And Allison surprised me with this..

 

Make an on-line slide show at www.OneTrueMedia.com

Cheers,  Stacy

Today was a good day until I received an email from the school district.  Attached was a 22 page report of Jackson's re-evaluation for special education services.  Twenty two pages of "significantly impaired", "below average for age", "not conversational", "does not look at person", "misses the cues", "does not talk clearly", "does not realize the need to be polite", "cannot have an interesting conversation with him", "is concrete", "extremely low", "obsesses", "repeats words out of context",  etc, etc.  I know it to be true.  It's not a surprise, but I swear it never gets easier seeing the black print. 

So what is a girl to do?  Dry the tears and pour the fifth glass of wine and hope to pass out.  Tomorrow is a new day with my delightful and beautiful boy and all of his significant impairments.

I received a note from one of my most favorite people in the world this morning.  I have been struggling with all things autism trying to find a way to push it away from the surface.  She comes with this...

"...since we can't bubblewrap the world, add visual icons to the universe in order to smooth all the transitions, and make everyone play fair and nice 100 percent of the time, I guess the next best thing is to do what you're doing..."

It was perfect. 

I wiped my tears, put on my lucky earrings, and tackled the dentist with Jackson and Allison for the first time this morning.  It has been two plus years in the making. 

We did it.  Jackson did it.  Allison did it.  We walked out of there with prizes in hand, clean teeth, x rays in their charts, and no cavities.  Jackson had two "episodes" that threw off the hygienist, but he recovered in record time in both instances.  Allison was smooth sailing a couple of chairs over.

So proud.

Thank you for your words!  I couldn't have it done it without them!

Jackson A+.

Over the weekend, we purchased Jackson a booster seat since he is a big kindergartner and all.  He was quite anxious about it at first, but seemed to calm himself when I took him around the block in his rocket booster blast off seat. 

The morning routine went well.  Jackson was a tad on the sleepy side but everything and everyone came together for AIS (arse in seat) at 7:15.  We all received one last sprinkle of jitter glitter, took the first day of kindergarten pictures, and we were off.  Allison didnt like it.  She pulled on my dress on the way out the door and was screaming for mommy.

We get buckled in and ready to blast off in our new booster seat.

Off we go.  I am completely focused on my new mission (hoping that Allison recovers) and don't notice that Jackson actually did blast off from his seat and is now crawling around in the very back of the van.  I don't think ...What the hey, we are in a school zone.  Not much can happen while driving 20 miles per hour and I didn't grow up strapped in.  I use a raised voice and tell Jackson to get in his seat immediately.  At the light when I can get him buckled back in, he starts to whimper.  I don't think he has really ever heard me yell before.  We get to school and he recovers.

Only the upper grade kids were in the cafeteria and it was very loud in there.  With covered ears, we made our way to our new teachers room.  We are welcomed with open arms and find a place for the backpack and lunch box.  Ms. Teacher breaks out the play-do and Jackson sits down for all of 2 seconds and makes his way to the bathtub.  There is a bathroom in the room filled with frogs and pillows that he claimed as his own on meet the teacher night.  He gets to the bottom and puts all of the pillows on top of himself.  I recognize that he is seeking the input so we just roll with it.  His other friends are entering the room.  Jackson decides that he isnt ready for that so he starts to wander.

Jackson then problem solves...I know.  I will take the door stop and let the door close in your face.  Again and again.

I get a little antsy as this is not the best way to make a friend and other families start to think the same thing.  I get him redirected as the teacher is warmly welcoming all of the her new family.  He doesn't like it.  He wants to go.  He wants to leave.  So he does with the door stop.  I catch him and set the door back up.  We go back to the table to try to meet some friends.  I give him the five minute warning and he starts to whimper again.  It was a sad cry and not the meltdown that I remember so fondly when separating.  He just sat there with his hands over his face as if he was embarrassed to cry. 

I leave him and go to talk to his sped teacher.  This is my safe place.  I see kiddos that Jackson is in group with and parents that I have connected with.  I go back to check on Jackson a few minutes later and he is in exactly the same position at the corner seat of a back table still with his hands over his face.  All of his "friends" in the room appeared to have it all together, talking to each other, introducing themselves, making frogs out of play-doh, etc.

I got sad.  I got mad.  I thought of Jackson's other friends challenged with autism and how this huge transition was just too much.  I got really mad.  For that moment I could only see the autism.  Why and how can't his brain process it all as it should.  I left the school in tears and could not make them stop.  They were tears of anger.

I cried on and off all day long and did a good job of making my co-workers uncomfortable. 

3:00 came and here comes Jackson in one piece with a slight smile on his face.  He was exhausted.  His sped teacher said he had a great day...big thumbs up.  It could not have been better.  He spent almost the entire day mainstreamed without support.  He was shadowed until 9:30 ish and went to specials all by himself.  A huge weight lifted from my shoulders when I saw him.  My brain was starting to process more rationally. 

Jackson will be okay.  It turns out that Allison told Mimi that new school is not so bad anymore.

