Friday, June 16, 2017

To Mainstream or Not...

Freya graduated from her special beginnings preschool class and is on her way to kindergarten in the fall.  She will be attending the Waldorf charter school that her older sister goes to, and I am slightly terrified.  

Like so much of having a special needs child, the decision to mainstream or not is a very involved, difficult one.  Mainstreaming means that they attend class with their 'typically developing' peers.  Before having a special needs child I would have thought this sounded like great news, that the child was doing so well they could live their life enmeshed in 'normal' functioning society.  Now that I have a special needs child, one who does do quite well, I am feeling the full effect of that double-edged sword.

I am preparing to send my daughter to a school where the teachers have chosen to work with typically developing, normal functioning, status quo children, and already I miss her special beginnings teachers.  She hasn't even started school yet.  But her previous teachers have all chosen to work with kids like her, kids that take longer to process what you are asking them, or kids that need things explained with signs along with words, kids that need to see a chart of the order of events to handle transitions, kids that can't articulate words let alone sentences, kids that can't balance on one foot or even walk at all.  I already miss knowing that the person teaching my child has made the decision to give their time in this way, to these kids, and I am so grateful for them!

I'm not saying that her teachers at the new school won't be wonderful, compassionate and attentive, the ones I know are.  But do they really understand, I mean, really understand?  

I attended the 8th grade graduation of this school a few days ago and while us parents of 7th graders excitedly and nostalgically talked about next year, I thought of Freya and wondered if she would make it to 8th grade in this school.  Are they going to be able to deal with her and her potential issues?  When they sat through the transitional meeting did they really understand when I said that she HAS to have supervision around food, or when leaving the classroom.  They spoke as if eventually she would transition into being able to leave the classroom unsupervised, but I don't know that she will.  Statistically, with her diagnosis, she won't.

And what happens when they figure this out?  What happens when they realize that my sweet little 5 year-old charmer has a disorder known for its behavior problems, temper tantrums and manipulative behavior?  I'm not sure this sweet little hippie school can handle it.  And that breaks my heart and makes me feel like a shitty parent.  A part of me wishes she could stay in special beginnings for her entire school career, let's just call it what it is and accept what she needs.  But we've started this course and Freya is thrilled to go to her sissy's school.  And, ultimately and honestly, as terrifying as it is for me, I think it will be great for her. 

So I will keep reminding them the trash cans need to be emptied, I will tell Freya she can only play on the wood chipped part of the playground and not run with the older kids on the concrete, I will go on every field trip, and teach her at home what she can't pick up in class...and I will pray that she continues in life with as much grace, calm and friendliness as she does now.  

Tuesday, April 11, 2017

Shifting

We now have a door on the kitchen.  My daughter is 5 and a half.  I thought it would be later, when she was older, but the time is here.
I am thankful that the door has worked as a barrier not only to food on the counter or just barely empty cinnamon bottles, but also to a seemingly uncontrollable sneaking of food.
I've read the brochures, the articles on the National PWS site, posts on the PWS FB page, listened to doctors...all of it.  But still you cling onto the hope that your child will be different.  And I still have hope that she will be.  Each PWS phase she reaches I think, "Well, ok, she won't go through the next one, not so bad anyway.  She's on the less affected end of the spectrum."
And really she is.  I am grateful for that.  Freya never had a feeding tube, and while she didn't walk until after reaching 2 years old, she can now run and jump, not like her peers mind you, but she can, and does, and delights in all of her movements.  Her articulation is not the clearest and it is often a struggle to understand her, but she speaks in sentences and can usually make herself understood.  If not, she has a little sister who comes to her rescue.  She knows letters, numbers, shapes...all of the basics a kid her age should know.  She loves stories, dance parties and seeing friends.
But here is the thing, as grateful as I am that she can do all of these things, it does not mask the other characteristics, not to me.

The day we decided it was time for the kitchen door began with a red faced Freya having found an "empty" cinnamon bottle (Cosco size no less) in the recycling, getting a spoon and scraping out what she could.  All while we were blissfully asleep.  A little later, after having left the kitchen for just a few minutes, I came back to find that she had taken a pair of scissors to the bag of steel cut oats.  The slumped shoulders of shame accentuated the look of almost disbelief on her face, as if she had just not been able to stop herself, though she knew she should.  This seemed different, and far more alarming, than the few mornings before when she had eaten 4 bananas before we woke up.  I thought putting the fruit up high would be enough.

