I haven't blogged in a while.  Writing used to be my vice and running was a hobby, but now running is a vice and writing is that thing I used to do in my spare time.

Surely by now you have read the Disney GAC changes.  I'm not even weighing in on the changes until I see what the feedback has been from SN families once it rolls out Oct 9.

But because of the changes, a whirlwind of blogs and magazines and news outlets have run the story, and a FURY of responses have come in.  Think things are going well for the advancement and lives of people with SN or disabilities?  Think again.  There is still a deep rooted sense of discrimination for special needs (SN) and people who are disabled.  It's like so many people were thinking all along SN families are "entitled", and this Disney announcement was the perfect venue for them to voice their opinion. Is this really what people think? So many things are heartbreaking on a daily basis for SN families, but to know behind those silent faces staring at us are people who think we have a sense of entitlement? Ouch.

Here are some comments reminding SN families that even though they may want their child to have a MOMENT of normalcy and inclusion at the "Happiest Place on Earth", the reality is, they continue to be marginalized and viewed as Other (the following quotes are taken from the Parents FB page in response to the Disney changes.  For more appalling feedback, check This out or This): 

"I do feel there is a point to the 'if your child can't wait in line/be in a crowd, stand for long periods of time' argument , then maybe Disney isn't the right place for your family."

"I understand that children with special needs have just that- Special needs. But on the other hand, don't put them in a circumstance that would be any type if hardship on them."

Most negative comments came from people who don't have SN kids....because, you know, people who aren't in your situation totally understand your situation.  And let's not forget how adversely affected "typical" kids are when an organization makes their facility accessible to kids with SN or disabilities.  I mean, it takes some nerve as a parent of a SN kid to make a typical kid feel left out when they see a child in a wheelchair doing something that typical kid isn't doing...

"I'm not saying that disabled children are easy to handle taking care of but dang... If they just went in a different way and didn't cut in line then that's cool but how would I explain to my child that another child cut in line just because he/she's in a wheel chair....?"  
 
 And quite possibly the most disturbing one:
"My children are not diagnosed with any disability. BUT if I had my 4 and 3 year old with me do you really think it would be easy to stand in line that long with out them giving me a fit or tantrum? Ha! I wish...I know living with a disability might not be easy but nothing in life is. God gives you only what you can handle, that shouldn't mean just because your child is different than mine, as mine are different than yours, you should have a right of way if we were in line first. If the rolls were reversed and my child cut in front of a disabled child how would you feel? Exactly...no one child is more important than the other only difference is they may look different and do things differently but that is all children....even adults."

SN families are subjected to a ridiculous amount of scrutiny and judgement every single day. SN Parents spend their whole lives, day after day, justifying every single thing they need, want, or do for their child.  They have to justify, explain, and defend things to the school district, to the insurance company, to doctors, to therapists, to family.  And they have to justify, explain, and defend things to complete and total strangers. SN individuals and families are never "off limits" for public discussion (conducted by people who are not SN/disabled, and by parents who have "typical" children).  People stare, ask embarrassing questions, say hurtful things, and feel they have a right to weigh in on you or your SN child.  Last week at Wegmans, after 2.5+ hours in the store I told Emily she needed to put on her listening ears because we needed to get going.  As we started to walk away, a woman approached me, and in a very condescending tone told me I "needed to be more patient with my handicapped daughter".  Little did she know (since she was a stranger and it was none of her business) that we needed to get going so I could get home and cath her (since we cath while she lays down, and Emily is too long to use the changing table), so she didn't have an accident and so urine didn't reflux to her kidneys. 


I know a lot of moms (and dads!) who care for kids with various needs - I am a caregiver to a child who is disabled and has a medically complicated life. I also know that most caretakers are working tirelessly to make the world better and more accepting for their child.  We do physically challenging work, like carry 50+lb kids and their equipment.  We plan extra time in the morning to put on afo's.  We stay up much later at night to get that last cath in while their child is sleeping.  We research and visit places before hand to see if our child can access it.We plan errands around cathing and enema/ cecostomy/Mace requirements.  We watch our kids endure an immense amount of therapy and often miss "typical" kid activities.  We handle an enormous amount of bodily fluids and functions and tend to medications and medical procedures like nurses, and do it 24 hours a day 7 days a week 365 days a year.  