We fed our hearts and tummies with a first day of school success ice cream treat.  Indeed!

Night,

Stacy

I just had my 37th birthday.  My son is going to kindergarten.  Allison is going to big girl school and not liking it.

Stop.  I am putting on the brakes, but 'it' isn't stopping.  It's time, but transitions are so hard (for me too.)  When I look back about three years ago, I remember trying to get to this day.  Jackson is going to Kindergarten. 

I know we are in good hands and that the team that we have in place is ready for Jackson.  I know this.

We are transitioning from one family to another that is welcoming Jackson with open arms.  I will ask questions about fill in the blank and the response will be..."How do you want it to work?  We are here to support Jackson."  Jackson's primary teacher has been teaching for fourteen plus years and won me over.  She gathered all of her kiddos on a frog carpet, showed pictures of herself from her first day of kindergarten, read the story 'First Day Jitters', and sent all of the kids home with a special note and jitter glitter.  Jackson had a hard time when he had to go off with the other kiddos while Jeff and I stayed for the orientation part.  His sped teacher was not even phased and had all kinds of comforting words for us. 

We all walked to the car.  I was overwhelmed and wondering how Jackson is going to make it in this big school with zero the hero, etc. when he doesn't even know what is going on (he seemed to be off in his own autie world during so much of the night).  I buckled him in, his arms shot up in the air, and he says "I'm going to Kindergartener."  Maybe he is getting some of it.

I spent time during our going to bed routine going over the Kindergarten rules, all the good things that could happen at Kindergarten, and sprinkling his jitter glitter.  He wanted Shamu to have some and Elwood to have some too.  We saved some for Mommy, Allison, and one last pinch for him in the morning.  I know I will need it.  After drop off, I may go down to the library for 'Tears and Cheers' if I can handle it.

Allison started at her new school last week.  I didn't want Jackson and Allison both starting new schools on the same day.  The first day was perfect.  I thought to myself...so this is how transitions are 'supposed to' work.  She had visited the school twice before and walked right on in with a "this way mommy."  Now, it's different.  Allison has to be peeled from my legs saying "I don't want you to go to work.  I want to go to my old school.  I don't have friends.  I don't like my new school."  Rip my heart out and stomp on it.  I never thought I would think...I wish she didn't have the words to tell me that.  Mimi gets the joyous job of taking her tomorrow.  Oh, I hope it is a better day.  Come on jitter glitter!

We will miss our TSA family.  Graduation was emotional.  We had another jump party over the weekend and spent Saturday evening at the school's annual tennis fundraiser.  It was so fun!  Spirits of all kind were flowing and it felt like a grand send off for those of us that are leaving. 

I hope Jackson finds some friends like he had at TSA and that Allison can be that friend.

to a jitter free day,

Stacy

For some of us, it's springtime, thoughts of schools out for summer, and planning time for summer vacations.  Others of us may have those thoughts after the ARD and IEP is official.  We have only been through the ARD process once when Jackson was first diagnosed.  We knew nothing.  I don't really know that we will know much more this go around, but I am doing my best to prepare.  I have attended many workshops, absorbed the lingo, and have read a book or two or three or seven.  I am having Jackson's team complete assessments and am meeting with friends who are intimate with the process.  I am doing what I can to prepare.  We don't have a date set yet for the ARD and I don't have a clue where Jackson will be next year.  I talk daily with Jackson about being a big kid and what it will be like going to kindergarten.  He doesn't seem anxious about my conversations so maybe some of it is sinking in.  This doesn't speak to my anxiety level.  The special ed higher ups in my school district have said the transition is harder on the parents than the kids.  The final verdict is still out, but for now I know this is true.

Jackson fits in where he is.  He has friends that like him and teachers that adore him.  I hate to see him leave an environment that he thrives in.  At times, he thinks about his friends and talks about them when they are not present.  When he saw them this weekend, he hugged them and gave them high fives.  He stayed with one buddy on the go-carts, on the golf course, and while playing the indoor games.  One more time, he has a friend. 

Tonight he reminded me about them.

The kids had their Easter party today at school.  I so wanted to be there for them and with them but couldn't.  Mimi subbed for me and had a wonderful time.  I have seen some great pictures from the party and hope to share them soon. 

I was helping Allison with the potty this morning and explaining to her again that I wouldn't be at the party because of my work.  She was okay with it.  She was mostly concerned with whether the Easter bunny would have painted toenails.

I cracked up.

I really haven't thought much about what today would feel like.  I dressed this morning and put on my autism pin and made my way to the dentist.  My dentist is wonderful and my hygienist is even more wonderful.  She knows of my children and always asks about Jackson.  She noticed that I'm wearing my hair shorter and that I shed a few pounds.  See what I mean...wonderful!  I gagged during the x-rays and had tight clinched fists during the cleaning.  I remembered my goal to have both kids to the dentist by Allison's third birthday.  I can do it. 

