Re: Soccer Stress/Sara

[Guest guest]

Sara,

Thank you so much for your input. You are so right about the other parents. I

have begged them (the 12 or so other families for the last couple of seasons to

step up and help advocate. To write letters to our local AYSO board in support.

To write to the local parks and recreation. They do nothing but stare at me like

I'm crazy and sit back and complain, not only about the same situation I am

frustrated about, but about my expression of that frustration as well with the

very people in our AYSO district that can fix this ongoing problem as well.

That's so helpful...

Seems to me is that other parents and coaches are more focused on staying on the

good sides of the people who can make a permanent change to the situation than

they are sensitive to their own children's sensory needs.

I think a lot of our parents themselves are not educated...can't imagine never

trying to understand my child's environment from their perspective like what you

see in the link below...that breaks my heart.

Now add a COMPRESSOR and a bouncy house or two in the same small park...one of

my older girls with autism kept saying " I don't know what's wrong Coach, but I

just can't play today, and kept crying in frustration with herself-when it is

NOT something wrong with her but with the insensitive people in our region who

by their lack of respect for her needs and those of our other players breaks my

heart for her. 

(The parent liason at 's school said to me last week that my heartbreak

comes from a level of passion which they don't often see-but she wishes that

more parents were more like me...that conversation helped...wish I could lose

that " gift " as she called it at this point though...)

It also finally occurred to me earlier today that bottom line is though, even

though I am the program administrator on paper, I am still a paying customer

like any of these other parents and thus Aubrey and the other kids with special

needs are paying for at the very least-the right to have a safe and appropriate

place to play.

Regarding , she is having some re-growth success with Rogaine, Biotin,

hormones to mute the male androgens. There are no patches yet. She pulls her

hair back to cover the obviously thinning parts. We bought hair wefts several

months ago to clip in if it gets bad enough. She is a super-hero to me.

Regarding 's school VP-she goes to a private Christian school on a full

scholarship. Thankfully, that administrator is no longer her VP as she has moved

to another one...and btw his comment regarding reading Job was at the end of the

meeting I had with him requested accomodations...As is a junior at this

point, we are trying to tough that one out for post-secondary opportunities that

might never come to her otherwise...long story there...

I think for me, the heart of it is that TYPICAL SOCCER PLAYERS would never go

through this lack of respect, compassion and empathy. I am going to have a good

face-to-face/heart-to-heart with our new regional VIP commissioner sometime

today and get this monkey off my back once and for all.

For those of you who have family, and true friends who " get it " I say to you

count your infinite blessings as without my listmates I would be one lonely old

lady...

Desi

________________________________

To:

Sent: Monday, October 17, 2011 5:51 AM

Subject: Re: Soccer Stress

 

Desi: Wirth all the heart felt love I can muster - may I say ato you -

take a break and give yourself one!

How about a season of time where you think and concentrate on YOU and

yours. If the other kids want to play soccer, let their parents step up and

talk about the sensory issues. Why not use Aubrey's behavior people to work

on 1:1 skills and decreasing her sensory overload?

Why not get a funky haircut or wig - which every she needs and work

on reducing her stress. BTW _ that VP at school was totally out of line.

Religion in school?? Advocating reading Joab instead of providing

service?? Really? I think you might want to work on chewing his butt up

one side and spit it out the other, while calling for an accommodation

meeting for .

Strep alone can cause hair loss.

Big hug.

On Mon, Oct 17, 2011 at 2:58 AM, Desi McKenzie wrote:

> **

>

>

> Aloha Gang,

>

> Just had to write the 'ohana (remember Lilo and Stitch movie-'ohana means

> family!) about our soccer situation recently...

>

> I am mom to Aubrey 13, pddnos, down syndrome and mildy hearing

> impaired...Five years ago, since Aubrey's older sister loved playing soccer,

> she and I started an AYSO VIP Soccer league along with Aubrey's godmother

> our here in our community. We asked 's coach at the time to come out

> and support our efforts. It has gone rather smoothly for four years as I

> have been on the front line administrating the program advocating fiercely

> with our board for our players.

