August

It is the month that follows July and precedes September. It is the month where families try to squeeze in one or two more vacations before school starts. It is the month where the weather can range from hot and humid to cool and cloudy...usually in the same day...resulting in packing a diaper bag with an article of clothing for any weather combination. It is the month that my wonderful husband was born a mere 39 years ago! It is the month where you really can tell autumn (our favorite time of year) is on it's way, as darkness comes earlier at night and stays longer into the wee hours of the morning. (Well, at least it's still dark at 5am when our darling cherubs decide it's time to get up!) It also seems to be the month we missed out on this year!

I know that we had an August as we had an awesome vacation in the beginning of the month!! However, from around the 6th through...well...now....we've kind of lost track of time. So, here are the many reasons why we missed out on all that August brings, all the while remaining thankful for the many blessings we gathered along the way.



1. My youngest sister Nicole moved in with us the night we came back from our vacation, (the 6th) and is still residing in our lovely home. Along with her, our two nieces Arianna who is 5 (going on 12), and Lilly who is 3 yrs. old. It hasn't been easy to be honest...for any of us. But under the circumstances it has been the best solution out of the few she had. We don't know when they will be able to move out to begin the difficult journey of starting over, but for all of our sakes we pray it is soon. It has made everything topsy turvy...especially when dealing with the MANY issues that Ethan has dealing with Asperger and SI. My sanity is pretty much gone...and if anyone asks me how I am doing...I can't even lie and say the usual response of "I'm doing fine thank you!" (WARNING: if you do ask me that question be prepared...I may fall apart on you! :) I have become extremely sensitive to constant noise, and motion and find myself wanting to be cloned into about 3 more of any human other than me, in order to deal with the demand of taking care my three chitlins and my nieces. (FYI: 4 of them are in diapers!!)

2. My lovely yet "old" husband severely wrenched his back while putting our 22 pound 2 year old in his car seat after church. It wasn't pretty...and needless to say rendered him useless...er...in a whole lot of pain and unable to move...(love ya!) for not only that day but the next several. He now has PT twice a week to help realign his spine and try to fix the problem.

3.My grandmother passed away on Friday the 17th after battling many health issues. The worst of those being dementia. It was so sad to this women who had taught and touched so many of her grand children's lives, not able to remember who we were or why she couldn't go home. As sad as it is to lose her, we know that she is now free of those earthly chains that tied back all of her memories, and is in a better place with our heavenly father. We thank you all for the many prayers we asked of you as we struggled through these last few months with her.

4.Later that same day (the 17th) we received an update on Sherry's ongoing headaches and dizzy spells. I went to her appointment with her so she could receive the results of her MRI. The news was the worst...she had a brain tumor and we needed to bring her, immediately, to Mass General in Boston. She needed to be admitted ASAP so she could have surgery to remove it. Stunned, but already in crisis mode, Sherry and I prepared everything, (packing bags, child care, directions, food, husbands, etc.) and made our way down to Massachusetts for the unknown. Long story short, she had the surgery on Monday the 20th and they determined it was benign. She had an almond-sized nodule removed from her cerebellum. Surrounding this nodule was an orange sized fluid filled cyst that had to be drained. All of that was causing pressure (as you can imagine) resulting in the headaches and dizziness, etc. and had she not had it removed, it could have shifted or continued to grow and cause permanent damage. It was the scariest weekend of our lives. It was the worst phone call to my parents I've ever had to make. It was the best show of kindness, love, caring, giving, sharing, offering...I've ever been so blessed to be a part of. To all of our family and friends who helped us out in a very scary time of need...words can never express how thankful and blessed we truly are to have all of you in our lives.

5. My grandmother's funeral was on Wednesday the 22nd. Because my grandmother lived in Maine but was to be buried next to her husband in Massachusetts, the arrangements were a little different than usual. We had a short viewing time, followed by a small Catholic ceremony. We weren't able to see her buried though because of inter-state paperwork that still needed to be done. However, I brought Sherry down that Saturday as they do a mass for all of the deceased that were buried that week. So, we were able to attend her graveside afterwards and read some scripture verses from my grandmother's bible and just be there with her. It was wonderful for me to have the quiet time there with Sherry and Rebekah (my sidekick), but it was even better for Sherry since she was unable to attend the funeral.

