reminded me of my aunt.

My Aunt Bonnie has a fragile x son who is probably in his 40’s now.  She lives in California and I don’t really have much contact with her.  Okay, I have no contact with her.  I would like to though.  She is hilarious.  I should work on that .

Anyway, she has her son at home with her.  He is probably about the same severity as Matt.  He is in the moderate/severe range.  He talks but not on topic and perseverates a lot.  He is potty trained to an extent.  He needs help with wiping and he has to be told frequently to go to the restroom.  Diarrhea is just a disaster!  So he needs a lot of watching over and assistance.  My Aunt Bonnie is married and stays at home with him.  My uncle works as a mechanic and can take him in with him if he really needs too.  But a fragile x person is a mechanics shop is a recipe for disaster .  My aunt also has a daughter who is in her 50’s who assists with him as well.  But she has her own family and works so the burden mainly lies with my aunt.

Before I had Matty, my aunt had a situation that made me realize just how tough it was for her to care for my cousin.  My aunt had gotten a speeding ticket.  With taking care of her son she had totally spaced it off.  Well, she got pulled over for speeding one day trying to get her son to an appointment.  By this time she had a warrant out for her arrest for unpaid fines.  Her daughter came and picked up her son and Bonnie was taken to jail overnight.

I know.  Horrible right!

Well, apparently not to my aunt.  The next day when they went to release Bonnie she refused to leave!  The sheriff told her that she had to go.  They couldn’t hold her any longer, the fine was taken care of, and she should go home to her family.  My aunt, obviously stubborn, sat down on the bench and told him, “No.”  The sheriff was shocked.  I mean, seriously, how many people refuse to leave jail!

My aunt told him, “You have no idea how hard things are for me back home.  I didn’t until last night.  Sitting in this jail has been the most relaxing and quiet day of my entire life.  All I’m asking for is one more night.  Just one to relax and regroup before I go back and tackle it again.”

Obviously, the sheriff couldn’t grant her wish and my uncle came and picked her up.  Last I had heard my cousin was on 2 or 3 waiting lists for group homes that my aunt had approved of.  She loves him very much and is very picky about where he will live out his days.

This story signified two things to me.  One, that fragile x, or any development disability, may seem easy on the outside but living it is no piece of cake.  And the second thing, respite is definitely necessary.  My aunt never had respite services for her son.  I hope she does know.  Getting a break is so crucial.  Could you imagine going to work one day and not getting a break for the next 20 years…not even to go pee!!

Though we don’t get actual respite services we do get a break.  Matty goes with his paternal grandparents every other weekend.  Rachel goes with her dad on those same weekends.  So we get two days where we can focus on ourselves.  And by the time the weekend wraps up we are re-energized and ready to tackle two more weeks.  If you aren’t getting respite please find a way.  Don’t go to jail to get it

Kevin and I got a little shock yesterday.  Austin has had some issues on the soccer field with catching his breath and feeling lightheaded.  We chalked it up to possibly being asthma and had him get into the doctor yesterday.  Well, along the breathing difficulties he is having a little chest pain.  The family has a long history of heart issues. So to be on the safe side the doctor ordered him to have some tests on his heart. 

Nothing makes a parents heart plunge faster than hearing the words, “I want to run tests on his heart.”  They got him in to the hospital for testing right away.  He had an EKG and some kind of pulmonary cardio test thing done.  The EKG can be read at our hospital but the other one has to be sent to the big city to be read by a pediatric cardiologist.  So we don’t have a clue as to when we will get the results.

In the meantime Austin is being sidelined in soccer.  He can’t play or lift weights or anything until we get the results back.  I feel so bad for him because he finally found his fit.  He found a sport he was great at and enjoyed.  He found an awesome group of guys to hang with and I feel are helping his transition to high school next year.  And his coach is amazing and so supportive.  I pray wholeheartedly that it is just asthma and he can go back to his team as quickly as possible.  I’ll keep you all updated on the results as we get them.

As most Mondays go, this one was not in the least unusual in the amount of weirdness that went on.  And for Matthew, that was not a good thing.  His grandparents have been gone for quite a few weeks.  So this was his first weekend with them since school let out.  So it all started with him coming home (Transition #1).

Rachel was gone with her dad and won’t be home until next weekend so that threw him off a little bit too.  I mean, come on, his room was actually clean! (Transition #2)

We also had our cat corner a stray dog in our back yard.  This poor pooch has been wandering around for days.  So we shut the gate to keep him in there until the pound can pick him up.  Don’t get too sad yet.  If the owners of this dog don’t claim him then we will take the dog that Austin has dubbed as Waldo.  (Transition #3)

I then took him to the woman’s home who watches him 3 days a week.  She is an Americorps volunteer who has worked with Matty in the past.  Well, he had already had such a nutty morning he didn’t want to get out of the van.  I had to all but pull him out of it!!  I finally got him out and got him to the door when I learned that his caregiver wasn’t home.  Matty was not happy to get back in the van and head back home! (Transition #4)

Luckily, about 5 minutes away his caregiver called.  She had thought she could beat us there and hadn’t.  So we turned around and went back.  Matthew was not happy!!  He was yelling at her.  He was yelling at me.  He was asking her where she was and telling me to go to work.  He had just had it!!

This boy has his routine and if you mess it up too much he is going to let you know about it .

Rachel thrives on my attention.  It’s kind of worrisome for me because I think it is a little more intense than just needing some mom or dad time.  She wants to be around us 24/7, with full attention, pin-pointed just on her.  Well, that is obviously impossible in our home and with life in general.

But the clouds parted and the sunshine was let in on Wednesday…to Rachel anyway .  I hadn’t mentioned yet but she has a new counselor.  I really like her.  She actually was the kindergarten teacher Rachel’s bio dad and I had picked out for her.  But she was offered a position at the high school as a counselor and she had to take it. Sad day.  But they are now reunited .

I hate the commute from my house to my office so if any of the kids have an appointment I just bring them into work with me.  So Rachel got to spend almost 7 hours hanging out in my office with me.  She got dressed up like a banker should.  She had me braid her hair.  She put on a pretty purple dress.  And for when she wanted to take a nap and not feel bankerish she put on glittery blue flip flops and soccer shorts under the dress   .   At work we have a supply type room with a desk in it.  I cleaned it up for her and set her up with my laptop.  She got to hang out and play games.  My coworkers were giving her little odd jobs to make her feel like she was working.  She was putting papers in the shred bin for my supervisor and making new account folders for me.   And she did take a nap after lunch.

Then we went to her appointment.  They are working on what her worries are and how to work through them.  She was getting so obsessive over calling me when she felt a hint of anxiety, that we had to take her tracfone away.  So we decided to tackle that first.

After her appointment I took her over to Sonic to hit happy hour.  Nothing like 2 slushes for $2.01!!  She had $5.00 burning a hole in her pocket so I ran her over to Target.  I learned she was wanting a glitter water ball.  She had been wanting it “for weeks and weeks and weeks!”  .  While I was there I splurged a little and bought a really cool puzzle.  It is really 8 Disney puzzles in one box.  There are 4-100 piece, 2-300 piece and 2-500 piece.

