Lessons From A Grocery Checkout Line

I have a friend, if not more-so an acquaintance. We both belong to and participate actively in a group on FaceBook that caters to parents of Special Needs children from around our general area of living. Some things, our kids share, but mostly don’t, in the terms of having diagnoses. In the end though, we love our kids with a passion, and are more widely accepting of children that “act out” and of their parents than most people in the general consensus of society.

Yesterday, this dear lady, who’s a mother of three, with two of them being Special Needs, told the group of a great story. Of courage. Of self-preservation. And of compassion.

My husband works for the Kroger Food & Drug grocery store. I had also been employed with them for a few years, up until my youngest, who is now seven years old was born. And his (now transferred) Grocery Manager, and he have a common bond.

They both have Special Needs kids. We only have our son, really. But the Grocery Manager has twin boys. And they are BOTH (severely) Autistic, and one is non-verbal. Both, like my son, have behavior issues, as well. ADHD, too. Both of our families have come under scrutiny out in the community. Mainly because of the aforementioned behavior issues. We have dealt with the stares, the head shakes, the whispers. And yes, even with the unwanted “advice”.

But what this one mother and her children went through, really speaks of all of us in one way or another. And of our children. When I grow up, I want to be JUST like her, I think.

Here, in HER own words (with names left out to protect her privacy, and that of her family), is a recount of what had transpired at her local Kroger store.

“We were in Krogers this evening checking out on a unplanned but unfortunately necessary grocery run, a disturbing event for all of my boys because of their sensory issues. My oldest son was turning over each of the boxes of chewing gum one by one so that the labels were all facing the same way. My 8 year old was clicking and rocking, and my 5 year old was pushing meltdown because of his discomfort being around so many people. My 17 month old daughter was beginning to overheat in the store, because the heater was turned up so high to overcome the cold outside. As I went to try to cool her off a bit by unzipping her jacket she began to fuss because she was becoming uncomfortable.

A woman in line in front of us who was already checking out said to the cashier “I hate it when mothers don’t take the initiative to discipline their children… Its so sad to see someone have so many kids.” The cashier knows our family, and looked at her in a bit of shock.

She said “The boys are autistic, and they’re pretty amazing kids.” The woman shook her head and started to say something under her breath about what a waste, and my 9 year old Aspie son turned sharply and snapped,….

“**I am not a disorder, I am a person.** Just because I appear not to be listening to you does not mean that I cannot hear what you say and do not understand it.”

She looked at me and said “Well, aren’t you going to say something to him?!” I looked at my son, I looked at the woman, and then I looked back to him. I was so proud, it was the first time that I’ve ever heard him speak up for himself, and he certainly doesn’t speak his mind or feelings often.

I paused and looked at him and said “You’re absolutely right bug… you’re an amazing kid.” And then I looked at her and shook my head, smiling. I said to her “Yes, its such a waste when people don’t try to understand what someone else might be going through.” She huffed, paid her bill, and then left the store.

The cashier smiled at me and said “He’s having a good day today, huh?” For everything these kids have been through this week, it wasn’t just a good day… it was freaking amazing.”

WOW! What an amazing testimony. And to me, not only did the mother and the son stand up for themselves, but they also stood up for ALL of us. Parents and afflicted kids alike! They said outright what so many of us want to say, but can’t. Maybe out of fear of retaliation. Maybe out of utter embarrassment of the situation (though not due to OUR actions/reactions). But they had the courage to do it. And I HIGHLY commend them for it.

So, for those of you reading this, and don’t really understand “our world”, please take note. Do not EVER judge a person or a situation solely by what you are seeing, or even hearing. If a child is doing something quirky (like moving/situating a space bar at the grocery checkout counter) but is in NO way harming you, then leave the person alone. If they are mumbling to themselves, don’t stand there and stare. When you think that someone cannot hear you, that’s when they can hear you the most. When our children are acting out, don’t just auto-assume that it’s a “bad seed” with parents that are just not willing to “parent” our child.

It’s people like you, that when you are THAT mean spirited to be as the lady in the checkout, that we hope, wish and pray that you too will end up having a child or a grandchild JUST like ours, to show you the ways of OUR life. Sometimes, lessons are learned the hard way.

