Oops-a-Daisy

Moments ago I was doing a math lesson with Ethan. It lasted around 20 minutes, which is pretty good for him. We were working on pattern recognition...and until the last 5 minutes he did awesome!

One of the great things about homeschooling for us is the ability to work one-on-one with Ethan for a short period of time. It also allows the other kiddos to have some independant play time without their big brother taking over.

Well, Miss Rebekah...oh so quietly...did some independant play of her own...

...yes, she climbed up there by herself!

...yes, those are dirty clothes that have yet to go downstairs...so of course she would play in them!

...and yes, I win Mother of the Year as I photograph her toppling out of the basket!

p.s. she's okay!

Happy Thanksgiving

I recently read a post on a friends blog (entitled Happy Thanksgiving) about how stressed out she was preparing a gluten free Thanksgiving dinner in a gluten home. I can't tell you how much I appreciated her attention and dedication to providing this meal all because of her love for this one person in her family who has Celiac Disease. I am constantly amazed at how far some people will go to make sure the food they are feeding their loved ones is safe for them to eat. To these people I say Thank You!!

Having said that...we were in a different situation this Thanksgiving. Our home is 100% gluten free. Everything we make and consume in our home is safe for everyone to eat. It is our belief that our children should have a place where they can eat whatever we have in the house comfortably without the constant fear that it might make them sick. It is also our belief that they learn how to deal with food situations outside of our home.

Ethan is really good at mentioning his gluten free status. He will usually ask whomever is giving him food if it is gluten free, even if he knows the answer. Joshua on the other hand, is an opportunist who will sample anything if it is in arms reach. Knowing this, we made a plan for our Thanksgiving.

Last year we had our first gluten free dinner in the safety of our home. This year, however, we were invited to share in a large family feast...on my husband's side. The Ouellettes have had several large family Thanksgivings over many years. The last one before this was about 8 years ago, a month after we got engaged.

Mike and I discussed it and decided the best way to approach the meal this year was to cook our own Thanksgiving dinner the night before. So, we cooked the turkey, all the fixings and dessert all day on Wednesday. On Thursday morning, we made up three round tin plates with the whole meal, wrapped them in tinfoil, and packed them into a cooler so we could just throw them into the oven at the clubhouse where we were meeting. We also packed gluten free brownies, as well as eggnog. That morning we also had Mike's immediate family come over for a gluten free breakfast. We made a bacon and egg quiche, coffee cake with cinnamon icing, apple crumb pie, and blueberry muffins. Eating that late in the morning took away the need to stuff ourselves on any appetizers before the meal, since we wouldn't be able to eat any of them anyway. (My sister-in-law was kind enough to make up a smoked fish platter without any crackers or dips directly on the plate. She checked the labels carefully to be sure that all the fish she was placing on the tray would be okay for us to eat...thank you!)

So, we were able to sit down with the entire family, and not have to stress about what we were eating. It was not only easy, but incredibly tasty!! Even my husband, who was a little leery about doing it this way, was impressed by how well it worked out. He even suggested that maybe we should do it like this for any future large gatherings. (Plus, it gave us lots of own turkey leftovers which in my opinion is one of the many great outcomes of preparing a Thanksgiving feast!)

Rebekah too...

Last night I had this thought..."hey I forgot to mention Bekah's health stats too!" So, before the "trolls" (people who have nothing better to do than read random blogs and post rude comments anonymously) can tear me apart for being a bad mother...again...I have Bekah's health notes.

Rebekah

This little girl is growing just fine, which is why she wasn't included in the medical update. She isn't under the doctors care...weird! :) She did just have her 9 month check up, even though she is 10 1/2 months old! (Ya, pedi offices aren't always on time with these things, and since I do only one immunization every three weeks instead of all at once, it doesn't really matter.)

Anyway, she weighs in at 16lbs. 8oz and she is 27 1/4" long, (2 ft. 3 1/4 inches). That would be 10th percentile for weight and 25th for height!!! I know...not only on the charts but double digits!! Other than cutting teeth, she hasn't really had any problems. She eats, sleeps, and is in general just a happy baby! And since I neglected (bad mom) to post her info with her brothers, l will post another picture of her.