When we got home we attacked a 100 piece puzzle right away.  It was kind of hard!    I set up my laptop on the table and we found High School Musical 3 for instant play on Netflix!!  Netflix and wireless have been the best investments to get through the summer with the kiddos .  (For my facebook buddies I put a pic of her doing the puzzle and watching the movie on my wall yesterday) We did 2 of the 100-piece puzzles.  They were not simple at all!  Which makes it funner!!

I think all together we spent like 10 straight hours together.  We had a great time.

Did you know that there is some awesome stuff to be found online to help people navigate the special needs waters!  Today I wanted to mention one of my favorite handout websites: Super Duper Publications .  And we all know I’m poor so of course these are FREE!

There are 215 different handouts.  Some go into some deep stuff like What is selective mutism? .  Others go into what we think are ”stupid questions” and are too afraid to ask like What is a special education teacher? .

If you get some time go check it out.  You may learn something.  You might find something to share with a provider.  Who knows what you can do with 215 free handouts!

FYI:  You will need to set up a username and password but I don’t get spam from them at all

No, its not me this time.  This time it is Lauren.  We got the results of her ultrasound yesterday.  She has a small cyst on her left ovary.  She is a little freaked out.  It’s perfectly understandable after watching what her bio mom and I both went through.  And we ultimately had to have hysterectomies.  So I am sure she is worried that is going to be her fate.  To be 17 and having that looming over her head is probably really scary.  I know I would be freaked out. 

Her cyst is a pretty common thing.  Taking care of it will be an easy process as well.  She will be on the pill for the next six months to get her body in sync.  The doc thinks that that is what is causing her cyst.  Then at the end of December she will go back in for another ultrasound to see if it worked or not. 

In the mean time this girl is ‘tude city.  I never in my wildest dreams thought that the 14 year old attitude would creep back into our lives until Rachel got there.  But no!  Our 17 year old is a mess.  I don’t know if it is all the “adult” changes going on with school, college, friends, health, etc.  But whatever it is needs to stop or else she is sleeping in the backyard in a tent for a while

One of the things I hate the most about being a fragile x carrier is my depression.  I HATE it!!  Even with meds things sneak in and I can’t do anything about it.  One of those issues is feeling tied down.  I don’t do well feeling confined but most of the time I can adjust. 

I never wanted a cell phone because I felt like people could keep tabs on me.  I adjusted to having one after my car accident.  With Kevin being the son of a cop he didn’t really appreciate having a Sheriff calling him and telling him I had been in an accident and was okay.  He knew Sheriff’s had to lie until the party arrived on scene.  And I was okay…he just didn’t believe it.  So he had me get a cell phone so if I was ever in another accident I could call him and tell him I was fine…not the Sheriff.  There are times I want to throw it out the van window but I refrain and move on.

I think part of the reason I had so many engagements was that same trapped feeling.  I was engaged 5 times from the time I was 16 until I was 27.  Every other year (not literally) I had a new fiancé! Marriage scared the shit out of me.  There is no going back on that.  And divorce is never an option for me.  I will never forget how pissed I was when Rachel’s great-grandma told me it was okay to marry her grandson because if it didn’t work out I could just divorce him.  Yeah.  Ya know.  Marriage just doesn’t work like that with me.

And, I don’t know, maybe I never let myself be legally adopted because I didn’t want that kind of commitment.  After years of child abuse I already knew that I couldn’t trust those in authority.  With no legal family ties, if I was to get hurt, I could cut that person out without feeling much guilt.  We all know I could never do that and that if I did I would feel guilty as hell.  But it is nice to think I have that option.

What is odd in all this is that I don’t feel trapped by the kids and or by fragile x syndrome.  I feel free when I’m with my kids.  But I’m getting off on another subject entirely.

Very, very slowly that trapped feeling has been eeking back into my life.  It finally peaked last night.  I was driving to get the girls from my parent’s house and I just wanted to flee.  I wanted to flee the job that I hate so damn much.  I wanted to flee the house I loathe with every fiber in my soul.  I wanted to run as far away as I could from the little town that I’ve spent 2/3 of my life in. 

When I got the girls, their presence soothed me.  Their carefree giggles and fun-nature brought me back out from the depths.  And even though I hate, despise, and loathe those things, I would be lost without the people in them. So thankfully today I don’t want to take my last $60 and run as far as it would take me.  Which really isn’t all that far these days

I know.  I know.  I vanished again.   We are having unseasonably cool weather.  Usually by now it is so hot that we have the swamp cooler on full speed and everyone is laying around in their tanks and shorts.  For some reason, and I like whatever this reason is, it has stayed in the mid- to high-80’s.  I’ve been trying to enjoy it as much as I can before it hits those 90’s and 100’s we usually see.

Also, Kevin was supposed to do a blog post on Matty’s dentist appointment, and well, you see what happened with that.

I hope wherever you are the weather is as fantastic as it is here and you are having a spectacular Father’s Day.  This is the first time that I haven’t woken up on Father’s Day with tears because of how Matty’s “dad” cast him to the side without any hesitation.  (And then tried to sue me for the child support he paid in over the years).  He has Kevin and Kevin has him.  Kevin is the  most amazing kids to all 4 of the kids.  I couldn’t have been blessed with a better man to be my husband and father to our kiddos.

I had to make one of the most heartbreaking decisions yesterday.  I fired our pediatrician.  I still get teary thinking of it.  He is an amazing doctor.  It was the office staff that caused me to fire him.  I believe in a 3 strikes you’re out rule.  I hit the 3rd strike yesterday.

The first big negative thing that happened was when I finally get health insurance for Rachel.  For some reason the insurance company is saying that there is insurance but the office wouldn’t accept it.  It’s been a 3 year struggle over $300 to pull an eraser out of her ear!!  $300 for that!  Insane!

The second thing is that this doctor is in very high demand.  He is absolutely amazing.  So he is slammed.  I tried to schedule their well child checks.  We do them together every summer.  Well, they couldn’t get them in until the middle of September.  September!!  3 months.  That does not work when Matthew needs a shot before he starts school and school starts in the middle of August!

And the 3rd strike…the most heartbreaking…they wouldn’t allow Rachel and Matty to go into the room together because Matty is over 13.  I explained to her that Matt was mentally handicapped.  We always put them in together.  He watches what the doctor does with Rachel so he knows that it is no big deal.  Then he has his turn and it goes very smoothly.  The receptionist would not budge.  She said it was a policy that was passed last year.  Children over 13 have to go in alone. 

I made the September appointments and then I sat and stewed.  The more I thought about it the more pissed off I got.  I conferred with Kevin.  He totally sided with me on it.  I knew then that I wasn’t being overemotional.  I know I can do that at times.  I called our family physician to see about transferring them over.  I was able to get them in on July 7.  And this receptionist actually ASKED ME if I wanted them to go in together!  Score!