She cries for food sometimes, heartbreakingly so, even when I know she should not be hungry.  I come to pick her up from her class and, even if she is in the middle of an art project or a pirouette, the first thing she asks is if I got her a snack.  And won't stop asking until I tell her when she will eat again.
There are times now when she just seems sad, without explanation.  At these times all I can do is hold her and rub her back, telling her how much I love her, while tears stream down her face.  My daughter is different, and I think she knows this.

When we are in public and see someone in a wheel chair or walking with a cane, or someone with oxygen strapped to their nose...anything that makes them stand out to a 5 year old that always asks "what's that" and "why?", I take that opportunity to explain how everyone's body is different and some need extra help.  I now mention to her that her belly and brain will tell her she is hungry when she is not, and that she should not listen.

How do you explain to your child to not listen to something as instinctual as hunger?

Even as I write this I am remembering something I read years ago when we were first learning about this disorder.  The disadvantage of people on the less affected end of the spectrum is that they 'know' they have this disorder.  Depression is a common, and probably logical, reaction.

When I began this blog in the weeks after her diagnosis, it was to be a place to process the emotions of having a special needs child.  Also, it was to be a chance for my friends to read about my child and her diagnosis so they could know what was going on with us without me having to discuss the not so uplifting details at BBQ's and family dinners.
I mentioned to some friends recently the posts I had read on FB, the numerous laments of people having lost most of their friends as their child grew, the challenges being too much.  Now, I have amazing friends, friends who have always been supportive and loving, and of course they assured me that it would never happen to us. And I believe them.  That is how I am made, to have hope.  But a small part of me wonders in trepidation about our future; my family's, Freya's.

See, I've done the research and listened to countless PWS stories.  I know what we are up against.

Saturday, February 4, 2017

Small Release and Big Love

     Just when I think I have adjusted to the emotions of having a child with special needs, when the therapies and daily injections have become such a part of our life that I no longer lament over their need; something, some nugget of compassion from a stranger, watching a video on the advances of PWS medical research, or a sudden visceral realization of a side of PWS that until then was just a checkpoint in an informational brochure, will crash into me.  Then the tears come.
     They are no longer sobs.  No, I am past that.  But the grief is still a part of my life and I realize at these times that it always will be.

It comes when watching her try to interact with peers and not succeeding as well as her little sister.  Drying her tears because, while she may not understand what is happening, she feels the sadness of being left out, of not being able to communicate well enough for the attention of a young child, because her attempt at inclusion is at times taking the toy they are playing with, or simply making a loud, repetitive whining sound not appropriate for a 5 year old.  My attention is easily diverted when we are in a room of children because I am listening, waiting to intervene because my daughter does not always play well with others, though I know she desperately wants to.

It comes when she makes known her overwhelming sense of injustice if she thinks her younger sister is getting more food than her.

It came when, because of bureaucracy and the inability of a staff worker to get the right paperwork to the right people, she was without her growth hormone shot for two weeks.  Five days into what I can only assume was a hormonal roller coaster, I held her while she sobbed like no 5 year old ever should.

It came when, in a state of feeling overwhelmed and looking forward to when free time does not require a babysitter or organizing it with my husband, I had the shocking realization that this freedom may never exist for me. That we will likely not be able to leave her alone.

It comes when she tries to talk to a stranger, or they her; the pregnant pause of them trying to understand what she is saying.  My heart breaks when her Dad and I can't understand and we either look to her little sister for translation, or she simply gives up under our repeated attempts to figure it out.
 
It comes as I evaluate her body composition, wondering if her belly is a little more bloated, if her thighs are a little bigger, if now is the time we will have to exert total dominion over every bite she takes.

It comes if I think too deeply on the fact that she can sit for hours coloring meticulously with a black pen, the sometimes too methodical way in which she reads a stack of books, the instant irritation if  someone ruffles the mat under her plate of food.

These all pass through my thoughts and yet, life goes on.  I have learned to tuck these thoughts away. I let them pass through without speaking them or giving them much notice.  But at times they must come out.  At times I must acknowledge that they exist, that this life with Freya has challenges.

Where there are challenges, there is also the deepest love and the sweetest successes.

Sometimes we are able to laugh at our misunderstanding of her words, turning it into a silly game of random sentences and laughs.

I watched in delight as she charmed every Guatemalan grandmother on the streets of San Pedro with an 'hola' and a wave.

I am uplifted by the excitement and joy with which she approaches life.  I laugh joyfully at her dance moves and the faces of hilarity she makes to give others laughter.

I indulge in the moments when she has a story to tell, one sometimes difficult sentence after another.

I revel in the absolute love and ease it is to be around her, to sit and color with her at the table or walk quietly amongst the trees.

My heart grows every time I hear her say, whether to me, her Dad or her sisters, "I love you".

Those words I always understand.