Changed Perspective

I remember in high school some of my close friends worked with the special needs kids in the school. I always respected them a lot for that but knew I couldn't do it. I always felt uncomfortable around those with special needs. It was always awkward for me.

Maybe that's why Heavenly Father sent one of those special spirits to me.

Now I can learn first hand how they are to be treated.

I'm not saying I'm smooth, cool, and confident around others that are different, but I do understand.

If there is every a child with autism, down syndrome, etc. that approaches me or that is around me I make it a point to not be afraid, to be understanding, and to talk to them like everyone else.

Now I understand that with each interaction there is a parent who is happy inside. Just like I will be happy if my son has friends, is accepted, etc. Just like I will be happy if a high school team lets him be on the football team, if a close friend takes him along for a triathlon, etc. (Not saying I can't be happy now:)

You hear lots of those miracle stories and now I my hope for the future is something similar.

All I know is that there is no person that is greater than another. We are not greater over children, people with special needs, others with more obvious sin-we are all spirit children of our Heavenly Father.

Everyone with special needs-they are there. They are in there. There is a wonderful spirit in them. 

What a valiant spirit that would choose to forego all the wonderful things to enjoy in this life to remind us that the point of life is not to see all the 7 wonders of the world in travel, to climb the social or business ladders, but simply to gain a body, to live, to love.

As we come upon Easter and the celebration of the glorious resurrection of Christ and his love for us, I cannot separate the wonderful thought of my little Isaac, of all with special needs and disabilities (which in one way or another includes all of us) will be perfect in mind and body. I can't wait to meet him, my cousin, my nephew, my nieces all as their full selves, stripped away from the imperfection. An imperfection here that is only making me more perfect for the life to come.

Because of Him we will be made whole. My little Isaac.

Let's Get Personal

As parent of a child with Fragile X I have to realize that I am a Carrier. This means more than you might think.

Here are some things I have to worry about:

-Depression

-Anxiety

-Pregnancy/Child options

-Premature Ovarian Insufficiency (FXPOI)

-Tremor Ataxia Syndrome (FXTAS)

-ETC!!

I have found that being more open is best, so although I don't want to get too personal! You are all my friends, right!!!:)

In  addition to thyroid problems, I have been struggling for a long time with anxiety and depression, which has recently reached its peak. I made the difficult decision to go to my doctor for help. Back in December a doctor told me that if things didn't change (heart racing so bad it shakes my body, shaking hands, etc.) then I need to be on Prozac or go to counselling. Needless to say, that was the worst visit ever.

So this last time I made Jeremy come with me and we went to Dr. Hyatt. He is my friend's Dad, so I trust him and feel more comfortable going to him. I cried the whole time. I mean, this isn't me! I'm happy! I don't need medication! I hate medication!

Okay, I'm on medication. Prozac.

But let me tell you! It has been a blessing. My family life, personal life, marriage, motherhood have changed for the better. In fact, one of the biggest reasons I took myself into the doctor for help is so that my daughter could have a better mother. She deserves a mom that is happy, kind, not ornery all the time, less anxious, etc. so that I can teach her more by example.
We'll see how the counselling part goes.

Okay, enough of that.

Next...

Everyone was wondering if I was pregnant when we got the van and bunkbeds...

I wish I was...

It's really hard as a carrier of a genetic syndrome to have faith enough to have children. Since having a child with Fragile X and truly understanding just what we are doing....it has been harder to be faithful.

But I want another child. SO bad. 

In vetro fertilization?

Adoption?

Another child of my own with the possibility of FXS?
No more children.

SO this is where I am. Where my family is right now with FXS. IF you wanted to know:)

Knock, knock!

As you know, we have been focusing on Isaac's communication, both receptive and output. He hasn't really said many legit words. I wonder sometimes if he knows that "Mama" is me or "Dada" is Daddy.
I haven't had much success with sign language or the speech button. I just don't think he understands why these things connect with what he wants.
The next thing I want to try are PECS. These are pictures he will use to tell me what he wants. I will also do this for routines.

SO...the big news is....drum roll please....

As we were playing yesterday, he was banking on the kids table with his fists, as he often does, and I randomly said "knock-knock!" and knocked on the table, too. He looked at me and thought about it and then I said it again. All of a sudden he said it! Okay, so it wasn't KNOCK KNOCK. It was more like Dot dot. But we did it over and over and I know he understood. I liked to watch him think about it and try to do the "n" sound.

The best part was later after we did it several times at the door. He was riding on the rocking horse, knocked on its head and said, "dot dot." I clapped and said "Yay!" Then he turned to the wall and knocked and said, "dot dot." (or however he says it:) I am so proud!!!!!!!!!!

Big break through. Things like this give me HOPE!!!

Who knew knock knock would do it?

We are also working on walking on uneven ground, up hills, and down slopes. It's going well! He is also attempting stairs whenever he can, especially when it means he can go to nursery, which he went to all by himself the whole time with a few breaks last Sunday.

Spoon It Up! And Buttons

Guess who used a spoon today!!!

ME!

Okay, just kidding.

Isaac! Pshh, who'd ya think?

It was fun to watch. He got about as much on the spoon as he did on his hand that was scooping it. But I'm SO proud of him! Hopefully we can keep this up. Sometimes he does things one day and never again. I think this one will stick if I keep working with him.

Also, his speech therapist offered an alternative language option to sign language. It is a speech button. I record my voice saying something like, "more," and then he pushes the button when he wants more. He hasn't really taken to it much yet...about as much as the sign language.

However, he is definitely improving on his babbling. He has so many more sounds and fluctuation. I have high hopes. I think he will be talking by...three. :) I try to talk to him all the time. I know I was better with Millie because I was less busy!

Doing well over here!