Therefore, I’m making the transition to the family doctor earlier than I anticipated.  I do plan on writing a letter to our pediatrician saying good-bye and explaining why we switched over early.  It still makes me sad.  I have a huge history with this man.  He was the one who found the fragile x in our family.  He has been there through it all with the kids.  But it obviously is time for us to move on to different pastures. 

(And our family doctor and the pediatrican grew up together so I know they will happily swap information to help with my kiddos )

…of Matthew!

When we were camping Memorial Weekend:

Grandma:  So Matty do you have a girlfriend?

Matty:   No.

Grandma:   What happened to Anna?

Matty:   Bitch

Grandma:  Enough said

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Matthew talks to himself while he is on the potty.  This was one recent early morning conversation he had with himself.

Matthew:  Hello.  Welcome to Walmart.  Thank you.  Have a great day!  You too.

(I think we go to Walmart way too much )

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My mom had Matty while Lauren was getting her ultrasound.  She took him to my cousins house to play with her boys.  When they were leaving my uncle was standing off the driveway just a bit.

Matty:  Run him over Grandma!

Grandma:   You want us to run over Uncle C?!

Matty:   Yeah.

Grandma:  Why?

Matty:   Cuz he has blonde hair like you do!

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My BFF in the whole wide world (aside from Kevin ) is heading on what is I think her 13th mission trip to one of her favorite countries, Guatemala.  She is probably in the air as I type this.  She will be gone until the 27th. 

I worry about her profusely when she is down there.  It is not a very safe country.  But I know that she is meant to be there or she wouldn’t have came back home so many times in such great shape.  Her ultimate goal is to some day live down there and work in one of the many orphanages.  I know each trip she makes down could be the last because she may not come back.  Those Guatemalan orphans are just too darn cute.  And they would be very very lucky to have her look after them each day.  I also know that if she ever saw one with autism or fragile x or any other cognitive disorder close to those two she would know just how to handle the child.  She would be a blessing in any orphanage down there.

So Theresa, be safe.  And I can’t wait to hear from you when you get back.  If you get back.

I don’t think I mentioned this in my blog yet, but poor Lauren is experiencing what it is like to be a girl.  She had been having some tummy pain for almost two months now.  Nothing seemed to really ease it.  We got her in to our doctor last week and the verdict is: ovarian cysts.

When the doc pressed on her tummy I saw the exact same shock of pain cross her face as it had mine for the past decade.  Today is the ultrasound to see if they can see anything.  I am hoping that we might have caught this early enough on that it won’t be anything like the journey I had to walk. 

Lauren is terrified.  She is still a virgin so this stuff seems to be doubly traumatizing for her.  I have taken the whole afternoon off just so I can give her that added Mommy comfort. 

So if you get a spare moment can you send up a little prayer for her today?  The appointment for the ultrasound is at 1:30 MST.

I’ll update with a comment on this post this evening.

My mom is a saint.  She is raising my younger cousin who is 15.  His bestest friend in the whole wide world had to move so my mom brought him up for the summer.  Travis, the visiting friend, has been dealt a really bad hand and he battles ADHD and other stuff.  Therefore, this teen hasn’t been taught many manners.

Well, Miss Rachel wanted to stay the night with her grandma.  I dropped her off before I headed to work.  At about 2:00 my mother calls me.  She was laughing so hard.  I guess Travis said something that just set Rachel off!!  This is what happened.

Travis:  “You are such a retard, Lou.”

Rachel:  “I do not like that word!!  That is a mean word.  People say that about my brother and it makes me feel bad.  He is not retarded.  And if you don’t like it you can talk to my mother!”

She was one ticked off little firecracker.  I guess Travis had thrown the R word around all morning and she had just had enough of him.  Could you imagine being 16 and being told off by a 10 year old!!  My mom told me later that Travis never said “that word” again the rest of the time that Rachel was there.

My mini-me is now my mini-advocate .

For more information on Ending the R Word go here —> R-word.org .

Posted in Daily News Tagged: advocate, r word, Rachel, retard ]]> http://fragilex.wordpress.com/2009/06/10/my-mini-me-transformed/feed/ 4 FXSmom the_r_word http://fragilex.wordpress.com/2009/06/09/quizzical/ http://fragilex.wordpress.com/2009/06/09/quizzical/#comments Tue, 09 Jun 2009 17:15:04 +0000 FXSmom http://fragilex.wordpress.com/?p=2738 ]]>

Once again I am home sick.  Once again.  Ugg.  Again.  I’ve been up since 4:30 with a rumbly tummy.  I’ve wondered it many times.  How does fragile x affect my health?  And on top of that I have psoriasis, which is a disease of the immune system, which definitely doesn’t help things. It’s frustrating when I have as many responsibilities as I do.

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In happy news, Matty is petting a puppy!!!!  It used to be that Matt would just look and watch the dogs.  Then he would get close and let his hand hover over the pet.  Thirteen years after being exposed to his first pet he is now finally put a little bit of pressure on the dog.  He lays on the dogs too.  His tactile defensiveness is getting better .

I’d add more but I’m exhausted!!! Hopefully tomorrow it’ll be longer…or not…who knows!

Since my Monday has been miserably crappy….I’m going on strike!!

I refuse to post anything fun and interesting until I get comments.  I need more comments!!  I know u guys are lurking.  I know u r out there.  And I miss ur comments.  Please show me the love. 

Then I will leave u alone and write about something fun or interesting.

Kevin and Austin are making a little shed outside for our pellets.  The cat was tearing up the bags and then weather was getting to them.  Kevin drew up all of the plans and then discussed them with me.  Somewhere in the conversation Matthew heard him say, “1/2 an inch.”  It amazes me what these kids find to perseverate on.  All afternoon Matty keeps repeating and pointing outside, “1/2 and inch.”  He has said it so many times, that even when he’s not saying it, I can hear it in my head. 

Other than repeating a dimension he has spent most of the day looking out my bathroom window at the action underneath it.  So I guess I can take the good with the bad.  He may keep repeating “1/2 an inch” but at least he has kept himself entertained all day.

This was meant for yesterday, fragile x friday, but I was so exhausted.  So it’s a day late.  Better to be late than never, right.

Do not continue reading this post if you are afraid of mice.  It could also be bad if you happen to love mice.  And if you don’t like snakes then maybe you should carry on to a later post as well.  But if you are ready for a giggle, a moment of panic, or just to be happy this wasn’t you…please proceed.

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Austin has a milk snake that he named Cow.  We visit our local pet shop at least once every couple of weeks to get a pinky or a furry for it’s meal.  A pinky is a newborn mouse.  A furry is a mouse that is a smidge bigger and has hair.  Most small snakes will need a pinky but as they grow they will need a furry.  We are in the furry stage. 