6. This past week, Rebekah broke one of Ethan's records...albeit a fever record...but a record none the less. She's had a fever since Monday morning...thank you Dan for noticing that she was a little "warmer" than should be normal! Other than the fever though, she didn't have another symptom...so we chalked it up to either teething or the cold her cousin Jack had just had. Well she spiked a fever of 104.9 F yesterday afternoon! (Ethan had been 104.7 F and unlike Rebekah who was beside herself in discomfort and tears had been running around and playing with said temperature!) According to the docs. it's all from a very red, pus filled sore throat...yikes...very scary. Yes, I said doctors...one adult...five children...small room...one needing a bathroom...one needing to nurse...one having a tantrum...one banging on the chair...one pushing the stroller around the room...and one crying...(okay that last one was me) but you get the picture...not pretty.

So, where are the blessings you say?? Well, despite the unbelievable amount of %&#$ we had unloaded on us...God has been very good!


Sherry is on the mend...though slow...I mean come on it IS brain surgery folks!! :) I affectionately refer to her as "Head Wound Harry" and we constantly find ourselves referring to "it's not a tumor", and "it's all in her head" jokes all the time. She is still with us, and we pray that soon she will be rid of the headaches and dizzy spells that have plagued her for the past several months. God is truly good.

The entire family, on my mom's side, were actually in one spot together after not seeing each other for more than a decade. It was nice to catch up with everyone and share pictures and stories.

We have had this opportunity to be a light in the lives of our nieces. Although at times it is hard to remember, we have to keep in mind that this truly is just a season in our lives. We hope and pray that the time they've spent here will be a guiding force to lead them on the difficult journey they still have ahead of them. I don't envy where my sister is right now...nor do I pretend to understand it. I can only give what I've got to give and pray that it is enough.

So, now here we are...it's September. We've so many other things happen to us like...Rebekah is sitting up now on her own and weighs 15 lbs. 5 ounces...Ethan has actually grown a half inch and is finally stable at the 30 lb. mark...Joshua is only 7 lbs heavier than his sister at 22 lbs., but he grew 3/4 of an inch. They are happy, and as of today since her fever broke, healthy, growing children and for that we are truly blessed. Thank you God!!

What money is for

This is Mike by the way. I know I know I do not post all that often but I had to share this one.

Ok quick back story, when Ethan is out and about with me every time we go by a McDonalds he asks for a shake, you see he knows they are gluten free. My usual response is not now. Today was no exception. Except this time I told him that I did not have any money on me.

So now Michelle Joshua and Rebekah are all taking naps and I am working on my laptop.

Ethan: "Dad what are you doing?"
Dad: "Working"
Ethan: "Why are you working?"
Dad: "So I can make money so that we can buy food and live in this house"
Ethan: "hmmmmm no. I think you should make money to buy me a shake!"

Sounds like a good argument if you ask me!

Little does he know what is for dinner tonight. Since it is like 400 degrees out - looks like an ice cream sunday dinner! All will be pleased!

later
.mike

Our Vacation...Part 1

We decided to start our vacation up to the North Country at the crack of dawn. We figured since our children have no problems with waking us up early most mornings, they wouldn't mind being dragged from their beds at 5:15 am! Mike and I were up at 4 am so we could figure out how to pack half of the house into the car...this being our first big trip away from home since our Celiac diagnosis. (Yes, Cheryl we've come to your house for a weekend...but you have food for us to fill our celiac tummy's and wonderful accomadations!) Add to this trip a third child, and we were well on our way to needing a trailer!

We knew that if we left while they were still sleepy, we would be able to make most of the trip in relative peace and quiet. It worked...they were quiet and we were peaceful...until we pulled in to the Storyland parking lot!



So, we jumped right in with both feet. Half the time we didn't know if we were coming our going...but the kids seemed to know what they were doing!



The kids thought it would be tasty if we tried a little of the pie...a gluten free version of course...and then play us a little tune. It was music to our ears!

We decided to slow down for about 15 seconds to take advantage of traveling with our friends and capture a family moment. Fortunately you can't see the death grip we have on the boys as this was putting a serious crimp on their fun!