Yet you rarely see us sweat, or hear us ask for help.  We never show just how hard life can be.  We know you get farther with a smile and a brave face than with sadness and exhaustion showing.  So we put on a happy face for our children and the world all the time.  We put up with all the unsolicited opinions, the stares, the hurtful comments to our faces, the stupidity written by people who don't even have special needs kids, and we tolerate it.  If a SN individual or parent complains about the barrage of unsolicited opinions, questions, and advice bestowed to them every day, they are made to feel guilty.  We are told people are "well-meaning"  or that it is a "teachable" moment.  And maybe it's because we TOLERATE so much that we have done a disservice with what reality is like so often for individuals and family members. 

Perhaps this lack of insight into our lives has contributed to some of the sheer moronic beliefs held by some people out there, like people who think the Disney GAC is unfair to their own typical kids; people who believe Disney isn't the place for a child who is disabled; people who think SN families walk around with a sense of entitlement, expecting (and receiving!) oodles of free things and special short cuts.  It appears that while individuals and families are fighting for themselves or their children to have a place in the world, others perceive this as a greedy sense of entitlement.

So here it is: Yeah, all parents are burnt out.  Tired.  Stressed.  But parents with kids with disability or medical needs are probably feeling it ten fold. 

I love my kid.  I love her to death.  I would give her anything I could, do anything for her, just as any parent would.  But I would also give her my legs so she could walk.  I would give her my spine so she never has to have dethering spinal surgery.  I would give her my head and brain if it meant she would not have hydrocephalus, need a shunt, need brain surgery, or have to face shunt failures. I would give her my spinal nerves so she could have typical gross and fine motor skills.  So she could go to the bathroom. I would give her my cerebellum if that meant she would have better balance, no choking issues, and never have to face decompression surgery.  I would fight to the death for her spot in a world that tells her she doesn't belong. 

Often life is very isolating for individuals and parents of SN/disabled kids.  Among typical moms and kids I am always on the sidelines.  We don't just show up at the park and start playing with kids.  It is a whole process, seeking someone out who seems understanding, introducing Emily, explaining her equipment, and then staying by her side to help her access the non-accessible playground equipment.  Often I am unsuccessful.  Sometimes I want to scream "You can't catch what my daughter has!!!"  When I do manage to work my way in with other moms, I can't relate to their struggles, the things they worry about.  I often feel jealous....one person's troubles is another person's dream, right?  Listening to a mom complain that dance class is so long, or that toilet training is hard....I can't relate but I wish I could.  I grieve all over again.  There are no face-to-face support groups locally for SB.  Once a week I see other SN moms, at Emily's 30 minute aquatherapy appointment.  We chat and relate, and I am reminded of how hard life is: this week, a mom turned to me and said, of her daughter in the pool with Emily, "She wants to be a ballerina."  My heart broke, for her and her daughter, because I know what she was going to say next.  "She doesn't understand she won't ever walk.  And I don't know how to explain it."

I am certainly grateful for the therapy and work we have fought for (never been handed, but fought) Emily to receive.  But for every therapist who comes into our lives to work with our child on speaking, eating, throwing a ball, walking, balancing, I am reminded that I--as her mother--am not fully able to provide those things and give her that development.  So as irrational as it is, yeah, I feel like a failure as a parent on that front. 

If you aren't living it, please don't criticize.  Trust me, we are criticizing ourselves already.  Don't judge an individual or SN parent...there is a whole world there that you aren't seeing.  Don't question what we are doing.  Don't offer your unprofessional "professional" advise.  We have already researched it and either booked an appointment or ruled it out! Don't weigh in on how policy is "unfair" when it give accessibility to a child who is disabled.  Don't suggest we not go to Disney...or a particular school....or a park....or an event and don't try to convince us otherwise.  When you tell anyone their child doesn't belong, nothing you can say will convince them otherwise, and nothing should convince them otherwise.

Instead, try and understand what weighs on us.  Don't belittle our feelings or emotions or struggles.  Don't ask us to put on a happy face.  Don't tell us we are overreacting.  Instead, offer respite, offer an ear, or a break from the perpetual smile-while-fighting-for-my-kid.  Shortly after I was scolded for not being patient that same day in Wegmans, I saw another woman eying me up.  I avoided her eyes like the plague, just not sure if I could take any more.  But she followed me, and eventually physically touched my arm to get my attention.  She looked at me compassionately and said "I see you here often with your beautiful daughter.  I know she gets a lot of attention, that many people stop to ask you things.  I just wanted to say, Great Job, Mom.  She is so engaging and friendly, and you deserve credit."  And then she smiled and walked away.  I was in tears by the time she was done, flattered and so very thankful for the acknowledgment. One moment, one kind phrase, made me one rejuvenated mom.