I actually got the chance to have a day alone with Matthew.  We went shopping in town together and he went with me to the pet store.  I also get crickets for my turtles too.  It’s a 30 minute ride from the pet store to our house.  When I left the pet store the bag looked like this:

When I got home I reached over to help Matty get out of his seat belt and noticed something this mom feared.  The mouse bag was turned over in my purse!!  I have a very large tote bag.  I flipped over the bag praying for a miracle but all I found was this:

I was not happy!  I was actually a little panicked.  I called Kevin at work.  I have no clue why.  What was he going to do?  He was half an hour away and couldn’t leave for at least 3 hours.  I was not going to allow this thing to scurry around in my purse for hours on end.  And, yeah, Kevin wasn’t a lot of help or moral support.  Guys just don’t get it.

I peeked into my purse and didn’t see a flurry of white.  I really didn’t want to dig around in my purse. I decided to just lift my purse slowly and hope for once Matthew didn’t have impeccable aim.  I was granted this miracle:

Little Mr. Furry mouse was by the passenger seat trying to get under it!  Furries can’t see, so they use their sense of smell to get around. Could you imagine if he would have gotten under that seat?  I may have never been able to find him!  However, I did, so Matty was able to live another day.   I got a piece of paper and scooped the mouse back into the bag.  I went straight to Cow and deposited the mouse in his cage.  The little mouse’s adventure was short-lived.

I told the pet store of our little adventure the next time we went in.  They now staple the bag closed

LAUREN!!!

Well summer has officially hit in our household.  That means that each of the kiddos have a new summer routine.  Schedules always cause me a lot of stress.  I hate change.  My kids hate change.  I get anxiety.  They get anxiety.  I fret.  I worry.  I cuss my job.  You name it.

So far this year it’s going really really smooth though.  Rachel will be spending one week at home with me and one week with her dad.  This was her decision.  She is 10 1/2 and it is time for her to start figuring out her visitation routine on her own.  So far it works really well for us.  I drop her off on the way to work on Mondays.  And then I will pick her up after work on the following Monday. 

Matthew will be with an AmeriCorps volunteer for 3 days out of the week.  She worked with him at the after school program which didn’t get summer funding. 

Austin is just kinda chilling this summer.  Next week he will start working on high school soccer practices.  I can’t believe it.  High school sports already!  And he will work off and on for us and his grandparents pulling weeds and other stuff. 

Lauren will be doing her English 2 online courses this summer so she can graduate high school in December.  She will also keep Matty for 2 days of the week.  And at the end of July she will do driving school for two weeks.

So it’s busy but we seem to have it all worked out.  Matty did so well with his new arrangement that I actually got teary eyed.  No they weren’t tears of joy.  I was sad that he didn’t miss me more . 

Hope everyone else’s summer goes smoothly as well!!  What are your plans this year?

Matthew has become quite the little helper.  On a recent Walmart trip he decided he was up for the challenge to put away the groceries.  I brought everything into the house and then went to the back to put some bathroom things away.  When I got back to the kitchen Matty had cleared a spot in front of the cupboard and was putting things away.

As happy as I was that he was willing to help put food away many things weren’t quite where they needed to be.  Quite a few things were actually freezer or refrigerator food items!

He was just so proud of his hard work that I didn’t fix it until he left the room.  Luckily, it wasn’t much longer after this shot and nothing was ruined .

I wanted to start doing Fragile X Friday’s again.  I had thought there was a graphic that another mom created but now I can’t find it. Can anyone help me?  If I’m just imagining it then I’ll create one eventually.

I’m going to borrow another article from the Coutilish/Langan clan.  This column is about therapy dogs.  About 5 years ago I had looked into getting a therapy/social dog for Matthew.  We lived in an apartment and he really needed a “friend.”  The only way we could get a dog was if it was licensed.  But I met my amazing husband, Kevin, who had a pit bull cross that adored Matthew.  Matthew was able to waller all over Sissi and she loved it.  So I passed on getting the social dog for someone who really really needed it.  I think they are an awesome thing for those who need it.  It is amazing what an animal can bring out in any child.

*  *  *

Ted & the mom Nancy wrote this one.  Addy & the dog Jake come to Andrew’s soccer games.  They’re a great team! ~Mary Beth 

COLUMN NAME: X-tra Special Advice

BY: Mary Beth Langan and Theodore G. Coutilish

HEADLINE: Therapy dog inspires son out of silent world

COPY: Bill and Nancy Doetsch of Grosse Pointe Woods got the idea for a therapy dog for their son, Addy, then 5, after talking with a relative who saw one sitting on an airplane seat in 2001.

“Addy had limited language and was not talking much,” said Bill Doetsch, 42. “We had great results with everything we had tried — dietary therapy, vitamin therapy, auditory therapy, speech therapy, occupational therapy — except for language. The next step was a therapy dog for Addy.”

The family applied to Assistance Dogs of America Inc., which helps children and adults with special needs achieve greater independence by training and placing service and therapy dogs with families. The cost was not cheap at $10,000. The cost today is $15,000.

Within three months, they were approved for a 2 1/2 year old Golden Retriever therapy dog named Jake. “We fell in love with him immediately,” Bill Doetsch said.

Nancy Doetsch, 40, and Addy went through the required special training process. Addy learned how to work with Jake, go on walks, feed and provide him with water. The two quickly bonded.

“There is nothing like watching Addy and his boy Jake play or the unconditional love and bond they share,” Nancy Doetsch said. “His speech really took off after we got Jake.”

Within months, Addy began talking to Jake more than to his parents or his brothers, Alex, now 17, and a junior at Grosse Pointe North High School and Andrew, 18, a GPN senior.

“Jake would listen and love him back,” Bill Doetsch said. “Addy became more social. People would come right up to him to talk about the dog and he would answer their questions. Before he knew it, his social and language skills were developing unexpectedly.”

As time passed, Addy and Jake became inseparable. Addy grew out of his shell and started interacting more with his peers.

These days, Addy, 13, plays Neighborhood Club basketball and Red Barons football, and has age-appropriate friends while finishing up the sixth grade at Brownell Middle School, Grosse Pointe Farms. Plans are to continue attending Brownell next fall as a seventh-grader.

Addy Doetsch has been diagnosed with Aspergers syndome (AS), an autism spectrum disorder. According to Wikipedia, people with AS show significant difficulties in social interaction and restricted, stereotyped patterns of behavior and interests.

None of this matters to Jake, of course, and his BFF.

“He’s a really nice dog and he’s good to me,” Addy said. “He always plays with me and I love him.”

Sometimes, hanging around the doghouse can be a good thing.

For more information about Assistance Dogs of America Inc., visit adai.org.

Grosse Pointe residents Theodore G. Coutilish and Mary Beth Langan created this column to share experiences from their journey as parents of a child with Fragile X Syndrome [fragilex.org]. Send your questions or comments to mblangan@hotmail.com.

Matthew and his class had a field trip on the 19^th to Golden Corral and our local nature center.  I’m not used to life with lunch at work.  Therefore, at first I didn’t think anything of the field trip.  However, I realized that I have to eat too and I actually am free to eat away from my desk!

