It's a really tough thing to have a diagnosis for your kids that, in a way, says, "Don't expect much."
I think it is a human thing we do...
prepare ourselves for the worst, just in case...
I mean, we don't want to get our hopes up so high and then be let down.
But we can't do that.
We have to have high hopes... (ha, the song just came into my head... here, listen...)
After my initial shock and freak out phase of feeling like life as I had "planned" was completely over with the diagnosis of Fragile X, I thought I had been very positive. I didn't want to hold our kids back from things and wanted them to try it all if they wanted to.
When they are young it is fairly easy to get over their failures and make an enormous "to do" of their successes... even if all you're celebrating may seem so insignificant to others.
When they get older we seem to expect less because of peer pressure, tougher subjects in school, and just the whole adventure growing up and maturing... what a doozie!
Brother came home a while ago with a homework assignment from school in his FOODS class. (Yes, he is in FOODS and he loves it!) I read over the worksheet and it was actually a challenge of sorts, it wasn't just a worksheet to be filled out but he was actually assigned to make a meal for the family and then put a picture of it on INSTAGRAM. He had filled it out at school that he wanted to make steak and potatoes.
Well, at first I was like, ummm.... he has Fragile X... I don't know if he can make dinner for the family without hurting himself, burning something, or licking his fingers and then serving up his dish... AND then, the hopeful mom in me said, "Why not?"
So, a little hesitant, we went to work.
|poking holes in the potatoes so they don't explode in the microwave|
|marinating the steak while the potatoes are cooking|
|seasoning with his favorite seasoning — Montreal Steak Seasoning (we by it in bulk at Costco... no joke.)|
|helping daddy get on more seasoning before the barbecue got fired up, he even turned the steaks with Marc's help|
|He set the table and everything! (Don't worry, we all got our own utensils)|
When your child/ren get a mental impairment diagnosis, you worry that the only time they are going to get laughs is when they are being laughed at and you don't think too hard about whether or not they will have a sense of humor to make others laugh with them.
And then they start to have their own personality and take on the funnies in life. Brother loves to make this puppy dog face to try to get what he wants... sometimes it works.
When your child gets the diagnosis of FXS you don't even think far ahead enough of what responsibilities they will be able to take on, rather you think of all the extra responsibilities you will have in caring for them 24/7.
Then, one day, you have some awesome freinds who decide to let our specially challenged son have the opportunity to be responsible by taking care of their dogs while they were out for the weekend.
It was then that I decided he could take on a big responsibility like having a dog... He's been wanting one for 10 years solid. We have always felt we couldn't handle a new dog and 3 children with special needs so we continued to say "no" when he or Sister begged for a puppy.
But for the last several months I have felt strongly about getting a dog for the kids. But, how could I take on the responsibility of a dog and all the other things I do? So I prayed often that I would be able to find the perfect dog for our family: one that would already be house trained, playful but willing to sit and be held and cuddled, small, non-shedding, doesn't bark (a lot), smart and easy to teach, and would be a therapy to our kids. Not much. Just the perfect dog...
Especially if I knew I was going to be taking care of it and the kids!
Then after seeing Brother take care of these two dogs for a day I just knew he could do it, with a little help.
A few weeks after his dog sitting experience I saw that one of my really good friends was needing to get rid of her dog because of her work schedule.
I had a good feeling about it, so without talking to Marc or anything I just decided to have him come on a week trial to see if it would work out.
It took about 2 days for me to realize that he was exactly what I had been asking Heavenly Father to bless us with.
|He's a Snau Tzu, a cross between a Shnauzer and a Shi Tzu.|
|He has an underbite... hee hee!|
|We wear him out everyday|
|He sleeps on my lap while I work.|
Everyone loves him.
But, it is because of Brother's ability to take care of him that we are able to keep him. Pretty amazing when, in the first place, I was worried about having to do it all myself.
Brother continues to amaze me.
Little things like taking the arils out of a pomegranate when his fine motor skills struggle so much.
Working on getting himself ready for bed without help.
Being able to tell me when he needs/wants his hair cut because he decided he wants a new style.
I don't have any pictures of one of the greatest things he has accomplished and that is being in the advanced choir, Bravos, at his Junior High School!
We went to his first concert and I wanted to cry with pride, happiness and a little bit of embarrassment that I was worried he would never be able to do something like that.
He sang EVERY word on tune with emotion and excitement! He was amazing!
I couldn't be prouder!
Then, a few days ago, I was told by a friend of his that someone in his choir class said something to the effect of, "Does he even sing? I think he just holds [our choir] back."
When his friend told me this I tried not to cry. I didn't want her to know how much those words stung.
This person in his choir class, one of his peers, sees what I saw when Brother first got his diagnosis of Fragile X, "He can't do as good as others because he has a mental disability."
Oh, how wrong I was.
And, sweetheart (the person in his class who thinks less of him), sweet, sweet girl (I say that so I don't call her the nasty names that I want to), my son may have a brain that doesn't help him understand all the things you do, but his heart, right now, knows more that your heart is letting in. I hope, sweet girl, that you, one day, have a big heart full of love and understanding, and I do hope that it isn't learned through your stupidity, but rather through your acceptance and kindness to all types of people in your life.
Does Brother sing?
You bet he does!
Does he hold you back?
Only you can do that to yourself.
I hope you'll see my son for who he really is someday.