The lovely store fiasco…

Thursday night just was not my night to decide to go to Walmart and get our household stuff.  I had to take Matthew with me because I went after work.  I usually go early Saturday morning but Kevin and I both had family coming from out of state so I wasn’t sure when I was going to be able to go.  And we were out of so much stuff.

Well, I only got through half of what was on my list because our cart was full.  Okay, fine then.  I would come back the next available time that I had.  Matty wasn’t real impressed with that idea.  I mean, come on, we passed up the waffle aisle!  But he dealt with it.

Check out went smoothly, or so I thought.  It was leaving that was not so smooth because of check out.  I had bought two bags of dog food and a bag of cat food.  I had them laying on the bottom of the cart.  I had peeled off the sticker with the bar code from the dog food and told her to run it twice.  Well, she didn’t.  Because I had stuff on that bottom shelf the Walmart greeter checked my receipt.  She saw that there was only one bag of dog food…and she told me she had to call security.  Impressed, I was not!!

Matty is already upset that we were stopped by now we had been pulled aside.  So he was pacing around the cart. 

I was fighting with this old hag about the dog food.  She asked me what checkout I had used.  I’m not sure why she asked because after I told her she just said that she would just have to call security.  She was treating me like I was trying to steal the dog food.  I told her that I had no problem taking the food off of my cart. 

Matty was now pacing, humming, and biting his hand. 

She was like, “Well, I guess that would be ok.  But you need to put it away yourself.”

Of course, my response, “Are you serious?!”  At this point I wanted her to call security.  But Matthew has stopped pacing.

She told me then that she was not allowed to leave her post but there was a cart sitting by a cashier that I could put the dog food.

I did it as fast as I could because by then there was a very unpleasant scent in the air.  He had gotten so upset he had an accident.

The second we were out of Walmart, Matty started in with, “What the heck!? She stole dog food, Mom! What the heck!”

I got him home, showered and changed.  By then he was pretty well over it.  But never in my life has anyone or anything upset Matty so much he had an accident in public.  Never.  I’m not happy at all.  And of course, I didn’t get the greeters name.  But next time, if there is a next time, I will have a name, a manager, and security.

Fragile X Friday ~ It Seems So Easy!?

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

Another Blip in the Parenting Road

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.

1:1 Time With Rachel

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.

Handouts for Special Needs Parents, etc

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

Another Cyst

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

Tools

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.