Sunday, August 16, 2015

A Challenge

Faith has made amazing progress through her therapy at the ASSERT program at USU and through her time at the head start special needs preschool. As we are preparing for the start of a new school year I had been finding myself excited for what is to come and feeling hopeful.

Faith had an "end of year" celebration at ASSERT last week, which marks a 2 week break before the new school year begins. They made a slide show of all the kids with pictures of this last school year and this summer. Faith has begged to watch it daily since, eagerly shouting names of the kids she went to ASSERT with!

"Wook, Wook,  it's **insert names***" is heard with every. Single. Picture.

The therapy team had noted how far she had come this past year in playing social games and engaging other kids to play.

But then, you have days like today and your heart breaks and you are whipped back to the reality of how far we still have to go...

Today, my sweet twin nieces were given a name and a blessing. In the LDS Faith (Mormon) we don't believe in infant baptism. We believe babies are born without sin and we baptize our children later after they have reached the age of 8. Because of this, we mark the birth of a new child with a special priesthood blessing in church on Sunday in front of family, friends, and the ward (congregation) with whom we attend church in our sacrament.

After this meeting was held,  family and friends of my in laws left the rest of the regular block (we attend church for 3 hours on Sunday. We have sacrament, Sunday school,  and our priesthood/relief society meetings) to go to a park across the street from the church to further celebrate the event.

My girls, of course, ran to the toys. They were delighted to play with other kids. Phillie,  of course, being a charmer, had no trouble convincing others to play with her and joining their games. I watched Faith happily play with her and then decide she wanted to move on to something else.

She walked up to a group of girls playing on the merry go round. They probably spanned in ages from 5 to 7 or 8. She tried to join them and they immediately stopped the merry go round. They said to look out for the "baby"...  and my heart sunk.

I wasn't mad at these girls.  I understood immediately "why"... but I hurt for my sweet Faith. She was so confused why they wouldn't let her play. She shrugged it off quickly and went and sat on the swings, waiting and watching for anyone willing to join her.

She wasn't much younger than these girls. Cognitively,  she probably is on the same leveL as the youngest... but Autism and her speech delay have led to a HUGE communication gap.

I forget in all the strides we make that she still doesn't speak like an almost 4 year old girl. Of course they thought she was a "baby". She walked up, said "hi" and then proceeded to babble words and phrases they couldn't understand.

She has made improvement,  but her social sphere so far has only consisted of her sister and kids like her. It was like a shot to the heart to have to remember that at some point,  she will have to engage with kids that do not have the same struggles she does... and with that realization, the fear returned.

Fear of the questions. Fear of the unknown.

Will she be able to make friends in school?  Will the other kids be able to understand her once she starts kindergarten?  Will she date in high school?  Go to college?  Get married?


While I sat, surrounded once again by fears I had let myself forget...something happened.

My sweet nephew Max... a "tween"... a young man with a considerable age difference to Faith noticed her on those swings all by herself.  He walked over and sat next to her and started trying to show her how to swing... and when he realized she didn't get it, he got off his swing and pushed her. He helped her swing super high so she could gain momentum and then got on his swing next to her and started to swing with her. He talked to her...even though the conversation was painfully one sided... and he stayed with her until we had to leave to go home.

So this leaves me asking one thing:
As your kids go back to school this year, please encourage them to be the "Max" of their school or daycare. Please remember that there are mama's out there like me who have hearts breaking because they see how badly their child wants to be included and there are kids like Faith who are trying really hard to learn how to ask to be included but aren't quite there yet.

If there are more "Max"es in the world, mamas lIke me won't have to worry so much.

In the meantime,  I will do all I can to help my Faith learn and grow and be the best version of herself.  It has to be incredibly frustrating for her to know what she wants and not be able to express it...but I have faith that someday she will be able to. Please teach your kids to have patience with her and other kids like her until then.

Hugs and loves until next time, darlings.

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