Our children never asked to be the way that they are. For some, their minds are their own personal prisons or hells. They can be locked up inside. With barely being able to speak, think straight or communicate their needs and desires.

We as their parents and caregivers, struggle EVERY single day to make life as “normal” as we can for our children. Sure, we have to do SOME things differently with interaction and behavior management. But we take it on as a labor of love. Unconditional love. We see what you REFUSE to see.

So, the next time you see a child in the grocery store being “strange”, know that they CAN hear you. They DO see you. And they indeed HAVE feelings that can and DO get hurt because of oggling eyes and opened mouths, that seem to go right along with CLOSED minds. And us as parents WILL find you to be the DISABLED one.

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Special Needs Parent of the Month (February, 2012)

Welcome to the “Special Needs Parent of the Month” post, where MONTHLY, I will feature a Special Needs Parent. If you are interested in being considered as a featured SN parent in a future posting, please email me at melmom2angels@yahoo.com.

This month’s parent is Holly. She is a sweet, very energetic, hilarious and a bit of a potty-mouth (LOL!) lady. She wears her heart on her sleeve. And she has a pretty full plate. In her own words, she will tell of herself, her family, and her life with having a disabled child.

This is Brooke.

She’s my fourth child, my second daughter, and the only one born with an extra chromosome….

Brooke has Down Syndrome.

But please, don’t feel badly for me-or for her. Don’t make that cutesy smile and give me a look of pity mixed with wonder at how I do, especially with four other children…

Because Brooke? Is absolutely fantastic and a joy to have in our family…

I’m not going to pretend she’s exactly like our other children, because she’s not…

There is a developmental delay with Brooke. We just had an evaluation last week and she’s about 6-9 months behind her typical peers…not horrible, but still something that needs to be addressed so that Brooke can the best life possible…

So we do therapy. Brooke has physical therapy once a week for an hour, and occupational therapy and speech therapy twice a week for 30 minutes each. Is it a pain in the butt? Sometimes. Is it inconvenient? Sure, there are days I’d like to not plan around it…but we love Brooke, and we want her to thrive…so we go…

And Brooke loves it! She gets a kick out of people applauding for her, in fact, she expects it now no matter what task she does, so getting constant attention and love for doing puzzles or pointing out pictures in a book is right up that chunky girl’s alley!

But life isn’t all about therapy and trying to make her better…I’m a firm believer in letting her be a regular child.

Brooke plays with her brothers and sister. She pushes her babies around the stroller. She throws the ball. She colors on the walls. She claps and dances along to The Wiggles. She gives hugs and kisses. She throws her lunch at the wall when she’s not happy with what I’ve made.

Brooke is more like your child than different…

So what if she’s going to need a little bit more help learning? So what if she doesn’t have as many words as your kid does right now?

Brooke will catch up…

And we’re going to do anything we can to help her have an amazing life…

Because she’s worth it.

I’m a shameless self promoter by the way…read my blog at Holly’s House-Not a Perfect Mom’s Blog and check me out on my FACEBOOK LIKE PAGE too. And if you really love me, follow me on twitter. And uh, I hate to admit it, but I have a Google + page too #hangsheadinshame. Warning: I have a potty mouth….

"ADHD isn’t *anything* but a myth."

This dude’s nothing but a crock of crap! He is NOT a certified Medical Doctor (and actually ADMITS to such claim). And apparently, so is Depression. It’s a “moral dilemma”. The ADHD is an “imaginary” medical condition according to this dummy.

Ones like this asshat has NEVER had children most likely. Or never had kids with these disorders.

Medication Station… To Transfer Or Not. That Is The Question.

There went that idea. At least for another 2 weeks. I wanted to transfer B.’s meds to the store that my husband works at, seeing as Walgreen’s dropped my girls and their insurance plan.

Although his IS safe, at least for another year, I don’t like the idea of having everyone all over town with their meds. I called the store’s pharmacy (Kroger), and sure enough (like back when he WAS with them), they have NONE of the Vyvanse in his strength requirement (top dose of 70 mg).

So, this means filling again with Walgreen’s, calling Kroger in 2 weeks to ensure that they place the Vyvanse at that dose on order to come in, in time for us to fill it.

