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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….

The Perfect Night That Wasn’t

Last night’s trip to the mall was an embarrassment. Even Dad had a hard time with B. My oldest wanted to go to a few shops with her Christmas money. So we made it a (supposed to be) nice family outing. Dinner at Golden Corral and then the River Ridge Mall.

Even the restaurant thing kinda went downhill. But the mall trip was worse.

At the restaurant, he would barely sit in his seat, was boisterous and loud. He while in a happy mood at the time (which I AM thankful for) notably bothered certain surrounding customers with his “antics”. It was almost like the viewing of things to come. And that was the MILD part of the evening.

Like I said, the mall was FAR worse.

He was running around, trying to get (way) too far ahead of us, walking BACKWARDS or spinning as we walked in the semi-crowded areas of the mall.

As we were ending our night in Sears, where we had initially parked, anyways, it was BAD. Constantly handling things, running in to and hiding in racks, running off and “escaping” down in to other areas of the general area that I was at.

It got so bad in Sears, that at one point, I grabbed him by his shirt collar and held on for dear life. Of course then I was “choking” him and he was almost yelling for me to let go. I am SOOO thankful that barely a customer was in that area.

He also tried to go out the “merchandise pick up” door just off from the girls/baby section. And of course, I stayed there with him and the older one, who was still shopping as Dad took the younger one to use the toilet.

I honest cannot say what got in to him to be so freaking high strung. But good Lord, I was sure that someone was gonna call CPS on me for “man handling” my kid as a means to corral him.

Oh! And he almost knocked over a couple of displays or hit people as he walked backwards AND spinning. Both in Sears and in the mall area its self.

It was just a washout of an evening. All thanks to one kid and his actions. What was meant to be a NICE family outing, turned in to a chaotic nightmare for all (as in the two sisters and myself and Dad).

*Vent over*

Enabling vs Disabling

Thanks is going out to a fellow Special Needs mom, Amy, over on FaceBook, who I have become friends with, and her “push” for me to post the following.

We met in a WONDERFUL group for parents like ourselves who are parents to kids that are disabled. And it’s a locally-based group for our region, but we accept people from outside the Virginia state lines, as well.

The group is called Parents For Progress, or P4P for short. Our kids have ALL different types of disabilities and mental capacity. We sometimes DO disagree, but never get cut-throat.

So without further ado…

Just two summers ago, I learned how to swim/float for the first time. I was 33 years old (now 35)! If I had what I needed to have done BY the time I almost turned 6 or 7 years old, then I would have learned to swim much earlier, among other things.

Sometimes, even all of these years later, I can find myself angry at my mom for disabling me even more and literally taking away my childhood. And I refuse to let my son to think/feel about me, let alone his sisters for doing the same to them.

I love my mom, and always will. But ever since I can remember, I vowed and have kept my word to it, to NEVER be like her, where parenting is concerned. Even after she had died. And to this day, I will have a moment of anger and resentment pop in to my head. Especially around the anniversary of my “official removal” of my trache tube (December 1, 1989… not even two months after my mom died).

Heck, the way I have been told in the past, I was THE reason why my parents never had anymore children after me. She was scared another baby “would turn out to have the same problems”… Um, MY problems were *somewhat* because of her (having a 50 LB tumor sitting next to me in-utero).

I was extremely tiny and lightweight at birth. I was born almost a month early with extreme fluid on my lung (which collapsed from the pressure and weight of the fluid) and a esophageal fistula (a break in my esophagus tract to determine between the airway and the stomach routes). I died on the operating table like 2 to 4 times in the 18-hour repair surgery (after a touchy care-flight ride to another hospital when I was LESS than 24 hours old), which forever changed the appearance of my shoulder blade area on the right side (and left me asymmetrical in the breast area).

From the day of my birth, she basically (at first, I understood being that I was so tiny and helpless, and gravely ill with having NO hope for a chance at life, really) became a “helicopter mom”. Later in my elementary school years, she was STILL so overly protective, that not only did she volunteer, but also was a yard duty person at lunchtime, a lunchroom supervisor, but decided to also become an “assistant” for MY classroom or one near me as to “keep an eye on Missy”… In other words, I had NO break from her. She watched me like a hawk. 24/7. If I did go to a friend’s house, most times, she would constantly check on me in one way or another.

Now, maybe some people, especially fellow parents, like myself, of disabled children, can see it from our kid’s perspective as well when it comes to being either too lenient, too harsh or too overprotective (or even NOT protective enough).

