Recalling things...(Journal#80)

I can easily recall the first feelings I had that Sam was possibly autistic. I can easily recall the first diagnosis, the second, and third...all to confirm that Sam had autism. Watching Oprah yesterday, who did her first show on autism only a few months ago, and followed up already again with Tuesday's episode, made me recall some of those feelings.

Seeing Jenny McCarthy on Oprah yesterday was nice, because it helps get more awareness out there on autism, and helps people understand our kiddos. What was harder for me, was her constant word use of "getting my son back", or that he is in "recovery". I guess for me personally, I have never felt the need to get Sam back, or to cure and recover him. I feel that Brent and I have always accepted Sam for who he is and have worked with him to help him function at times when it may be hard for him. Yes we have had him in intense therapy and programs and speech and OT and tri-monthly medical assessments to monitor his medications. I consider these methods to be tools to help him function in life better, but not change who he is. If you have poor eyesight, you help your eyes by getting glasses. We are just helping Sam along the way.

I guess what I am trying to say, is that we only know Sam as he is. How God blessed him to us. We know nothing different, nor do we want anything different.

Sam has a real hard time with word recall. Some of his worst metldowns occur because he can't recall or remember the simplest words. The other day, we had a 45 minute meltdown because he tried so hard to remember the word cup, and couldn't. And the problem arises when I give him his word choices, and I don't choose the right word he has fixed in his head when he hears it. Here is how it went:

As Sam stood by the refrigerator, he swayed back and forth saying over and over "I need....I need... I need"

I tried to give him some good wait time to recall on his own first, but it is kind of like a balancing act, because if you wait too long before giving him a couple of choices, the meltdown starts, and if you give him some word choices too early, you will have a meltdown because he wanted to think of the word on his own first.

I chose to wait this one out.

"MOM...I need...I need...I need.....oooooohhhhhhhhh" as he then falls to the kitchen floor on his tummy and pounds his fists onto the floor.

I then drop to the floor at his level and look at his face and say "Sam...use your words, not your scream. Mom will help. Do you need food or drink?"

He quickly screams. "drint".

"So Sam, say ...I need drink".

He then rolled over to his back kicking and screaming saying, "no drint".

I am quickly giving some drink choices to see if those are the words he was trying to recall. Of course, to no avail, were any of them right.

Long story short. All along he was trying to say, "I need cup". He was going to get his own water. He just needed a cup.

It just really makes me sad sometimes, when he can't recall simple words like that, and when I see the frustration in his eyes in trying to recall the correct words or phrases. Yes all of those things can make me sad for him, but it never makes me want to change who he is with his autism. I guess you could say I would never "recall" my boy and send him back! :)

A Twist of Faith
Sam and I have been working on some of his vocabulary cards the last few weeks with many of them containing animals. We started this silly game, where Sam says, "What if I was a snate (snake) mom?" and I always follow up with "I would still love you the same Sam."

Well the other day he laughed and he followed with, "Mom, what if I was mouse?" as he knows I HATE them. I gave him the response that I thought he wanted.

I faked a scream, "ooooooo Sam, I would run around the house screaming." Sam very quickly put me back in my place. "MOM!" he said, "You ted you dove me anyway!" (you said you'd love me anyway).

Now tell me he can't recall things! Thank goodness he remembered I will always love him no matter what, and my heart knows that he also knows that God does the same for him.

But Zion said, "The Lord has forsaken me, my Lord has forgotten me." Can a woman forget her nursing child, and show no compassion for the child of her womb? Even these may forget you, yet I will not forget you. See, I have inscribed you on the palms of my hands…. (Isaiah 49:14-16)

On the outside looking in...(Journal#79)

I want to see my baby in school. Such a weird feeling to have your youngest start kindergarten. Such an even weirder, uneasy, waiting to see feeling... to have your youngest start kindergarten, be in special education, and oh yah, be autistic.

While we have been trying so hard to have Sam be as mainstreamed in life and school as possible, there are still so many times we feel like we are outcasts or on the outside looking in. The first day of school was a great example. Our district decides if your child has morning or afternoon kindergarten, unless they have an IEP that would state differently. Of which Sam's does. Sam is in private speech therapy twice a week for two hours each time through a local hospital. After almost 3 years of one-on-one speech with an SLP, Sam is now in a program focussing on social/converasational speech skills with 4 other children and 2 SLP's. This program meets in the mornings. Brent and I felt it important to push for afternoon kindergarten, as we didn't want to pull Sam from this program because it aligned so well with his IEP language goals. So...we made the choice to have PM kindergarten.

We did not know that our whole neighborhood is AM kindergarten because they are walkers and walkers always get AM.

So Tuesday was the first day of school. I am so excited and have both boys outside to get our pictures by the same bush I have always taken our oldest's picture by since he started school. As we are taking the first day pics, the neighborhood mob of parents and children go walking by to school. While we were invited to partake, we did not, because Sam didn't need to go until PM, and Zach was getting a personal escort and ride by Brent. So once again, our attempt of getting Sam hooked up more with neighborhood friends seemed lost. Playdates are already being arranged for afternoons, when everyone is home from school (but Sam won't be). Pictures were being taken on the corner of "the group" that now walks together to school each morning. As hard as we try to keep up with typical friends and neighbors, it seems like we tend to keep out better. I am still not going to give up, but sometimes I just want to say "geesh, can it ever be in our favor".

I have intentionally kept some barriers up with neighbors, because some of the times we have had with them feels like such a struggle when I have to explain some of the things Sam does constantly. It is hard when they don't really understand. In most part, I can say it is my fault that we feel like we are outcasts. I know I could explain to them and try harder, but just don't always want to, nor have the energy to.

The first day of school came and went so fast, it is already almost Friday. My little boy is growing up fast. I wish he would tell us more of what he does at school. I will be touching base with his teacher tomorrow. I just want to know if he talks, or attempts to interact with peers. I just want to know, I don't want to be on the outside. I want the inside scoop. I don't want to always be on the outside of everything looking in.

A Twist of Faith
Sometimes life, people and situations can make you feel like you are an outcast. That in fact you are on the outside looking in. In those moments in time, we can be thankful that while it feels like we are on the outside looking in, that we always have the option of looking up. Of looking up to Him who provided for us. To that Jesus on the cross that saved us all.

I lift up my eyes to the hills- Where does my help come from?
My help comes from the LORD, the Maker of heaven and earth.
He will not let your foot slip -
He who watches over you will not slumber;
Indeed, he who watches over Israel will neither slumber nor sleep.
The LORD watches over you
The LORD is your shade at your right hand;
The sun will not harm you by day, nor the moon by night.
The LORD will keep you from all harm -
He will watch over your life;
The LORD will watch over your coming and going
Both now and forevermore.
Psalm 121