After a few dizzying rides, (tea cups, and swan boats) it was time to cool off with some sweet and icy refreshment...Ethan's first sno-cone! Yippeee, they are gluten free! Rebekah, however, decided a nap was a better idea...it was HOT!

We traveled around the park with a large group of friends who we met through our Celiac support group. Ethan LOVED walking around with all of the girls...(being the only boy other than his brother) he had no shortage of hands to hold...or friends to ride with.

So, after a quick trip around the farm on the tractor, and through the county side in an antique car, we decided to call it a great day, and head on to our hotel.

All in all it was a great day at the park. Thanks to the fact that Storyland lists all of the foods they provide on a 30+ page list at their website with all of the allergens listed, we were able to enjoy some of the park tasties. Storyland is also great in letting anyone bring in whatever food they want to as well. We had gone well prepared with muffins, lunch, snacks etc., and it paid off as everyone was well fed throughout the course of the day. It made for such a wonderful time!

Cousin Craziness

A small glimpse of my days...

Time...

...is not on our side.

I was hoping that my posts would become more regular however, we've had a change in living arrangements here at the Ouellette household. We now have my younger sister and her two little girls...Arianna 5 and Lilly 3...temporarily living with us. In fact, the only reason I am able to do this post right now is because Josh and Bekah are sleeping, Lilly and Arianna are playing (nicely) and watching TV, and Ethan is out running errands with my guardian angel...Norma! I have no TIME to do much else, and haven't even looked at all of the 300+ pictures we took on our little vacation to the north country this past weekend! Hopefully once I've looked at and organized, I will post some stories and pictures...it was a trip to remember!

Topics Avoided...by me

Asperger Syndrome

Sensory Integration Dysfunction

Special Education Programs

Individualized Education Plan (IEP)

Potty Training

Behavioral Therapy

Social Schedules/Stories

Why haven't I talked about these topics on my blog??...I'm not really sure.

Maybe it is because of the lack of time to really sit down and process everything that is going on. Maybe it is because once I do start to think about everything I become very overwhelmed. Maybe it is because I want to believe it is all just a "phase" and he'll eventually "grow out of it"

Maybe it is because I just want to cry out "it's not fair" every time he has one of his meltdowns. Maybe it is because I feel so very alone in all of this...most people see a "normal" 4 1/2 yr old. boy...spend a week in my shoes, the view will change.

Well, it's time to change all that! We originally created this blog to record our journey through life with Celiac Disease. Along the way, as our comfort level with managing the diet grew, we began blogging about the rest of day-to-day life. Well our day-to-day living has changed yet again, so along with that change comes whole new topics for us to discover and discuss.

Maybe it will help someone else realize that they aren't alone.

Maybe it will lead others to seek more information into their children's unexplained behaviors.

Maybe it will be therapeutic for me to get some of this stuff off my chest.

Maybe others will be willing to share what has worked for them, or lead us to services that might be helpful for our situation.

Regardless...it is our lives. We are a family, created and blessed by God. Some days I feel like He has given me more than I can handle. But with His help and the help of my loving husband, and close friends I'm beginning to realize that I can handle a lot more than I thought. It is just going to take time and perseverance.

So, welcome to the journey. Be prepared for some bumpy blogs...don't worry...I will still include many, many pictures and stories of the wonderful antics our family provides along the way.

Rebekah

No pictures please...


Okay...maybe just one!


Hey...wait a minute...I said just one!


Alright...if you must...


...besides, the camera LOVES me!

Our Weekend with the Grandparents

First of all...a great big THANK YOU to my parents. We spent the entire weekend from 5pm on Friday (when we arrived) through 6:30pm on Sunday (when we left) up there in Maine! We haven't been up there since before Rebekah was born, and the few times before that we only went up for the day and maybe one overnight. It had become so difficult to travel with all of the food we had to cart with us, and we were still novices when it came to what we could and couldn't eat at the time. This time however, my parents, in an effort to help us out so we could spend the whole weekend without bringing our own refrigerator and cupboard of goodies, went shopping to pick up what it was we would need. Again, thank you for doing that. You don't know how much easier you made it for us.

