Ever Wondered?

We were at the zoo today. It was hot, but the boys had a great time as usual.

We rode the new sky ride and the zoo worker running the ride was less than patient with Jax (which is unusual for the zoo). Well, it got me thinking, for the first time really: When other people see Jackson what do they see?

Do they see the innocence in his deep blue eyes?
Do they see contentment on his face?
Do they see they see the victory he is just by being in a public place?
Do they see the purity of his heart?
Do they see the struggle he faces?

Probably not. My guess is they see a "big kid" acting little. They see a rude young man who doesn't 'listen'. They sometimes look curious, or appalled or worse judgemental.

Just my thought of the day....

A Glimpse

For my Beach girls from my blog:

I think of that Nicholas Cage movie "family man" where he gets a "glimpse" into another life. I can relate this to my own life and the moments I treasure. There are these moments for me when I get a glimpse of normalcy. A time when autism ceases to exsist. Like a time warp. These moments are priceless and sometimes come at me like a curveball.

Well, today I had a couple of them. Which for me was like hitting the lottery twice in one day. My first glimpse: Jackson return kicks a ball down field during a soccer game. Does it like he's done it a hundred times before, but he's never done it before. At this, I am elated! I jump and yell and I think he's unsure of what he did that was so meaningful.
Except that we've once again gone through the litany prior to entering the game:
You need to kick the ball Jax, what are you going to do?
Kick the ball.
What will you do?
kick the ball
What will you kick?
the ball
Then, the countless prompts: kick the ball Jax
You have to run
Go get the ball Jax
Get Tommy
Follow Molly
In that moment, that glimpse, all these fade into the background. It's like life in slow motion as my baby defends the ball. It means so much to me; yet I wonder, does it mean anything to him?

Ok, so I'm content with the glimpse, I won't ponder the complexities of it.

Next, we're at the amusement park. He loves it here and so do we. When we're here as a family, we feel accepted. We feel validated. We feel like we belong [Lord, that in itself is priceless]. It's our first trip of the season and Jackson flits from one ride to the next seemingly on a mission to ride each ride he's missed all winter.

Later in the day, when DH and I are both a suffereing motion sickness from all the rides we let both boys ride together on the "flying scooters". [Dh is reluctant, unsure it's safe. I'm certain they'll be fine]. Jax too, is a bit unsure but decides he'll ride with Cal. So this glimpse [tears here] lasts 2 minutes as I watch my two boys filled with joy fly through the air laughing, giggling, squealing together. There is nothing else in the world for me in those minutes. Just a heart growing warmer, a love growing deeper. Just a glimpse of what might have been between two brothers....
I can't help but think of what is between these brothers. For Jackson, it's unconditional love. For Callahan, it's curious love.

So, today I got two glimpses. I love them. Maybe I shouldn't admit that.

Holidays, vacations, routine changes

Sigh, Besides illness, routine changes are the most difficult part (for me), of being a Mommy.

You must plan and re- plan, my DS cant be allowed to get 'bored', yet the planning must be thought out, is VERY subject to change, and must be enough, but not too much.

My son no longer has full blown anxiety attacks at the very SIGHT of a crowd, however, his attention span is short. You could drive him for 3 hours, pay a hundred bucks admission, and he is 'happy' to stay for 10 minutes, then it is over....Irregardless of Yogi's belief that "It ain't over till its over".... sometimes this isn't true with the Pooh... We must remember that Yogi also said "Its Deja Vu all over again", and I can sense the mood changing and try to avert a full blown melt down...all the while trying to balance exposing DS to new and exciting happenings, and not allowing myself to isolate and limit him to the things that are tried and true...

Anyone else have anything to share?

It can be suggestions, but this morning I could really go for some companionship, here on the beach. Just bury my toes in the warm sand, sip my raspberry chocolate coffee, and 'share' the funny times, the scary times, what has worked, what failed miserably, the fear of the future, the excitement of seeing the kids progress, and the prospect of a L - O - N - G summer.

PS: Happy Memorial Day, to all those who have served and are serving.

Slowly learning to communicate

My son has very few words, only a few signs, and doesnt use them consistently, rarely will he even attempt to use cue cards. This makes it very difficult for him to be able to get his wants and needs across to the rest of us, usually communnication takes the the form of behaviors. I have no doubt that many or his behaviors are seen by him as the only way to get through to us and it makes me very sad.