This is a "fresh" picture, taken just a few moments ago! Enjoy

Medical Update

We haven't done a medical update in quite some time. This blog has become a great place for us to document the day-to-day life of our family as we live and grow with ALL of the many joys and hardships that come along with just being a family.


So, here it is.

Ethan

We continue to see Dr. Hofley every 6-8 weeks to keep an eye on the weight gain and growth pattern for both boys...but especially Ethan. Well, great news...he's still on the growth charts! Last time I posted their medical update Ethan was in the 1st percentile. Well, now he's on the 2nd percentile!! That's right! He actually gained almost 2 lbs. since his last visit! He is now a whopping 31.3 lbs. of soon to be 5 year old!! The more amazing stat though is his height...he is now 38.7 inches (3 feet 2 inches)! He's actually in the 5th percentile (I think) for that! He can now wear 4T pants...well mostly. He still has several 3T pants that fit him. It's amazing how many people will ask him how old he is and if he doesn't answer right away they will say "I bet your 3yrs old right?" He is just that tiny! I don't care though, his appetite has improved by leaps and bounds. He has become a walking stomach that desires food almost any time of the day! Yipppeee! His only meds. now are Prevacid for stomach upset, and the laxative that he's been on since he was 18 mos. old. We are hoping to continue to wean him off of the Prevacid, but will keep him on the laxative until he potty trains...which isn't happening yet.

Joshua

What a charmer! That smile has rescued that tiny tyrant from many a punishment!! :) This little man is doing well too. He is still in the first percentile even though he gained almost two lbs. since his last visit as well. He is now at 22.5 lbs! His height has improved as well...at 31.7 inches (2 feet 7 inches) and that puts him in the 2nd percentile for that. The doctor is very impressed with the improvement as most kids lose weight or don't grow much during the summer months leading into autumn due to their outdoor activity level and lack of sitting down for meals. Lucky for us our kids are grazers...they eat many more little meals during the day than actual sit down 5 course meals. I've also switched to using coconut oil instead of olive oil or butter in most of our cooking now which adds essential fatty acids to their diet. Plus it's just tasty! The only med. that Josh is still on is Prevacid for possible reflux. The good news is that we haven't had to nebulize him since we removed his 12 oz. of whole milk a day from his diet. We'll see what that does for his weight gain, but at this point the struggle and inevitable fight from Josh when we nebulize him just isn't worth the calorie intake from the milk. We are finding other ways to up his calorie intake right now so we'll see if it makes a difference at their next appt. on December 31st.

Frustration

It has come to my attention that most people in the Autistic community refer to their children as non-typical or non-neurotypical verses "abnormal". This means that they often refer to "normal" children as typical or in some cases neurotypical children. Why the difference?

Definitions:
NORMAL - conforming with or constituting an accepted standard, model , or pattern; esp., corresponding to the median or average of a large group in type, appearance, achievement, function, development, etc.; natural; usual; standard; regular.

TYPICAL - having or showing the characteristics, qualities, etc. of a kind, class, or group so fully as to be a representative example

In other words, for me, to "be normal" means you are accepted by the general public in all of your behaviors and endeavors. So, to be abnormal, would mean you aren't. However, if you classify children as typical, you aren't stating an acceptance level on any part of it. Instead, you are pointing out that although they aren't part of one type of group, they are in fact just part of another. It doesn't matter whether it is accepted for the good, bad or otherwise they just represent another group.

Why the frustration??

This morning Ethan has decided to act very much like his 2 year old brother. He is taking toys away from Rebekah, just because he wants to play with it right now. He has been throwing more and more physical tantrums over VERY small things like whether or not he is allowed to have more juice. He will "play" Tupperware next to Rebekah not with, just because she is doing it and gets upset when she takes a bowl away from him. Yet, when he's playing blocks, she better not dare to take one from him. He has no concept of age difference. We don't have any other toys in the house except toddler toys because Ethan is such a destructive player, he will break anything he plays with. We also don't have anything that is "age appropriate" because he won't play with it "appropriately". It instead becomes part of a big pile of stuff that he has to constantly load and unload into piles with his trucks or crash into.