Having done all of that, we were able to really sit back and just enjoy the weekend. When we arrived Friday night, it was just in time to let the boys play a little in the sandbox before bath and bed. (They were exhausted from blueberry picking that morning...see previous post)

We began our Saturday morning with a tasty breakfast and coffee, before heading outside. We wanted to try to keep the kids semi-clean because we were going to visit their Great-Grandmother in the nursing home over in Portland. Little did we know that Uncle Larry planned to wash his truck that morning...and the boys decided to help!

They actually did pretty well in staying dry...mostly due to Uncle Larry not relinquishing control over the hose! It's amazing how much fun soap bubbles, water, and a rag can be!! They had a great time when we did our cars a few weekends ago...so they were quite experienced!


When they were done, we packed up and headed to Portland to visit my grandmother. She has dementia as well as several other medical conditions that require her to have constant care...she's been there for close to a year now! It's heartbreaking to see her there especially when the one thing she remembers and wants so badly...is just to go home. (She thinks home is back where she grew up when she was a little girl)

Anyway, I haven't seen her since before Rebekah was born, and wanted to have her see her great-grand kids. It always puts a smile on her face. Plus, we discovered a new snack for her to enjoy...Pirate Booty. She doesn't eat much anymore, and what she does eat she tends to complain about. The Pirate Booty however, she ate non-stop, right from the kids snack container!! She even asked my Mom to buy some more for her to bring at the next visit.

Sorry for the long post...we just had such a great time...and took a lot of pictures that just need to be posted!! :)

When we came back from that visit, we had some lunch and then went swimming! We haven't been swimming in a very long time...but Ethan remembered the pool. Joshua wasn't walking the last time we were there, so wasn't nearly as excited at the prospect of this "swimming thing".


As you can see the boys had swimmies on this time. Mike and I aren't big fans of using them because we want the kids to learn how to swim properly..,but since we so rarely go swimming, (and we haven't the money for swim lessons right now)we figured it would be a good idea due to Ethan's impulsiveness! Ethan thought it was great, and after awhile we were able to take them off so he could swim under the water. Great workout for the upper body muscle tone. Joshua didn't like them at all, so we took them off. He had no interest in leaving my body. If he could have I think he would have sat on top of my head the whole time and maybe just dunk his feet in. He was much happier sitting on the steps doing just that.

It was a wonderful Saturday, and the kids were absolutely exhausted after all of the fresh air and exercise...we spoiled them with Snickers Ice Cream Bars for supper, (yup, 100% gluten free!)and then got them in bed.
I'll post pictures and such for Sunday later...Rebekah is done with sitting in my lap while doing this post.

Out and About

As our family grows, we (I should say "I" since during the week all outings are done by yours truly!) find it more of a challenge just to get out of the house never mind to a final destination!!

Although it has slowed us down a bit, I nevertheless venture out with my three little monkeys in our "Van O Kids" to various destinations. Usually, I have my sanity somewhat in tact before we leave, rarely do I have it when we come home!

On this particular day, Friday the 13th, I was prepared to travel and meet a friend with three of her own little monkeys...so I new I'd be in good company.

We decided to head out blueberry picking at this little place called Blueberry Bay Farm in Stratham, NH. We had gone there last year...and the blueberries were fantastic. The kids had a great time sampling from the bush, and absolutely loved the Blueberry Lemonade (yes, now I remember having it last year!). At the time, between my friend and I we only had four of our little ones...this time we were seriously outnumbered.

I know I really shouldn't have, but I was prepared for the worst...exasperation followed by much yelling, disciplining, and threats to leave if things didn't change...but was pleasantly surprised by how great everything went.All of the kids seemed to really enjoy themselves...Ethan and his friend walked, (ran mostly, as well as jump and fall down whenever they could) Joshua and his friend got to ride in the wagon that I brought, and the babies took turns riding in front packs and the stroller. Not only did we manage to pick a couple of pounds of blueberries, but we even made it back to the cars to have a little picnic lunch before going.

All and all we had a great morning...and lots of yummy blueberries as well!

Birthday Cake Fun...vroom, vroom

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What fun is having your cake if you can't PLAY in it too?

Happy Birthday Joshua!

"Rockets are Red

Firecrackers are Blue

4th of July is fun

'cuz I'm with you."

That's right, two years ago on this day, we had our own little firecracker rocket into our lives...Joshua Scott Ouellette.