Slowly, ever so slowly he is learning that he can use other methods and modes to get his point across. I try very hard to show my son the POWER of words, gestures, cue cards and signs. This has not always been troublefree and my parenting skills are a work in progress, as I strive to help my incredible child learn his way. Speechie, OT and I have worked for months to get DS to eat gummy candy, he has many sensory issues and oral motor control concerns. We are so proud and pleased that he can now use these muscles and overcome his SPD to chew and enjoy the candy. Now, we face the concern of setting limits on the candy, while still allowing him to see that he has the POWER to communicate without behaviors. Hence when he signs for more candy, I dont want to refuse him, but now instead of an entire pack, he can only have one piece. Perfect? Hardly, but I am not a perfect mommy.

On super duper bath days, I always give my son plenty of advance notice about what all will need to be done and how we will do it as quickly as possible, how proud I am of him and how brave he is. (Super duper bath days are days when we must shampoo his hair and trim his nails). As I was running the bath water and getting everything together, I was singing to him abouthow he would soon be fresh and clean, etc....He came running up to me and handed me something, as I looked down to see what his was, I had to laugh. He had handed me one of his visual cue cards, and it was the sign for FINISHED, he took me to the tub and again handed me the card for FINSIHED.....

Of course, we had a talk, or rather I talked to him, and I explained that while I was very proud of him for being able to tell me how he felt, we really were not finished and he did have to get a bath, shampoo and his nails trimmed. We sat the card on the sink and after we were all done and he was dressed, I told him how nice he looked, how clean and fresh he smelled and I handed him the FINISHED card. We then went to the kitchen and he got an ENTIRE package of Scooby Doo gummy candy.

I am very proud of my son, I dont know if I could do nearly as well as he does, given the obstacles he faces. He is a brave and wonderful human being.

How can being told NO, be so sweet.

My beautiful, sweet, kind son is 6 years old. He is usually a very loving child, but he is a child and he can have difficulty not doing things he likes doing (what kid doesn't?). My son also has special copnsiderations. He has ASD, is functionaly non-verbal, and has many "behaviors of", associated with his ASD.

The other evening his father and I were fixing supper, I was at the sink making salad, DH was cleaning corn, we had some steak in the microwave, on defrost. My Pooh loves the microwave, or should I say, he loves to turn the microwave off and open and shut the door....He comes running in with this big mischevious grin on his face, turns the MW off, runs out, I turn it back on, he runs back in, turns it back off. I turn to him and say "Would you please, please stop turning this off?"....a second of silence and my son looks at me with this little boy grin, green eyes sparkling and says, clear as a bell "NO", throws backhis head and laughs out loud, takes back off out of the kitchen....His father and I stand there in stunned amazment...

My son, he is one of a kind....

No Sweeter Words Were Ever Spoken...

Every morning, I drive 3 of my 6 children to school. Erin, our 10 year old, insists on walking. She is a stickler for time.
I always walk our 6 year old Kiernan to class first. I usually get a peck on the face and a shove out the door. On Monday, I said my usual "Goodbye Kiernan"....
Out of nowhere I get...Ba Bye Mama....WHAT?
His amazing teacher, Kelli Dominguez (who adores him, by the way) said, "What did he just say"?
I said, "just what you thought he said".

Of course, we are both thrilled and amazed.

I always knew Kiernan would start talking. He has a voice, but not words....
Well, he used to not have any words.

renewed hope....a great feeling to have

In the past several weeks we've had many changes....a new therapy was added and Matthew has begun to soar in all areas. I think back to a few months ago when I was feeling helpless and hopeless....it is not a feeling any of us want to experience, yet do at one time or another.

My message to others is to never give hope up completely! There will be times when you think that this is it...this is how its going to be forever. That your child has reached the point where they aren't progressing any further and you believe that they aren't going to progress any further. DONT allow yourself to wallow in this pit. Pick yourself up and start again. Try new things...try old things again...ask questions and research night and day if you must. Take a break and breathe (as a good friend always reminds me) and then get back to it.

This morning I watched as my ds ran up to his classmates and said "hey guys, what are you playing?" something he had never done or said before!

Imagine if I had given up............