I emailed his teacher and asked her about what time she thought they would arrive at Golden Corral.  She said that they planned to get there right when it opened.  This is one of the reasons I love her.  She is a smart woman. 

I got with my supervisor and our schedules coordinated so I could go.  Then even more miraculous was that Kevin was able to make it too!  Before I barged into Matty’s land, I asked him if it was okay and he even said, “Yes.”

Golden Corral was so yummy!  I hadn’t been there in quite a while.  I tried to pay for Kevin, Matt & I but the teacher had already paid for Matthew.  Therefore, I just paid for Kevin and me.  Matthews’s good friend, Michael, decided to join us at a table.  He is such a funny kid.  After we had left the restaurant I told my husband that in that family if you don’t want a story told, then don’t let Michael hear it  . 

I was gone for an hour and a half eating lunch with that class.  I was glad no one at work said anything about going over my time.  Part of why it had taken so long was because the teacher wound up paying for Kevin and me!  Kevin told her that we had it covered but she made us be reimbursed…after she paid for us.  I’m thinking of a way now to give that $20 back to the class without “offending” the teacher.  Maybe some kind of year-end treats for the kids or something would be nice.

*I don’t know the source of these, so if you know, please let me know, so I can give due credit!! Thanks

Prior Tips:

#1: Nursing

#2: Clearing Nose

I have a handful of posts I’m working…

• Continuation of the Wordless Wednesday Parenting Tips
• Cast for Kids Update
• Memorial Weekend Camping Trip Update
• Conversations from Memorial Weekend
• School Year End Update
• Lauren is getting wings
• Summer Plans
• Rachel and the new counselor/meds
• Matty Summer dentist appointment ~ will he ever like the dentist??
• And much more

more animals

I iz 32 2day!

Last Saturday was our annual Cast for Kids even.  Cast for Kids is AMAZING!!  Seriously, if you have a special needs child, check out the website and see if an event is going on in your area.  It is so much fun and the kids love it. And it’s FREE!!  So what are you waiting for?  Go check out http://www.castforkids.org/.

For the first time ever we took a sibling on the boat with us.  So this year it was me, my dad, Matthew & Lauren.  We had a great time.  Matty was so funny.  And a smidge annoying.  If we heard him say, “Where is him, Grandpa?” one more time he could have been left on shore . The fishing kinda sucked because the lake had rose a foot a day from snow run off.  But that didn’t matter much. 

We only caught 2 fish.  The first one we caught Matty was pretty stoked about.  But the second it got in the boat he was yelling for us to toss it over the other side.  His grandfather’s taught him well about catch and release.  The second fish that was caught had him scrambling to the back of the boat.  Silly boy.

After fishing we had a BBQ and the kids were given goody bags and awards.  Matthew doesn’t care about much of that.  Just the food  .  The state police came with their command center, cars, chopper and boat for the kids to check out.  And Cold Stone Creamery gave free ice cream!  It was very yummy.

We can’t wait until next year.  And Lauren and I are hoping that she doesn’t have a sprained ankle so we can volunteer more

*I don’t know the source of these, so if you know, please let me know, so I can give due credit!! Thanks

Prior Tips:

#1 – Nursing

“Beth, this is Mr. Hill.”

Not a message to hear after spending two hours in a dentist chair.  Nevertheless, that was what welcomed me last Thursday afternoon.  Lauren’s principal, and my old friend, was calling me in a panic.  I knew when he called me by my first name it had to be serious.

The rest of the message went something like this, “Lauren fell down some stairs and hurt herself real bad.  I’m going to call Kevin to see if he will authorize to transport.”

Everything after that was kind of foggy.  I just vaguely remember the next message being from Kevin,“Hey hun when you get this call me.”

I pulled into the first empty parking lot I saw and called Kevin.  Lauren did in fact fall down some stairs.  Kevin told me to go back to work and it’d be okay, but okay or not I wasn’t going back to work.  When I got into the ER room I panicked at first because her right arm was covered in blood.  But thankfully it was from the IV they put in and not from the fall. 

She had bit the insides of her lips but nothing serious enough to warrant stitches.  They wheeled in an x-ray machine and examined her left leg.  She said when she fell she heard loud snaps and cracks.  We waited about an hour to get the results and thankfully nothing was broke.  She had sprained her ankle pretty bad.  The snaps and cracks were the ligaments breaking. 

She was put in an air cast, put on crutches and sent home.  The next day she went back to school even though Kevin and I told her she could take the day off.  Almost a week later she is doing pretty good.  She wore a shoe on it today.

I don’t ever want another call like that one again!!! 

And this is the 3rd time in 3 years that she has sprained that exact same ankle.  Twice on the exact same day!!  Next year on May 14 we are locking her in a padded room

*I don’t know the source of these, so if you know, please let me know, so I can give due credit!! Thanks

I totally love special interest stories.  This one made me chuckle because it reminded me a lot of Rachel and how I kind of envision her in high school.  It is about a high school girl who has 3 brothers with fragile x syndrome and how she accepts who she is.

*   *   *  

I am so excited about my mother’s day present.  A long, long time ago I saw a beautiful necklace that was a teal ribbon with angel wings.  The teal ribbon is the awareness ribbon for Fragile X Syndrome.  I downloaded the picture and tweaked it a little making it into what I wanted my first tattoo to be.  Kevin and the kids decided it was about time that I got my dream.  And here it is:

I am soooo in love with it!!!   I’ve been on cloud nine ever since I got it.  It is for my graduation, birthday, and mother’s day.  The timing was perfect.  Most tattoo parlors don’t even carry the color teal.  But they did.  And the artist had a cancellation so he was able to get me in right then.  Thirty minutes later and I have a symbol that represents my babies.  I love it in a happy teary way. 

And now that I got it I can start working on the one I want to represent Kevin .  I’m thinking something with a navy blue carnation like we had at our wedding <3 . 

*Remember that we use faux names here so obviously the initials don’t make sense….lol.

Happy Mother’s Day to everyone who has been a mother to anything in their life   Last year I found some cut pics from icanhascheezburger.  This year I went there and to ihasahotdog to find some cute stuff.  I chose some adorable ones involving babies.  Click each thumbnail if you need to see it bigger.

Enjoy your Mother’s Day!!

If you hadn’t heard already….I’m done with college!!!  So now I’m attempting to regain, and enjoy, my mommy/wife duties.  One of those things is cooking dinner.  In all honesty, I HATE fast food.  Yeah, it’s easy and all but it tears up my stomach and it is just not healthy for us.  And I also HATE cooking.  I think a big part of it comes from when I was a kid and cooking dinner and doing dishes were punishments.  It took the joy right out of it and now I snarl when dinner time comes.  And it is hard not to strangle the kids when they ask me what is for dinner.  It’s worse to hear that question than to hear, “Are we there yet?”