To this day, Joshua is the brightest and loudest firecracker we've ever seen!! He may be small for his age, but he's feisty and spirited. Although we may find his "shyness" and strong will difficult now, we know it will serve him well as he gets older. He may not take to everyone easily, but once he does, you know you are a friend for life. When he laughs, you can't help but laugh along with him, and you can tell by the gleam in his eye, that he gets a lot more of what's going on than you think.

We love you Joshua...more than you'll ever know...Happy Birthday little guy!

Tattoos (Temporary)

What to do on an incredibly hazy, hot and humid summer day??

TATTOOS of course!

They are much easier than those darn permanent ones that never rub off, and they are virtually painless...well unless your Josh, and the mere touch of cold, wet water makes you scream!

I finally had to cut them both off from their addiction, other wise I would have lost them under all of those Thomas the Tank Engine tatoos.

Changes

Ethan finally had some OT yesterday. It had been three weeks since his last session due to circumstances. Boy, did he need his therapy. We can most definitely tell when he has gone without. Even Jessica, his OT can tell when he's gone without. We haven't been doing his Therapeutic Listening either...bad mommy...I just don't remember!

However, we are now going to have to prepare Ethan for a change. Miss Jess, as Ethan calls her, will be leaving Easter Seals. The change will happen at the end of August. We were hoping to help him transition to another OT that he's worked with in the past. Unfortunately, they are all booked up, and haven't a slot of time to put him in. So, not only will he not see Jessica anymore, but he may not receive OT there anymore.

That may be a problem for a couple of reasons...he loves to play in that room (and who wouldn't?? It's a child's play land!). He also has made a great friend with the receptionist, Kathy. I'm not sure if it's because she actually listens to what he has to say, let's him sit behind the desk with her, or gives him chocolate kisses when he comes out of therapy, (hmmm) but he will definitely miss seeing her as well.

All I know, is that therapy won't be the same without Miss Jess. She is absolutely awesome with him. You can tell she loves to work with the kids because they just love to be with her.

As we were leaving yesterday, we parted ways saying our goodbyes, as usual. Well, Ethan stopped dead in his tracks, said "hold up, hold up, wait a minute, I forgot something" and went racing back to Jessica to give her a big hug and kiss, and to tell her he loved her. Jessica and I looked at each other and without saying anything...just new that this one is gonna be tough.

Where's Joshua??

It never ceases to amaze me where this child will and won't sleep!

Can you find him??

Lazy, Hazy Days

Well, it's June...according to the calendar...and although I'm not one for heat and humidity and truly enjoy these cool nights, and breezy cool/warm days, it's kind of weird not to be sweltering in the heat! I think it was hotter in April!

Anyway, we've had some great days...and some not so great days. One of these great days involved a sand box out in our back yard, (courtesy of the Taylor children who have outgrown it...thank you!) Our kiddos are obsessed with it. We had a yard sale a few weekends ago, and the boys played in there for at least two hours...straight!!

Needless to say with a combination of copious amounts of sunscreen and bug spray, sand was stuck EVERYWHERE!! So, when we dragged them inside (with much wailing and grinding of teeth) we had to bathe them.

Out of that mess we got the Dynamic Diaper Duo!

To say that Ethan is obsessed with Veggie Tales Larry Boy would be a serious understatement. Morning, noon and night this child wants to watch either Larry Boy and Bad Apple, or Moe and the Big Exit. Both excellent videos that teach about temptation, (Larry Boy) and following God's direction, (Moe).

We've also had some not so good days. For instance; Ethan has recently become very sensitive to noises...especially loud ones. For any of you who know Joshua, this is most definitely a problem. Rebekah's cries don't bother Ethan other than he wants her attended to. Usually, (just like with the phone) along with Rebekah's cries I hear Ethan from somewhere in the house "Mama, your girl is crying", over and over until she has been attended to. But with Joshua's "noise" which is worse than the screech of the Ring Wraiths from Lord of The Rings, Ethan feels it necessary to either lash out physically...hitting Joshua over the head with a symbol for example...or verbally...yelling louder by singing the marching song of the "mob of angry Sporks" from the Veggie Tales video Lord of The Beans...(coincidence???)