He is not a typical soon-to-be 5 year old. So, when someone tells me, "Oh he's just being a normal kid"...I get frustrated. I get angry...because in the day-to-day stuff his behavior is anything but "normal". It's typical...for him...because he has Asperger.

First Day of School

Are you confused?? Well, don't be...this IS his school. We are officially signed up with the Seton Home School program for Kindergarten. Today was his first day of school, so we took a picture to mark the day.

Although he won't be 5 until next month, we decided, with the advice from Seton's counselors, to start Ethan's K program now since the program allows for two years to complete it. See, one of the many reasons we decided to go with Seton is because of their special education department. They know what Asperger Syndrome is and have found many of these students who are in the program, do exceptionally well...without the special ed. program. That's the beauty of homeschooling...you can do it at your child's pace. So, we started the program now, even though he doesn't need to be enrolled, according to the state laws, until next fall.

So, far...he LOVES it. Tonight before bed he asked if we would do more school tomorrow!

ROCK Halloween Party

We had our very first ROCK Halloween Party this past Friday. It was held in the conference rooms at Dartmouth Hitchcock where we usually hold our meetings...so there was plenty of room. It was awesome!

This was a first time Halloween party for many of the kiddos that came, and for those that had been to one before, it was the first time they could participate and eat whatever they wanted!

Of course it was held as a costume party...how do you have a Halloween party without costumes!! The kids looked awesome. We had a costume contest where we voted for a winner in three categories: Best Costume, Most Original Costume, and Funniest Costume. Joshua won for Best Costume, and Ethan won for Most Original. No, the voting wasn't rigged...there were about 15 kids there...and we weren't in charge of the voting!! :)

We also had a pumpkin decorating contest. It was the most quiet we had during the whole party. Imagine 10 or so kids, diligently painting and decorating their pumpkins. It was very serious business...as you can see by the beautiful pumpkins that came out of it! :)

The best part...from Ethan's point of view, was the donut eating contest. He had been talking about those donuts since we ended the meeting them month before. One of the moms that came to the party made these delicious apple cider donut holes that we placed on plates for the kids to eat...without their hands...very funny!
We ended the night by giving each child the chance to take a wack at the pumpkin pinata another family brought for the party...it was stuffed with lots of yummy gluten free goodies! All-in-all it's a night my kiddos won't forget...

9-1-1 Registration

Easter Seals was holding this event last night for anyone who has a child with special needs. It was geared more towards children who are on the autistic spectrum though, so we attended.

What this will accomplish is two things...first, it helps the emergency and medical community see the different faces of autism. As most people know, no two children are alike...and it's the same with autism. There are many different forms and levels of autism and last night we saw quite a few of them. The emergency response community are now being instructed to look on the refrigerators at homes when they respond to an emergency. We are instructed to post our child (ren)'s information in plain view for them to find. It helps them identify the possibility of additional care needed to help avoid escalating or scaring this particular child.

Secondly, the event was designed to help our children see, touch, hear and meet these people who, in an emergency, would be the people our kids would have to interact with. We're glad we went.

Ethan didn't like it at first. He had been talking about it all day...ALL DAY!! Every time he brought it up he'd flap his hands and arms and look up at the ceiling because he didn't know what to do with the excitement. For that very reason, I told him early on because I wanted to take the time to talk about it throughout the day and make him aware of the lights and sounds that accompany these people and vehicles. Yes, he's heard sirens before, but not so close. For those of you who don't know, Ethan is very sensitive to loud noises and bright lights...unless he is the one in control of them. When the fire truck first arrived, for example, it sounded it's horn and siren...and scared the beejeebee's out of Ethan. At that point he wasn't interested anymore and went right inside the building. We gave him about 10 min. or so to reach what is called baseline, by letting him color and play puzzles with some of the other kids, and then I brought him outside. (The first time was with Daddy)

With lots of encouragement and reassurance that they wouldn't do the siren again, we got him into the fire truck. He put the helmet on, and stared at all of the buttons and controls. You could tell it took a lot of will power not to reach out and press everything at once. (That and having me say over and over, "leave the buttons alone" seemed to work!)