So, I’m sitting here trying to make a menu for the next month so I can make my grocery list of off it.  Sound simple but I’m dying here.  I don’t want to repeat things if at all possible.  I realized that there isn’t a whole lot of stuff that I know how to make.  Or I can remember that I know how to make.  I tried to get Lauren to help but she only thought of a couple of things.  That leaves 26 more days.  I asked Matty but all he kept saying over and over was Sonic.  The boy has been brainwashed…lol.  I went through and put stuff down that I can remember that the kids like.  So I now just have 1 week left to figure out.  There has to be 7 menu ideas that are easy to do and that my kids like.  I texted my hubby to call me when he gets a moment.  He has been the chef the last few years.  He HAS to have seven ideas.  I hope

I called Rachel.  She is with her dad this weekend.  She came up with three more ideas I didn’t have.  Four days left to fill out.  Hmmmm.  I mentally going down the aisles at the store.  Maybe if I go raid the deep freezer I can come up with something.  Ewww….there is a turkey out there.  Turkey in May….lol.  Oh and we are camping four of those days.  I’m done!!

copied with permission from Grosse Pointe News on 5/7/09

COLUMN NAME: X-tra Special Advice

BY: Mary Beth Langan and Theodore G. Coutilish

HEADLINE: Learning from this extraordinary teacher

COPY: Call him Mr. X.

He is the best teacher Ted has ever known.

Not for his patience. He has very little. Ditto for compassion, confidence, ability to explain a topic in a different way, openness to new ideas, creativity, dedication to excellence, sensitivity, respectfulness, caring, creativity, unwavering support, willingness to help a student achieve, pride in a student’s accomplishments and passion for education. He would not win awards for his teaching style.

He does not speak. He does not listen well. He does not treat everyone fairly. He is not usually calm. He does not like learning. He usually does not try to engage his students. He does not even teach, at least not in the traditional sense.

But a finer teacher there has never been.

Who is Mr. X?

Mr. X is Andrew Langan Coutilish, our eight-year-old son affected by Fragile X Syndrome and autism.

While many people focus on the negatives, his disabilities and what he cannot do, think about him — and others like him — in another way.

Think of his abilities.

Think of his ability to instill patience. His theatrics bring out patience I never knew I had and never thought possible. It has changed how I look at everything — work, relationships, education, love.

Think of his ability to inspire new ideas. I have to do research to fix his computer follies and I could write textbooks on creative ways to fix things he breaks around the house and in the minivan.

Think of his ability to bring out humor. Sometimes the unique things he does are ridiculous. His take on life and how to navigate can be interesting to watch. Sometimes you laugh. Sometimes you cry. But you always learn something and are better for it. 

Think of his ability to stir creativity. Teaching him teaches you to think in innovative ways. It challenges logical thinking, emotions and behavior. As run-of-the-mill teaching styles fail, it forces you to create out-of-the-box techniques. It forces you to adapt, be flexible and open to new ideas.

Now think of those people in your life who are like Andrew. Those with whom you have not connected, may try to ignore and do not understand. Think of what you are missing — those missed opportunities to make a better you through interactions with them.

Think of what you can become.

Embrace someone with special needs. If not for them, do it for yourself. Nurture them. Connect with them. Teach them. Learn even more from them. Take the opportunity. It’s the right thing to do. You will gain more than you ever imagined.

Grosse Pointe residents Theodore G. Coutilish and Mary Beth Langan created this column to share experiences from their journey as parents of a child with Fragile X Syndrome [fragilex.org]. Send your questions or comments to mblangan@hotmail.com.

###

Wow!  So much has happened over the last 3 weeks.  Everyone has had a little bit of a change in their lives.

Kevin

I gotta say my hubby has done of the hardest things in the world…started to let his little girl go.  I don’t think it helped with him quitting smoking at all but I think in time it will really help Lauren to be more independent and responsible, which is what we all want for our kiddos. 

Rachel

Little Miss won her first soccer game. And her second. And her third!!  Her coach came up to me after her last game and said, “If you ever want to get rid of that girl I think any of my daughters or us coaches would take her.  She’s a sweetheart and one heck of a soccer player.”  My heart soared.  She has tried so hard to be good at soccer.  Even my dad noticed at that game how much her gross motor skills have improved and her flapping has decreased.  And it make me smile that he actually said, “gross motor skills.”  LOL

Lauren

Well, our oldest baby, is almost an adult.  She found out that she can graduate high school in December and start college in January.  That is like….months away!!  I’m so proud of her for being able to do this, wanting it, and pursuing it.  But at the same time….one of my babies is already sprouting her wings.  When did that happen!?

Austin

Austin is just navigated the world of girls.  I decided that middle school girls are what give us all a bad name   He went through a terrible depression over a situation with one girl.  We still don’t know the details but we kept him from school and he went to work with Kevin.  It was pretty scary for a few days.  Once he realized what was bugging him he finally took my advice and wrote it out.  He did it in a letter to the girl.  He was pretty surprised that it can actually help.  He came out of it pretty well and he has been great ever since. 

Matthew

My baby boy turned 13 on Sunday, May 3!!  Thirteen!!  ACK!!  I can’t believe it.  We had a great party for him.  I didn’t do the family thing.  I did the classmate party.  We had a fiesta.  He had so much fun.  Kevin and I were worried that he wouldn’t be able to handle his home life and his school life colliding but he did good. 

Moi

I finished up my last year of college.  Five years ago my ex left me for another woman.  Most would be devastated but I was stoked.  I could live the life I had wanted to for years.  One of the first things I did was enroll in college.  I double majored for a while but when I went from 2 kids to 4 I paired it down to the degree I was closest to getting.  So five years later I will be blessed with an A.A.S.A.O.A.P. which means Associate in Applied Science Administrative Office Assistant Program.  Yep, I got a degree as a secretary….lol. 

I hoped that it would give me a raise but I don’t think that will happen.  I plan to give my job til the end of the year.  Then I would like to find something closer to home.  I spend an hour a day just commuting. 

Anyway that is us up to now.

Today I vow that I will create at least a 2 paragraph blog post…or at least 2 picture…every day for the next month.  If I don’t, um, i don’t know, any ideas of a good torture.  I’m sketching ideas and gathering pics as we speak and I will post my first one this evening!!

BTW….

It was worth the break…1 A & 2 B’s

I’m sorta kinda back. I decided expect to be sicker than a dog on the day I planned to be back. But I have a few posts brewing in the back of my mind that I’m working on. Can’t wait to catch you all up )

I don’t have any choice but to step away from blogging for a few weeks. There is a clickable timer below if you are curious about when I shall return (lil less than 3 weeks).  I would put the real thing but wordpress.com doesn’t allow it.  That’s about the only thing I don’t like about wordpress.com.

Anyway, I have a lot of stuff weighing me down with work, classes, soccer and every day life for the next few weeks that I HAVE to focus exclusively on or I’m going to go nuts.

But I will return because I LOVE this blog, blogging and my visitors

click me:  I will be back

For your Easter enjoyment…Here is your rappin Easter Card:

Happy Easter 

(click above words)

Matt:  Burro, burro, BURRO, burro.

Mom:  Ya know what, Mat. It doesn’t matter how many times you say “burro,” you still aren’t going to be Mexican son.