Anyway, either action results in a much louder Joshua because, being a toddler, he can't have his needs go unnoticed, and therefore must get louder and more insistent. Let's just say, I've become a little sensitive to noises myself, and prefer to bury my head in a hole somewhere whenever possible.

The problem we have with these behaviors is that we don't know how to separate out 4 yr old behavior, SI Dysfunction, and Asperger Syndrome. We are hoping to have a Behavior Therapist come to our house to see him in this environment and help us out with discerning this. Until then it's difficult to "fix it" because if it's the first one, then there needs to be a punishment of some sort, if it's the latter two, then we need to do some sort of intervention and therapy to help prevent it in the future. My head spins every time Ethan does something because I never know if I'm overreacting, or under reacting. Should he be punished, or should it be noted and find a way to prevent it from occurring the next time? Sometimes I think it would be easier if he'd been my second child because then maybe I'd have an idea of what to expect. But then I think, all kids are different, even within the same family, so it wouldn't really matter anyway.

We've found ourselves turning more and more to God, praying, and really trying to Let Go and Let God, as a friend from my bible study said to me. It's hard to let go of that control and trust in God to provide us with the answers we so desperately seek. So, for those of you who have been praying for us...we thank you from our hearts. Please keep our family in your prayers, because it has helped get us this far, and for that we are truly blessed.

Big Brother Ethan taking care of Joshua at Spectrum Gymnastics during the Taylor birthday party.

My Husband

Father's Day isn't until next month, but I wanted to write this post today to let you all know how special my husband is to me.

I don't need to wait until a special day to tell the man I love just how much I appreciate and love him very much. So, for those of you who aren't into gushy, gooey, lovey kinds of words...consider your self warned and don't read this post!

As for the rest of you...let me tell you why I love this man:


He is my best friend: he is always there. He has seen me at my worst and at my best. He has stuck beside me through more than anyone I've ever met, and I know I can confide in him with all of my heart and soul.

He is my lover: (ya-ya) he is always patient, especially during these post-partum months when all I want to do with my free time is sleep.

He is the father to my children: he is a large child, role model, and disciplinarian all wrapped up in one. Our children know they can go to him for roughhousing, as well as comfort and they both long to be with him when he's not around. (Especially if he's out "jeep'n")

He is my husband, my soul mate: "for better or worse, for richer for poorer, in sickness and in health" we promised to love and respect each other for all the days of our lives. Yes, we've only been married for 6 1/2 years, but lets face it, we've had a roller coaster ride.



From our children being hospitalized for various reasons to all of the medications we've had to do at all hours of the day and night, he's always been there.

For every phone call he's received from an incredibly frustrated wife because the kids are being loud, the bills have piled up, and the sink is no where to be found, he's always on the other side listening.

For every night he comes home from work to a disorganized house, whiny kids, exhausted wife, and dinner still not ready, he drops his bag, removes his tie, rolls up his sleeves and digs right in to help.

For every time he hugs me even when I don't want to be...I love him.
For every time he lets me calm down, and work things through...I love him.
For every time he takes the kids, so I can have a few moments...I love him.
For every time he tells me to do something for myself...I love him.
For every tear he has wiped away...
For every time he helps me back up when I've fallen...
For every thing above and so much more...
I am thankful for, blessed to have, so grateful for the love he has for me.

I LOVE YOU, MICHAEL!

Late Mother's Day Thanks . . . Again

Well better late than never.

Once again I am writing this from work so I will try to get some pix up tonight.

I went back to last year's post about Mother's Day and a few things have changed. We did not spend it in a hospital (thank God) and now we have three children.

A few things have not changed. Michelle is still an amazing mother. She stays at home with 3 children, going from the moment she gets up until the kids are in bed. And even then Rebekah is still nursing. She goes from playdate to therapy to doctors appointments, and that's all in one day!

She works harder than I do. I know I've spent the day with just the boys and I am drained at the end of the day. She takes care of 3 everyday. I don't know where she gets the strength. It amazes me everytime I come home. Plus she has me to put up with me as well!

So from you three children "We Love Mom!".

Happy Late Mother's Day!

Love,

All of us!
(with a little help from daddy)

Some New Stuff...