Once he got down from the truck, the firefighter helped Ethan into a pair of boots and pants, and a coat. The coat was so heavy, Ethan crumbled (him and all of his 31 lbs!) under the weight of it! He didn't like the coat, but loved the boots and pants.

After that we went over to the police car. Ethan loved that it had a computer in it, and told Daddy that he needs one for the Jeep. The policeman even let Ethan talk over the speaker phone in the car...that kid never tires of hearing his own voice...amplified!

Soon after the ambulance arrived and Ethan was all warmed up and receptive to another brightly lit vehicle. He talked with the paramedic and was allowed up inside where the stretcher and all of the equipment is stored. He, of course had a million questions...and answers...not always on topic...but enough to occupy the paramedic for over 15 min. We finally told Ethan he needed to let the other kiddos who were getting up the courage to come over, get in the ambulance and check it out too.

So, we took them to the van to get them changed into their pajama's. Well, Ethan had a meltdown...he wasn't ready to go. He started screaming, and physically fighting off Mike who was trying to wrangle him out of his clothes and into his p.j.'s. Finally, we told Ethan that we would go back and visit after he put his p.j.'s on but then we would need to head home.

Well, since the ambulance had parked directly behind my van, I asked them if they would mind moving it so I could back the van up when it was time for us to leave. No problem, but, would it be alright if they took Ethan for a little ride in the front seat. Oh...my...goodness...I thought Ethan was going to explode...immediately he stared flapping his hands, turning his head and doing raspberries (another excitement stimulus), and happily took the paramedics hand to climb in the front seat. I bet you can guess what happened next...let's just say it got very noisy. Ethan was allowed to push any button he wanted: sirens, horns, lights etc...and he did, happily. He loved his 2 minutes of noise-making bliss, after which he was more than ready to go home...riding in the Jeep of course!

ASD and TCI

No they aren't email chat words like "A Spying Disciplinarian" or "Teacher Came In". The most I know of that lingo is lol...yes I'm getting old.

What they stand for are Autism Spectrum Disorders and Therapeutic Crisis Intervention. I know...a mouth full, but that was the name of the class that Mike and I took this morning. Easter Seals offered this course to parents and caregivers of children who are on the spectrum...which includes Asperger Syndrome. It started at 8:30am and went to 12:30pm. Yes, 4 hours of us trying to keep Rebekah quiet while paying attention to the speaker. We had our friend Emily at home holding down the fort with the boys. Fortunately for us, she was still in one piece when we came home, though we think they must have roughed her up a bit, because she said she'd love to do it again anytime!! :)

Anyway, we weren't sure what to expect going in...but we left with some interesting information. Now we can process it over the next week and go back again on Saturday, same time, same place, to finish up.

The course is typically taught to professional care takers of children on the spectrum. It is also done over the course of 4 days...about 36 hours worth of training. They narrowed the information down to 2 days, 8 hours for all of us. So far it has opened our eyes to some of what is going on in Ethan's world. It has also allowed us to sit among parents who completely understand, empathize, and can advise us that everything is okay. That our doubts, frustrations, and anger are all normal feelings and that they will come and go depending on the day.

We look forward to finishing up the course next Saturday with the hope that we can walk away a little more educated, a little more aware, and a little bit stronger in our parenting skills for Ethan.

After all...this face isn't the face of Autism or Asperger Syndrome...

...it is the face of our handsome son, Ethan Daniel Ouellette...and regardless of the difficult days, we love him with all our hearts. God blessed us when He gave us Ethan.

Apple Picking

Okay, so they aren't actually picking apples in these pictures...but do you know how hard it is to wrangle all of these kids out in the apple orchard?? Seriously, this is one of the few pictures where we can see all of their little cherubic faces! Granted Ethan is chomping on an apple that I removed from his sticky little hands...but you can see his face. Besides, kids love it when parents let them sit on vegetables. Not an everyday occurrence you know. This pile of pumpkins provided a wonderful picture spot and the flowers made for an awesome background.