>

> This past year has been a rough one for our family. Aubrey's sister

> 16, started losing her hair (being called a retard in school since sixth

> grade hasn't help much-school VP (a weekend pastor) told me to read Book of

> Job 3 times and if we still felt we had a hard life call him again), had two

> concussions (soccer-no longer plays), has had two recent bouts with strep

> (have had a running, barking, howling dog above us since the beginning of

> the year so none of us could sleep (renters finally got evicted)

> ...resulting in five hospitalizations, short albeit, but stressful

> nonetheless...I could go on and on...as we haven't got to Aubrey's advocacy

> in middle school yet...

>

> Thus, this soccer season I decided to back off and let the two assistant

> coaches do their thing so that I could focus on my single parent family.

>

> During our Fall season last year, at least 5 out of the eight practice/game

> days found us having to share the park with large birthday parties. Large

> groups of people milling around, large compressors for large bouncy houses

> equals a whole new level of noise and a whole new challenge with our

> players' behaviors especially with those who are diagnosed with autism.

>

> After advocating last year with our Regional Coordinator regarding how this

> dual park permitting situation affects our player's sensory challenges we

> were promised that the park would no longer be permitted to anyone else.

> Unfortunately, it seems that the assistant coaches didn't follow through

> with the permitting process this year and this afternoon we had a huge party

> right in the middle of our field.

>

> So of course, Aubrey, who has been doing really well (keeping her hands to

> herself, not pushing or running into other kids,with behavioral intervention

> from the DOE behavioralist-we got DOE support last year when Aubrey sped off

> across the field and I couldn't stop her and she jumped into a bouncy house

> there and pushed down all the other kids jumping in there and even punched a

> little girl who was jumping in front of her) for weeks until

> today...Aubrey jumps out of the car, gets slammed with the already loud

> noise of the compressor and starts freaking out running and then of course

> sees the bouncy house where our field usually is and starts kicking and

> screaming at me to run and get into it...all the while the other 12 special

> needs parents are staring...Nothing like feeling judged by OTHER special

> needs parents...

>

> Of course, I have had it and get super upset asking how this could be

> happening yet again when we were promised it wouldn't...

>

> With essentially no respite for the past three months I really just wanted

> to take my daughter home at that point because I was too angry and just did

> not have the energy to deal with it all...I knew they could handle it

> without me as Aubrey's missed the past two weeks because of her sister's

> illness, not to mention that if we send Aubrey's DOE support people home

> that jeopardizes the service hours if not utilized...so I had no choice but

> to stick it out.

>

> So as expected, after the event was over, I get chewed out from the

> assistant coach for getting upset about the double permitting problem

> rearing its ugly head in this new season yet again. She felt it was my

> attitude that set Aubrey off (I was in a great place this morning before I

> got there!) and also told me that my attitude wasn't fair to the other 12

> kids we needed to service. That my attitude wasn't fair because she was

> doing this to support Aubrey and our family...She told me that my obsession

> with this issue wasn't helping anyone else there.

> This assistant coach who undeniably has a great heart-was oblivious to the

> other three kids with autism who had been crying for most of the practice

> and unable to participate as they usually do and how their parents were also

> feeling...

>

> It's been almost five years now and I still can't get this coach (who

> coaches mainstream U12 girls and VIP but also represents us at our AYSO

> Board Mtgs since I can't bring Aubrey to them) to understand the heightened

> sensory needs of most of our players, the need for a visual schedule (if I'm

> not there it doesn't happen), the need for strict routine...and even though

> they're mostly wonderful, generous friends at this point I feel they still

> don't get it...my heart is breaking as I feel I have failed to advocate

> successfully for not only my own child but for the others on our field...and

> yet this program would not exist without these other coaches, too.

>

> I have never ever seen a party going on at the same field where typical

> children are playing soccer...

>

> I am at the point where I am so done with this, but Aubrey loves to play

> soccer and is really good at it. I don't want my continued frustration and

> ultimate heartbreak with this whole situation to affect her participation.

>

> How do others of you handle it when people (friends, fellow parents,

> family) who are so close to you (one would hope would be able to see the

> inordinate amount of stress we have and the level of difficulty we deal with

> on a day to day basis) expect you to react appropriately during

> extraordinarily challenging moments with our children?

> Though I strive to the best parent I can be, I sure will never be perfect

> with our circumstances...

>

> Kind insights appreciated...I am so conflicted.

>

> Desi

>

>