Okay, so I've written this post a couple of times now, deleted and started over. I just haven't figured out a way to put into words what I'd like to say. I've decided to take the say-what-I-have-to-say route and go from there.

First off...Ethan was diagnosed with Asperger Syndrome last Thursday.
Secondly...he needs to have his adenoids removed and that is scheduled for the 15th of June.

There...I said it.

Now a definition: "Asperger Syndrome (also called Asperger Disorder) is a neurological condition that affects social and emotional interaction. It is a developmental disability, which means that it is most likely present at birth and affects development throughout life." - Asperger Syndrome and Your Child: A Parent's Guide

Within Asperger Syndrome (AS) there are various levels of severity. These levels are based on four essential qualities that characterize children with AS. They are impaired social interaction, impaired communication, repetitive or odd patterns of behavior or interests, and unusual responses to stimulation and environment. Ethan has a mild form of all of these. Some are easier to notice than others and if you aren't around him often, you may not even notice. Most times AS isn't diagnosed until children reach the preschool/kindergarten years because that is the time that their social world really begins to expand.

Now, Ethan wasn't enrolled in a 3yr. old preschool for several reasons. 1. three years old is too young to start "school" in our opinion unless there is a developmental reason; 2. we want to home school our children; 3. we were expecting our third child at the time and didn't want him to connect his leaving for school with the arrival of his sister and 4. he isn't potty trained yet!

However, we have a meeting on the 18th to determine where and when he will go to a developmental preschool. The Developmental Pediatrician who diagnosed Ethan, wants him in a program that is 3 half days a week so that he can be part of the social aspect of school, but still receive the therapy he needs. He is to continue his occupational therapy with Jessica through Easter Seals, and receive therapy from a behaviorist, and a speech therapist while attending school. The speech therapist will help him with language pragmatics, (non-verbal cues, body language, personal space, etc.) as well as communication, (how to ask a group of kids if he can join them in a game, respond to questions with appropriate answers etc.) The behaviorist will teach him appropriate ways to act and respond in social situations.

I could go on and on with all the info. there is on this topic, but as it is it has taken me several days just to write this. So, I will refer you to a website: www.udel.edu/bkirby/asperger/ Go to the menu bar on the left of the site and click on "What is AS?" It gives you more information than I could as I'm still trying to understand it all. I will warn you though, for those of you who don't know, AS is considered part of the autistic spectrum. So everything you read will in some way be related to autism. Everyone we've told so far has taken the news differently. Thankfully we have a great network of support from friends and family.

As for the adenoids...well through a sleep study we found out that the snoring that Ethan does, wakes him up several times throughout the night. Because of this he doesn't get the obvious rest he needs, which can then lead to behavioral issues. This doesn't mean that once his adenoids are removed he will suddenly be this well behaved angel of a child...but as his doctor stated..."it certainly won't make things worse to have a child whose had a good nights sleep!" Because Ethan will need to be taught so many of the behaviors he should have learned over time, the better rested he is, he will not only learn new things but also be able to retain them.

Easter Time

Happy Easter! Okay so it's a little late...buy you have three little children under the age of 5 and see how long it takes you to post something!! :) I load the pictures on one day and then several days later, get to the writing part of things!

Anyway, we had a wonderful day. It didn't turn out the way WE had wanted it to, but it still ended up being a beautiful Easter. Here's why:

We didn't go to church as a family...Mike had gone to the Easter Vigil to watch some friends receive their sacraments to become members of the Catholic faith on Saturday night, so I went to Sunday morning mass at 8am with Rebekah!

We didn't do an Easter Egg Hunt...we usually attend our friends hunt at their house but this year due to the snow on the ground the eggs couldn't be hidden outside. So they had to cancel it. It would have way too much to have that many children in their house hunting eggs.

We didn't make the kids their Easter Baskets, (er the Easter Bunny didn't)...with all of the illnesses, hospitalizations, new baby, tired mommy, inability to get out of the house and do any kind of sane shopping, and a serious lack of money due to the above...we just didn't get around to it. Plus, I have to admit, I knew they would be spoiled by their grandparents, (thank you Grammy, Grampy, Pepere, and Anne Marie).