Matt:  Burrito, burrito, BURRITO!!

I love the conversations we have at Rachel’s soccer practices.

A lot of you have seen this already on facebook and the fragile x community.  But I know not all of you have. 

Friday afternoon I got a great email from Matt’s teacher.  He totally clicked all day!

Hi!
Matthew had a terrific day at school!! He played a game called “I Spy”, and as we played the more he attended to the game. It was an awesome moment. Next he was more independent in the cafeteria during breakfast/lunch. He carried his tray, ate, and then threw it in the trash!! During school store he helped Melissa choose some pens that she wanted to purchase (waited on a customer)!! Then he helped count items that did not sell (inventory)!! He really was so proud of these accomplishments!!
Have a great weekend!!

Isn’t that like totally awesome!!!

I found this news article this morning and would love to hear what you think

*  *  *  *  *

Sperm Banks Can Be Sued Under Product Liability Laws, Federal Judge Rules

In his 23-page opinion in Donovan v. Idant Laboratories, Senior U.S. District Judge Thomas N. O’Neill Jr. cleared the way for a 13-year-old mentally retarded girl from Pennsylvania to sue a New York sperm bank under the theory that the sperm used to conceive her had a defect known as “Fragile X,” a mutation known to cause a syndrome of maladies that include mental retardation and behavioral disorders.

“Under New York law, the sale of sperm is considered a product and is subject to strict liability,” O’Neill wrote.

The ruling is a victory for plaintiffs attorney Daniel L. Thistle and clears the way for Brittany Donovan of Philadelphia to pursue both tort and contract claims against the New York sperm bank that sold sperm to her mother in 1995.

But O’Neill dismissed all claims brought by her mother, Donna Donovan, after finding that the statute of limitations had long expired because genetic tests showed in 1998 that the sperm donor was the source of the Fragile X genetic defect in her daughter.

Brittany Donovan’s claims, however, are still viable, O’Neill found, because the Pennsylvania Minors Tolling Statute provides that the clock does not begin to run until two years after the minor reaches the age of 18.

According to the suit, Donna Donovan began research in 1994 to find a sperm bank and was promised by Idant Laboratories that its donors go through a rigorous screening process to ensure that they have a good genetic background and that it employed a screening program that far exceeds mandated standards.

Idant shipped semen from Donor G738 to Donovan’s physician in April 1995, and she gave birth to Brittany in January 1996.

The suit says Donna Donovan soon noticed abnormalities in her daughter’s development and that she was diagnosed as a Fragile X carrier in December 1997. Further genetic testing showed that Donna Donovan was not a Fragile X carrier and that Donor G738 was a carrier.

But Donna Donovan claims that doctors at Idant continued to assure her that Brittany’s developmental problems were not related to Fragile X and couldn’t possibly be the result of the sperm that was purchased through Idant.

Plaintiffs attorney Thistle argued in court papers that it was not until 2008, when Donovan saw a report in The American Journal of Medical Genetics, that she knew her daughter’s problems were related to the sperm donor’s genetic defect.

But Idant’s lawyer, M. Douglas Eisler of Wilson Elser Moskowitz Edelman & Dicker, successfully argued that Donna Donovan had waited too long to sue.

Thistle urged the judge to apply the discovery rule and to toll the statute of limitations because of the fraudulent concealment by Idant. But O’Neill found that Donovan should never have relied on Idant’s doctors.

“Common sense would cause a reasonable person to question statements in the letters from Idant’s doctors regarding its liability especially in light of the facts that Brittany had been diagnosed by an independent hospital and that an independent laboratory had found a genetic link between the donor genes and Brittany’s Fragile X carrier status,” O’Neill wrote.

The fact that Idant’s doctors proposed alternative explanations for Brittany’s problems cannot be considered fraudulent concealment, O’Neill found.

“To hold otherwise would be to permit tolling for fraudulent concealment every time a defendant offered a different explanation of events which caused it to believe that it was not at fault. That is an untenable extension of the fraudulent concealment doctrine,” O’Neill wrote.

But Thistle won the much more significant legal battle over which state’s laws should apply — Pennsylvania’s or New York’s.

For a case involving sperm, the differences between Pennsylvania and New York tort law are significant. Both states have enacted so-called “blood shield statutes” that prohibit products liability suits stemming from blood or blood products.

But while Pennsylvania’s blood shield statute includes human tissues other than blood, New York’s statute includes only blood and its derivatives.

O’Neill found that there was a “true conflict” between the laws of the two states because “semen is not a blood derivative,” and Brittany Donovan would therefore have a valid cause of action under New York law, but not under Pennsylvania law.

Thistle argued that New York law should apply because New York’s interest in regulating its corporations outweighed Pennsylvania’s interest in providing redress for wrongs committed against one of its citizens.

Eisler argued that Pennsylvania law should apply because the semen was sold to be used by Donna Donovan in Pennsylvania and the injury she alleges took place in Pennsylvania.

O’Neill sided with Thistle, saying that since most of the significant conduct took place in New York — including the screening of the sperm donor and the formation of the contract — New York had a stronger interest in seeing its laws applied.

“New York has a strong policy incentive to regulate the sperm banks in its state,” O’Neill wrote.

O’Neill found that Brittany Donovan may have valid contract claims for breach of implied and express warranties, but that Thistle must first cure a defect on the issue of standing by showing in an amended complaint that she is an “intended third-party beneficiary” of the contract between her mother and Idant.

Turning to the strict liability claim, O’Neill rejected the defense argument that New York would not allow a claim premised on allegedly defective sperm.

Although other states’ blood shield laws and Section 19 of the Restatement (Third) of Torts all say that human tissue and organs are included in the list of products that are exempted from strict liability law, O’Neill found that “the relevant New York statute does not and no case law has extended the statute to also exempt human tissues like sperm.”

I boo-boo’ed.  I knew better but I still had to try.  Matty loves his routine.  He loves his comfort things.   And he loves his table and chair.  Well, the table has a hole in the plastic.  It’s driving me nuts.  So I thought that maybe I would just take some contact paper and recover the top of his table.  That way he still has his table and the hole is covered.  I was quite proud of it.

Matthew wasn’t so impressed.

Matthew:  My table, Mom!

Me:  What about it Matt?

Matthew:  Look table.

Me:  Yeah I redid the top.  Do you like it?

Matthew:  No!

Me:  You really don’t like it?

Matthew:  No!

Me:  I bet you will get used to it.

Matthew:  Huh uh.  No.  Nope.  Yuck!!

Me:  Well, if you really don’t like it then take it off son.

And he did!!  He ripped that contact paper right off of that table.  Walked it all the way to the kitchen trash and tossed it.  He was not impressed with it. 

 Then he was irritated by the hole and decided he just needs a new table.  Birthday present!! (if I can find one his size)

Today is an awareness day that comes from a new movement to stop saying the “R” word.  What is the “R” word, you ask??  The “R” word is any and all forms of the word retarded that is used in an offensive manner.  This is one of those words that started out with good intentions to explain a scientific diagnosis but as time has gone on it has become much more than that.  Many say it without thinking.  I’m guilty of it too.  It is possible in this past week I may have said it once a day.  But I’m trying hard to be more aware. 

