Happy 4th…but not for some

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

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.

Don’t Upset His Routine!

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 .

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