I know all too well the fine line EACH AND EVERY ONE OF US walks on a daily basis with our kids. It’s such a difficult balancing act. But they also thrive on being treated as “just another normal kid”. Even when getting in to trouble.

NT Parents vs. SN Parents

I am a mother.

I am a mother to three children.

I am a mother to three kids, where one of them has “problems”.

I am a mother to three kids, where one of them has “problems”, but that I love all equally.

You say that there is NO way you could do what I do, put up with what I put up with, and defend what I have to defend.

You say we are a strong, but rare breed. But there are more parents like me than you most likely even know. Because we don’t look to be recognized or placed on a pedestal.

We do what we have to do, when we have to do it, as to ensure that our “special” kids are getting everything in life that they deserve.

That includes being as close to “normal” as we can get them. And to obtain the specialized services, that though are supposed to be rendered by Federally mandated Laws, are not always put in to place.

We rejoice at what most people take for granted. Especially when they are “late bloomers”. We cry from the frustration. Not just our own, but the frustrations that our children display.

We want what ALL (okay, MOST) parents want for their kids. A better and fulfilling life.

You and I aren’t THAT different in the world of Parenting. We, like our children, just do things a little bit different from the rest of you. And we see things (like first words, first steps and the other norms of growing up) a tad bit differently as well.

Other than that, I’m not much different from you. And yes, you CAN do what I do on a daily basis. Because when push comes to shove, when it comes to your child, you would do most ANYTHING and move every mountain and boulder to help your child achieve their very best potential.

Do I want to just throw my hands up and quit? YES! Sometimes, the fight to help your child achieve can really tire you emotionally and mentally. As can their daily struggles and fights of will. But in the end, no matter how much you want to just turn around and walk away, you CAN’T. You know for a fact that you have invested WAY too much time, energy, and most important, love in to helping your children succeed to the best of their ability.

So, the next time you think to yourself that you could “never do my job as a parent”, or think I must be a lot stronger than you, take a step back and think, and know that when it all comes down to that fine line in the sand, there is really no line at all.

Schoolward Bound. Fifth Grade, Here He Comes!!

This past week we are about to leave, and the one that is coming upon us has been and will be fairly busy. It’s back to school time. And I think that ALL of us are ready. For the most part, anyways.

This week was filled with filling out paperwork, taking in paperwork to be filled out by Medical Professionals, a doctor appointment and school supply shopping.

Geez! Just thinking of what I just listed, I’m tired all over again! *hehe* (=

This coming week, it’s REGISTRATION time! And this means now, TWO different schools for three different kids. My oldest is moving on to Middle School.

B is in fifth grade this year. And thankfully, I was able to place him in with my oldest’s former homeroom teacher, who is the ONLY one of the three in their grade to be Special Education certified.

It also helps that she taught my HUSBAND when he was a kid at another school, for the third grade. And she started LAST school year to acclimate him by saying good morning to him, giving him his “morning hug” (their classrooms were next to one another at the time between the two grades). And she already has gotten an idea of what his needs will be with classroom placement and what will possibly work best to get the best ability out of his potential.

She runs a pretty tight ship. You do as expected, she is your BFF. You decide to make her life hell and not do as instructed, then your ass is grass. And he needs that kind of firm structure. And she is already on to his manipulations. BONUS!

Do I worry? Yep! But not as much as I have with the teachers of the past in regards to B. This lady is one of the best in her field. And one of the most patient and kind. But also one of the most strict and not able to be bamboozled, too.

I’ll more so worry NEXT year, then I will THIS year. Because there is a VERY good chance that B and his older sister will NOT be in the same Middle School, being she was accepted in to a school across town that takes those that are highly advanced/gifted. If she is able to remain there next school year (2012-2013), then he will be in our Zone School for Middle School all on his own.

Yes, he too is advanced in most areas of study. But he doesn’t have the work ethic and focus for a Gifted Program. Thanks to his emotional instability, lack of maturity, and his severe ADHD it takes him out of the running for advancement such as what his sister is in. And it hurts me. But at the same time, I can safely say that a setting such as that is clearly not for him.

Should I compare? No. But it is extremely hard to NOT see the difference versus the similarities.

You sometimes, I feel, HAVE TO compare the “odd one out” to the others because it forces you to see just how different the one with the problems truly is from most of society. It makes you step back and think a little more and be more compassionate, understanding and willing to have more patience. Not just with YOUR child with Silent Disabilities, but other children (and adults) with the same afflictions as well.

So, here is to (hopefully) smooth sailing for this school year. In just over a week, and then all three are off on another school-year adventure of learning and fun. But this year, it will be minus their big sister. And I think they will do just fine.