How it started

The campaign was “created by young people with and without intellectual disabilities, Spread the Word to End the Word is one element of Special Olympics’ vision of a world where everyone matters, where everyone is accepted and, most importantly, where everyone is valued. Leading the way in promoting acceptance of people with intellectual disabilities, Special Olympics opposes prejudice and discrimination, continuously working to dispel the negative stereotypes associated with this population — the use of the R-word being one such stereotype. In a world that has worked to eliminate pejorative racial and ethnic language such as the “N word,” among others, the R-word is gaining popularity.”

What can you do?

• Take the pledge
• Check out this video
• Read this excellent article from a special needs parent:

Some words hurt more than others

Sally Nantais, Published November 6, 2005, The News-Herald

What’s the hardest part about being the parent of a child who is different?

It’s the continuous struggle to teach people to look past the differences and to recognize the child as a child first and foremost.

That’s not an easy task considering the attachment society has with assigning labels to people and places. 

My son, who has fragile X syndrome and autism, has been referred to using many labels; autistic, handicapped and mentally retarded to name just a few. The more I hear these references the more I hate them.  

Why?  Because they focus on what is different. Those who use them forget he is only a child who has feelings and emotions. They choose not to realize this is a child who understands more than what others believe he can comprehend.

He is not autistic; he is a child who has autism. He is not handicapped; he is a child who has different abilities. He is not mentally retarded; he is a child who learns differently and slower than others do.

For me, the worst and most degrading of the three labels is “mentally retarded” because of the slang word “retard” that is often associated with it.

Take a walk in my shoes. How would you feel?

A mom told me her child looked “retarded” in his school picture. I kindly asked if she meant he looked like my son.

Although, the word has  been banned in my daughters’ school, I still hear children call each other “retard” in the halls.

At the beach one day, a child asked his friend, in a very negative tone, “Is he retarded or something?”

On many occasions, I’ve heard adults, who should know better, say something to the effect as “What are you retarded?” 

I became agitated driving one day when members of a local charity organization were out collecting donations and their vests read “Help Retarded Children”. As far as I was concerned, they might as well read “Help Retards.”

At yet another outing with my daughters, we were subjected to the sound of one child again calling another child “retard” as a means of insult. 

“Retard”, and any form of the word, in my family is known as the “R” word. For me, it’s as derogatory as any racial or ethnic slur, all of which will never be spoken in our house. They are forever banned. 

In our community, if I had one wish, it would be that the word “retard” and all its deviations be banned. 

Children will grow up to exhibit the lessons taught to them by their parents. So teach your children well and please don’t focus on the diagnosis or what is different about someone.

Focus on the unique individual behind the diagnosis.

If you’d like to learn about, “People First Language: Communicating with and about People with Disabilities” visit www.bridges4kids.org/articles/8-03/NYDOH.html. 

Some may think I’m overly sensitive but when I hear or see the “R” word it not only hurts me, it hurts my children too.

In the end, I can only hope that Austin will never ask with a tearful eye, “Mom, am I a retard?”

That would break my heart, and if you walked in my shoes, I think it would break yours as well.

One of the biggest things that is harped upon with special needs kids is early intervention.  The sooner that they get the tools to learn to walk, talk and play the better.  But we are needing tween intervention.  Matthew is still mentally in that early intervention stage where we are giving him the tools to do things like hold a pencil, make eye contact, read signs, etc.  Rachel on the other hand is right there on the border of being “normal.”  One of the biggest issues we have as parents is treating her like she is normal.  But I’m slowly learning that it’s not working and causing much much more frustration on both of our parts.

One example of this is milk in her cereal.  She goes a little crazy with the ol’ milk.  Kevin talked to me last night about it.  He had spoke with her about it.  Austin had spoke to her about it.  And I have spoke to her about it but she was still flooding the cereal.  Well, some kids don’t get it by hearing the words.  Rachel is appearing to be one of those kids.  She needs shown.  She needs tools.  So this morning I found her her own measuring cup.  We measured out 2/3 cup of milk.  Then she poured it in her cereal and it was the perfect amount for her. 

Another tool I need to work on for her is checklists.  She has to see it or she can’t remember.  I am much the same way.  She has actually asked me for a checklist and I told her that she could make one.  But, well, um, yeah.  If she can’t remember to make her school lunch what makes me think she will remember to make a checklist.  Doh!  So I need to type some up with her assistance and have them saved for her.  I can run off a bunch and she will have them for each day.  I have little boxes that she can store them in so I can cater the checklist size to the box. 

She just needs tools.  I just need to remember to watch for when she needs tools.  And try to understand.

I posted a few weeks back about how I was contemplating having Rachel put on an anxiety medication.  Well, I still plan to pursue that but I am trying another method to help her out. 

She is so much like me when I was a kid.  It breaks my heart in one way and it makes me grateful in another.  I’m glad I can empathize with how she feels.  I just have to tap into my childhood self and remember how I wished people would have handled the things I was dealing with.

So I gave her a notebook that we will pass back and forth between us.  It’s kind of like how teachers and parents do when the child can’t talk or won’t.  I do have an appointment Monday morning with her pediatrician about the anxiety meds and seeking out a different counselor.

I bet you didn’t know that there was a band named after Fragile X Syndrome?!  I didn’t either.  Check out this link and learn all about them and what inspired them.

Denver Original Music Examiner: A look back at Fragile X

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I posted a couple of weeks ago about Rachel’s tutor sending a message home that rocked me.  If you need to recap it is at this post: Give up?

Part of the tutoring program that she was involved in had a pre-test and a post-test to see if the tutoring worked and if the child progressed.  The tutor does not administer the test.  Her supervisor does.  So I got a call on Monday from the supervisor asking if she could come to the house and do it. 

Tuesday evening she came over with an assistant.  Kay is the supervisor and Gail is the assistant.  Gail got Rachel started on the test and Gail asked if she could talk to Kevin and I.  The first thing that Kay asked is how we felt about the tutoring.  I was resigned about the whole issue so I simply told her it was okay.  She then asked if we felt that it helped Rachel.  I started out with a “Weeellll” and Kevin finished with, “No.” 

Kay looked over at Gail and said, “What was I telling you?”  After that it all spilled out.  And she sympathized with us completely.  She was not happy with the tutor either.  She had asked for her to be replace over Christmas Break but her boss would not allow it.  He kept saying to give the tutor a chance.  Kay feels awful and offered to give her free tutoring over the summer.  We don’t believe in summer school so we passed but maybe we will do it next school year for math.  We will see. 

When Gail finished her testing she was sad that she didn’t have more time to spend with Rachel.  She said that she could see so much potential in her and wishes she could teach her so much more.  They both definitely learned a lesson to push a little harder for what they believe.  It is not a total loss since a lesson was learned.