I made may way into the office.  I opened my in box and saw emails from co-workers about the meaning of today.  At lunch I perused some of my support boards and was overwhelmed by the media and video clips of today.  There was the same mention of the causes and cures for autism.  Do we know?  Is there science?  It was the stories of getting to the diagnosis that hit home the most.  I came across an old video of Jackson that was made to fund raise for his school.  It quickly brought back the painful memories or being on the pre-diagnosis side.  Not knowing and then knowing and not wanting to believe.  I, too, was the queen of denial.  I missed the signs.  Oh, the guilt.  The signs were there.  I didn't know better.  I try to do better now that I know.

We have come such a long way.  Jeff took the kids for Spring Break to see his brother in Austin.  They had a ball!  (Don't ever try to do Sea World during Spring Break.  Masses of people.)  We have recently been to the circus, Six Flags, regular trips to the grocery store, running errands, to the park, to the rec center to swim, to a college basketball game, and the list goes on.  We have been a family on the go.  Spontaneous.  It's lovely!  It was unheard of just a short time ago.  Jackson continues to progress and play with his sister.  Allison continues to light up our lives.  I social dance with her everyday.  It's lovely!

April is an action packed month full of autism events.  We will hit almost all of them.  To quote another one of my favorite autism moms, "Tolerance.  Acceptance.  Understanding.  Compassion.  Impossible without awareness."  It's time to change how we view a child's growth.

I leave you with this which is not directly related to autism, but it will warm your heart.  On this journey, we are working for a strong finish.

and my sweet ballerina...(turn up the volume to get the full effect of the tunes and heavy breathing)

 

Photo and video editing at www.OneTrueMedia.com

Are you aware?  Honestly, I hope that you are not. 

I do hope that every sonographer is acutely aware.  I may be alone in my feeling, but detection allows for education.  Education could somewhat prepare you for what lies ahead.  It is amazing the havoc that occurs when the diaphragm doesn't completely form.

Simply stated, "congenital" means "born with." The diaphragm is the breathing muscle that separates the chest cavity and the abdominal cavity. The diaphragm develops when the fetus is about two months old.  Congenital diaphragmatic hernia (CDH) is the absence of the diaphragm, or a hole in the diaphragm. This can occur on either the left or right side, but is most common on the left.  The contents of the abdomen, including the stomach, intestines, liver and spleen, may go through the hole and into the chest. The contents prevent the normal development of the lung (pulmonary hypoplasia) on that side, and may affect the growth of the other lung.  There is more to the story.

CDH occurs in about 1 in every 2,500 births.

Audrey, today is your day!  My kids are wearing turquoise (I don't have anything in my closet that would pass) and we are aware.  Today, we honor you Superstar, and all all of your warriors and angels.

Love you!

Is something in the air?  Are you walking with a skip in your step?  The feeling of hope is here.  Hopefully, this feeling will permeate. 

At the same time, I feel like I am being swallowed.  My list of things to take care of includes...transitioning Jackson into the special education program at our public school and finding Allison a new home school.  Okay, I can stop right there.  ARD's, IEP's, touring schools and daycare facilities.  Yikes! 

Add to that a weight loss competition, a photoshop photography class, education myself on a parenting method, and implementing an additional autism treatment, and I'm done. 

Except when this

turns to this

AND INSURANCE DOES NOT PAY!

Our homeowners policy does not cover a slow or intermittent leak.  What if I took a sledgehammer to one of the pipes running to the shower?  We just might be in business.  Sudden and accidental leaks are covered.  Apparently, using a shower for its intended purpose will do some damage.  Insurance doesn't like that.

Oh yeah, I still have not seen a dime to cover Jackson's ABA treatment even though there are laws in place requiring it.

Okay, so, I'm back to finding that feeling of hope!

The holidays were wondrous, hectic, and stimulating.  Jackson opened his last Christmas present just yesterday.  The highlight of the holidays was our camping lite trip to Glenrose.  So much fun!

We are having a hard time getting back into the swing of things here.  I keep telling myself just one day. at. a. time.  Oh, the whining...

Since I don't have the energy to post or fear that it will be full of negative Nancy, I will leave you with this.  If you have a child OBSESSED with the computer and are battling finding new games,  thank our friendly neighborhood living magazine for the discovery of mostlymommies.

Oh the weather outside is frightful (20-30mph winds),
And sleeping in would be so delightful,
And since I've committed to run 13.1 miles,
Please let me finish! Let me finish! Let me finish!

I had lunch with a childhood friend before the holiday who also has a child on the spectrum.  We played soccer together in our elementary school years  and recently reconnected.  We talked about our upcoming plans for the holidays.  We discussed the need to go into most everything with a really low expectation.  When you do, it is hard to be disappointed. 

Our Thanksgiving holiday could not have been more perfect.

The drive down 35 to Austin was perfect.

Visiting with family was so much fun.

The food was good.  The Longhorns won and some of us even went to the game.

Wahoo was played and long time friends were seen.

I am thankful.  Its a good place to be.

We wrapped up the weekend with a visit to the Dinosaur exhibit and a birthday party for Pops.  We will celebrate until the cake is gone.

Next big event is the White Rock Half on December 14th.  Oh, will I ever need a prayer on that morning.