You would think though, being it’s one of the MOST WIDELY used drugs for ADHD, in all of the available strengths, that it would ALWAYS be on hand.

I have some thinking to do over the next couple of weeks over this and mull the decision over.

To me, it’s just plain common sense to keep in stock, the drugs that you as a Pharmacist knows are of popularity in prescribing. To do otherwise, could cause you to lose customers or (potential) ones. And what if the person was to have ran out before you can get more in? That COULD have deadly consequences.

Team Amelia… The Fight For Life and The Debate of Society’s View on Human Worth

There is a little girl named Amelia (Mia for short). She is almost three years old and suffers from a rare genetic disorder called Wolf-Hirschhorn Syndrome. Part of the disability is severe cognitive delays and disabilities. But apparently, they don’t slow her down.

Amelia can laugh, smile, plays with her family pet and is apparently a little girl that loves to have her picture taken. In most ways, she is a “normal” little girl. With some pretty big odds stacked against her.

She also is going to need a kidney transplant in the next six moths to a year. Or else, she will surely die.

But one doctor, from Nephrology, has flat out refused to help her. Even though the parents do NOT wish to have her on the transplant National Registry. They wish to donate via family members and themselves. Still, the doctor at Children’s Hospital of Philadelphia has refused.

What in fact was the basis of refusal to operate and give Mia a second chance at a BETTER and a HEALTHIER life?

“Mentally retarded”, and “fear” of the drugs she will need post-transplant to let her kidney survive giving her seizures (she ALREADY has them!) or make her mentally “retarded” (she already IS!). So, how much worse can this honestly get for her, other than a CERTAIN death sentence??

The following is excerpts taken from Mia’s mother’s blog entry on wolfhirschhorn.org.

“The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”

“DO OTHER CHIILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”

“Yes, but it is different for her. She is already brain damaged and mentally retarded.”

He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”

The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…””

““So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

“Yes. This is hard for me, you know.”

My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”

“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.””

““Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”

They both get up and leave the room.

I look at Joe who is sobbing trying to get the stroller and Amelia’s backpack. I break down with him before we head to the parking garage.”

Some people are calling Amelia’s parents “liars”. Some are saying she is embellishing the story. Some are hitting her for invoking emotional responses from the reader. As a mother, as a mother to a disabled child, and as a TRANSPLANT RECIPIENT *myself*, of course I have an EMOTIONAL response to this outrage!… And my parents had faced a VERY similar situation with me.

What also makes this sad and angering for me is that the Social Worker that met with Mia’s parents, along side of the doctor, was rude, insensitive, unprofessional and it sounds like she almost ENJOYED going toe-to-toe with the mother, when Mom became “defensive” in the fight for her child’s life.

Here is the statement that CHoP made on their “Like” page last night in regards to the entire situation…

Children’s Hospital of Philadelphia

“We have watched with great concern the comments regarding criteria used in making transplant eligibility decisions. We understand your concerns and reactions to the Facebook postings.

We strive to provide the safest possible care for our patients and we make transplant eligibility decisions based on widely-accepted, medically valid methods, with many factors considered. We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments.

CHOP’s transplant programs continue to evaluate and perform transplants on some of the most complex cases in the country. We use an established framework for consistent evaluation and transplantation. Each child is evaluated on an individual basis, taking multiple medical, surgical, and psychosocial aspects into consideration. In each evaluation, we consider the possible risk and outcome of the recipient, potential donor options, as well as alternative therapies.

In order to determine eligibility for transplantation, a multidisciplinary evaluation is completed by several members of the transplant team, which would include careful assessment of a patient by surgical and transplant specialists, as well as, psychosocial, and neurologic specialists. Parents and family members are very much a part of the discussion.

We wish to emphasize that all determinations of eligibility for transplantation are treated on an individual basis. We make all decisions regarding eligibility using a non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.

These communications are very important to us and provide us with an opportunity to always re-examine and reassess our approach and process. We hope that we can continue to improve and continue to provide exceptional care for children with organ failure.”