They were also surprised by their Auntie Lee Anne and Uncle Pete who sent them a gluten free basket in the mail from a bakery in California. It had chocolate covered peeps, pretzels, and marshmallows. It also had two different kinds of flavored popcorn as well as some chocolate chip cookies. It even came with a little blue bunny and a plastic basket. Then their Auntie Lori and Uncle Dan gave them the ultimate treat...a large box of Junior Mints (for each of them), also known simply as Juniors. Ya, I don't think they noticed a lack of baskets from us!

What we did do...we had a terrific tasting gluten free coffee cake (Gluten Free Pantry Coffee Cake Mix) with the kids, followed by a fantastic meal as a family with Grammy, Grampy, Auntie Sherry, Uncle Mark and cousin Jack. We followed that up with chocolate fondue at Auntie Lori and Uncle Dan's house where we visited with Auntie Lee Anne, Uncle Pete, Pepere, Anne Marie, and cousins Ian and Emma.

We dressed the kids up in their Easter outfits because how often do you get to see your children looking so handsome and pretty in pastels?? (Looking at the thumbnails of all of those pictures makes them look like Easter eggs.!)

"That everyone may eat and drink, and find satisfaction in all his toil-this is the gift of God." Ecclesiastes 3:13

We ate, we drank, and at the end of the day we were able to count our many blessings from our family. Our children were tucked into their little beds at the end of the day...full of chocolate...but tired, happy and loved. What more could we ask for...it wasn't perfect in our eyes, but it was the way it was meant to be. Maybe it's my age...(32), maybe it's having been married...(6 1/2 yrs.), maybe it's from being pregnant so many times...(4), all I know is I've come to trust in God more now than at any other time in my life. What better time to find trust in Him than at Easter time. Just look at my three beautiful little blessings.

Therapeutic Listening (TL)

"Therapeutic Listening (TL) is an expansion of Sensory Integration (SI). It is an auditory intervention that uses the organized sound patterns inherent in music to impact all levels of the nervous system. Auditory information from TL CDs provides direct input to both the vestibular and the auditory portions for the vestibular-cochlear continuum. The emphasis of TL is on blending sound intervention strategies with vestibulo-proprioceptive, core development, and breath activities so as to sustain grounding and centering of the body and mind in space and time. Providing these postural, movement, and respiratory activities as part of the TL program is critical." In other words...our ability to function in our world relies heavily on what we hear and how we perceive it. Listening is completely voluntary, and when we use it our ability to monitor and then actively respond to changes in our environment, happens without us even aware of it.

Above I mentioned the vestibular-cochlear continuum. Basically it's the link between the two systems and how they effect they way we act or react in situations. The cochlea, utricle, saccule , and semicircular canals form the the bony labyrinth in the inner ear. This processes the higher frequency vibrations that we know as sound. The vestibular end of the canal, processes the lower frequency vibration that we call movement. They work together to send information to the brain to help us function and exist in our surroundings.

The program involves listening to a CD that varies in musical style, types of filtering, and levels of complexity. The music is electronically altered to elicit the orienting response which sets up the body for sustained attention and active listening. (Note: I listened to this music and I thought I was going to grind my teeth out of my head! That's how "altered" the music is. Ethan listens it to without question...doesn't notice a difference!) A new CD is introduced every 2 weeks and the program is completed in three months. Then the child is put on a "maintenance" CD for a while after the initial treatment.

Ethan is on week 5, his third CD. He is supposed to do his "listening" twice a day for 30 minutes each session. We at least get it done once a day. We try to set him up with coloring, playing in his kidney beans, or playing his new favorite game of Hungry, Hungry Hippos. He can do anything while listening to his music except watch TV. We've done it in the car, but problems arise with the headset fitting on his head within the confines of his car seat. It's a lot tougher than I thought to get the second session in during the course of the day though. We do our best.

His OT, Jessica says that she has noticed an improvement in some of his vestibluar (movement) areas. We have noticed that Ethan is now hearing things that he's never noticed before like the birds chirping (which he became quite angry at the other day because they were too noisy!!)

Unfortunately, (like anything else) things have gotten worse instead of better. We were warned that as changes occured in his system, these things would happen...frustration, anger, testing. All of which are normal 4 year old issues, but more so than usual. We are only half way through the treatment, so we'll see what the future holds.