As far as the apple picking went...we walked(chased after the kids in search of the perfect trees)...we talked (yelled through the trees to keep track of everyone)...we picked (apples, leaves, sticks, anything that wasn't tied down)...we had a wonderful time! The only downside was it was too warm for picking apples...no cool breeze...no crispness to the air...very unfall like. However, in true autumn spirit, we took our apples home...and since I haven't perfected the art of a gluten free apple pie yet...we made apple cinnamon ring pancakes...mmmmm yummy!

Too Darn Cute!

The sounds you make could make a banshee quake,


The tantrums you throw, make quite a show,

However...

My love for you will continue to hold true,





And no one can dispute,
'cause you are too darn cute!

Potty Training

Well, my sister and her daughters have left the building...so to speak. They actually moved out last Thursday evening, but have officially moved their residence to my parents house in Maine. We have spent the last 7 or so days trying to reclaim our house. Mind you, my children can and do make quite a mess of things all by themselves...however, when you add two more children and one more adult to the mix...disastrous.

Besides cleaning, and rearranging furniture...we are also trying to reclaim the little progress we had made with Ethan's behavioural issues. He learned a few new things that we have to help him unlearn, and we have to reteach him some of the tactics he had learned to deal with over stimulation. So, it's been an interesting week.

Due to the amount of children I did have here, the TV was on... A LOT! So, we are trying to "wean" him off of that. I tried cold turkey...not good. The tantrums and meltdowns that resulted were unmanageable. So, we are back to trying to work with his schedule, unfortunately with setbacks as well. We are working with a new OT and she's had some awesome suggestions, so we will try that.

The big thing that I really want to work on however, is potty training. For those of you who've been gracious enough to change Ethan's diapers...know exactly why this is a priority for me. Besides the fact that all of my children are in diapers...due to the laxative that Ethan is still on he will have a bowel movement 3-6 times a day...sometimes more! YUCK! The problem is that it bothers me more than him. He doesn't smell it. He doesn't seem uncomfortable with that in his diaper. In fact he would go all day in one diaper if I didn't drag him down to get it changed...simply because I can't stand the odor anymore.

In talking with several of his docs., his OT, and in some reading and research I've done...we've all come to the conclusion that it must be a sensory thing. He never comments on scent...good or bad. He never complains about his clothes...in other words...they could be on backwards, inside out, or two legs in one hole kind of thing...he doesn't notice. (Yes, all of these have happened!) He confuses the senses of hunger, tired, thirsty and temperature all of the time. So, why would he be able to tell me he has to go to the bathroom?

He can't. In reading one of the many toilet training books for autistic and spectrum children...it suggests the possibility of habit training. Yikes! Whose habit...his or mine?? What it comes down to is bringing him to the toilet every 20-30 min. every day, no matter where we are, no matter whether he's gone in his diaper, or actually went on the toilet. It's a matter of me setting my schedule (ha-ha-ha...schedule) around this habit of training him to sit on the toilet regardless of his need to urinate/defecate. We can put pictures of toilets on his schedule as every other activity for him to do, and I've even created a Toilet Rules poster to place in the bathroom so that he knows exactly every step that goes into using the bathroom.

Toilet Rules

STEP 1 Pull DOWN pants
STEP 2 Pull DOWN underwear

STEP 3 Sit on toilet
STEP 4 Use the toilet paper

STEP 5 Pull UP underwear
STEP 6 Pull UP pants

STEP 7 Flush the toilet
STEP 8 Wash hands
STEP 9 GO PLAY!!

We even have pictures that go along with each direction. The hardest thing for me to deal with is...he as absolutely NO INTEREST whatsoever. How do you teach/train that? I can't show him what it feels like to need to urinate. It's a sensation that most children learn over time and eventually becomes part of daily life.

Of course I worry that my child will be in diapers for even longer than he already has been...let's face it, he will be 5 in December. I know I just have to shake off the looks, the stares, the comments that get (intentionally and unintentionally) thrown my way, for having a "normal" preschooler still in diapers. It's at those times I wish I had a card that I could just hand out to those people that said "I have Asperger Syndrome and Sensory Integration Dysfunction...if you'd like to learn more feel free to ask my Mom!" But then I feel like I'm just being as judgemental as they are.

Only time will tell...and since we've made the decision to home school him...(a whole other topic for another post!) we have all the time in the world.

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.