Yes, be ANGRY at the Social Worker in question. Yes, be ANGRY with the “Specialist” doctor in question. And I say YES, to be angry with Children’s Hospital of Philadelphia for obviously trying to “shut up” those of us in the Disability Community by deleting our posts of concern and shock at the outrage that lays before us. After all, the doctor and their Social Worker are REPRESENTIVES, faces if you will of CHoP.

And here is the face of those with Mental Disabilities who is in her own way, defacing the stigma and dogma of a society against her in the fight for the RIGHT to live as full and as long a life as she can have…

How can we in the 21st Century, in 2012 think of ANY person, child or adult, that is mentally handicapped (in any severity of the term) as just a piece of meat that is more fit for the trash can, than as a HUMAN BEING that have EVERY right as a “normal” person to live their life to the fullest measure and length as possible?

What is happening to this little innocent BABY and her parents is beyond deplorable and reprehensible.

How does a prisoner’s “rights” outrank a (disabled) child’s “rights” when it comes to LIFE-SAVING surgery? It’s beyond my comprehension. To have this type of “backwards” thinking is an atrocity to mankind.

On The Merry-Go-Round We Go!..Again.

Well, another appointment has come and gone. Another one minus his Case Manager. THIS time, due to a death in the family.

First of all, we talked about B.’s medications and his eating “habits” of BARELY eating. Especially since again, he has lost weight and is showing the visible signs of it.

So, the doctor and I have decided to cut back some on his Vyvanse by 20 mgs. I will be placing the contents of the entire capsule in to a glass of water, pour out 2 ounces of a 7 oz. glass, then have him drink the other 5 oz. of water to consume 50 mg. of the medicine. I should know in a couple of weeks of doing this if it was the right move.

As for the Seroquel and the Intuniv, they are staying at the same dose of 50 mg. and 2 mg. amounts.

If push comes to shove, I will strongly consider a drug that is used in cancer patients to induce hunger and the wanting to eat. This would hopefully counter the unwillingness to eat and help him gain his weight and proper amount of muscle mass back.

His spinning/walking backwards is apparently a compulsive problem. He does this a lot. Like in Sears and the mall, where he almost knocked some things over and almost hit in to people.

And I found out that the noises and the sniffling (constantly most times) is a couple of tics that he has developed. But I cannot say for certain that it is medication-induced, or brain-induced tics. I think that at the next appointment in April (or was that March?), I will ask about that.

Also, his nose bleeds have been more active.

The highlight to all of this? He hasn’t been getting in to AS MUCH trouble in school as of late, with his behavior. Homework and attention? Still not that great. But we are working on it.

Special Needs Parent Monthly (#1)

Welcome to the kick off of a NEW blog series, where MONTHLY, I will feature a Special Needs Parent. If you are interested in being considered as a featured SN parent in a future posting, please email me at melmom2angels@yahoo.com.

First up is Robin. In her own words, she will tell of herself, her family, and her life with having a disabled child.

basic info….stay at home mom, married 16 years in Feb., I enjoy reading, photograghy and word games.

have 2 sons Derek 11 and Jacob 13..

life as a special needs parent well, I don’t sleep much lol. it’s a struggle to balance my time between my sons since Jacob needs so much of my time. Jacob was dxed at 2 years, he was a good baby, well a great baby…only cried when he was hungry. Everyone was jealous but in the back of my mind I was worried. He was To good! He didn’t regress, he just reached milestones late. He didn’t babble, point, or “play” like other kids his age. He started PT at 8 months, Ot and speech at 18 months and early intervention at 2.

He is in the 8th grade and I’m going to start home schooling next because he will be going into high school and I feel like he will benefit more from one on one and I can pay more attention to the areas that of important to Jacob. He LOVES music, football, water, and food. lol which is a challenge because he is on the gf/cf diet.

He’s a good dancer. He has severe IBS and when he is in pain he becomes very aggressive. He doesn’t know his own strength. He gives the best hugs in the world! He has a lot of sensory issues and likes deep pressure and massage.

He likes to be petted on his arms some times which gets us strange looks in public. lol Doesn’t bother me, I’m outspoken if people are rude I let them know about it.

Autism is just part of our family….you learn to adjust your life accordingly. Jacob is non verbal so I am his voice….and I have a big mouth (hehe)!