On September 12, we hit a bittersweet milestone. It was something we wanted, and yet didn’t want, to happen. That was the day Little E got his first, and hopefully only, wheelchair.
We don’t know why Little E can’t walk. We have spent the last five years trying to find out. Doctors don’t know why, either. He has had a CT scan, two brain MRIs, a full-spinal MRI, three EEGs, and various genetic testing, all of which were “normal.” They’re quick to tell us what the problem ISN’T, but unable to tell us what the problem IS. Aside from his inability to walk, Little E has other issues: developmental delays, autistic-like behaviors, speech delays, even something that “looks” like seizure activity, but is, as yet, undiagnosed. In spite of all these issues, he is a smart, sweet, gentle soul.
When Little E started pulling up on furniture at 16 months, we knew he was getting a late start. Still, it was the usual first step in learning to walk, so it never occurred to us that he would reach his seventh birthday and still be unable to walk independently. When I became pregnant with Keedo, Little E was two and a half years old. I truly thought he would be walking before Keedo ever thought about it. When Keedo started pulling up, I watched with mixed emotions. I celebrated for him, but my heart ached for Little E, who looked on with a mixture of curiosity and frustration. Little E watched in amazement as Keedo started toddling about the house. He doubled his efforts, pulling to a stand, but toppling over. He would cry, scream in his frustration, but he kept trying. The problem was, he was getting older. Before, when we went out, no one really noticed that Little E couldn’t walk. He was still young enough that it wasn’t unusual for him to be in a stroller. As Keedo became more mobile and, therefore, independent, people started noticing. And, for some reason, people felt the need to comment on it. To us. In front of him.
There were the people at restaurants, both staff and patrons, who became annoyed at us for bringing a cumbersome stroller in. People who stared as we lifted him out to put him in a chair. And I can’t forget the “constructive” criticism offered by various people because I was feeding Little E. Never mind that he was unable to feed himself with utensils because of dismal motor coordination. Apparently, I should just let him sit and watch everyone else eat while he goes hungry because if he were really hungry, he would miraculously develop the motor planning and skills to manage utensils.
Then there was the grocery store, and getting the “stinky eye” when Little E acted out or simply had one of those “seizure-like” episodes. It wasn’t just adults. Kids were as bad, if not worse. We would pass a child in the store and Little E would say, “Hi!” only to be met with stares and silence. We could actually see and feel the judgment of people as they looked at Little E, riding in his stroller. Despite a diagnosis of autism, Little E tried very hard to be social. He was interested in people, in his surroundings. He would look up at people as they passed, smiling, saying hi. I soon realized that “people” aren’t as “social” as we’re led to believe. They ignored him, looked the other way, and even walked the other way. Wow. And I’m supposed to be working toward getting my son to be as social as they are?!
The last straw was a visit to a Rainforest Cafe. It you’ve never been to one, they have a stroller parking area at the front of the souvenir store. They are quick to tell you you have to leave strollers there. We left Keedo’s stroller, but explained that Little E couldn’t walk and his stroller was medically necessary. The host at that point was understanding and sent us on through. When we reached the hostess at the entrance to the actual restaurant, she stopped us. She looked at Keedo, who was walking beside me, looked at Little E in his stroller and commented, “Well, this is backwards. Shouldn’t you (pointing at Keedo) be in the stroller? (Looking at Little E) You’re too big to be in a baby stroller like that.” The look on Little E’s face was a heartbreaking mask of humiliation and shame. His expressive speech may be lacking, but he hears and understands EVERYTHING. The mama wolf in me was at instant attention, but my husband was faster on the draw: He answered, “If you actually stopped and thought before you spoke, you might realize that if the three-year-old is walking and the seven-year-old is in a stroller, there is probably a reason! He. Can’t. Walk.”
Her reply? “Oh. Well, we have your table ready.” No apology, no remorse.
We never dreamed it would come to this. He’s been trying so hard, for so long, to walk. And he is close. Very close. Still, at seven years old and 50 pounds, carrying him is getting more and more difficult. He had the medical grade stroller for outings, but it allowed him little independence. It also seemingly allowed random strangers to make rude comments and give us unsolicited parenting advice. So, after five months of phone calls, battling with insurance, a doctor’s office and a hospital, we finally received his wheelchair. It was a Wednesday. Little E was thrilled. He rolled himself out of the pediatric rehabilitation center that day, head held high and smiling proudly.
Two days later, we made our first shopping trip with him in the new chair. I was a nervous wreck. How many people and objects would he run into? Would he listen and follow directions while in the throes of his new-found freedom? Our first stop was Costco. Nice, wide aisles, sturdy shelves, fewer random displays for him to topple. He did AWESOME. He stayed with us, listened and followed directions and didn’t run into anyone or anything.
While I was, admittedly, a bit surprised at his instant maturity, my husband and I noticed something else, something that had little to do with Little E. We noticed an incredible change in the way people treated Little E. Allow me to explain.
Shopping trips are my personal hell. Little E *looks* like a typical kid. There is no physical evidence, no marker of his disabilities. So when he does that moaning tensing thing that kind of looks like a seizure, people stare, disgusted expressions clear on their faces. When he gets overwhelmed and screams, people give us the evil eye. All parents know the eye I’m talking about. That, “Do something about that brat” eye. And then there are the rude, snarky, or downright shitty comments. Sometimes, I’ll give that look right back, but usually I need to develop tunnel vision. Ignore everyone and everything so that I can focus on Little E and help him to settle down. Honestly, in Little E’s entire seven years, I can think of only three times that people offered to help or even just offered a COMFORTING word or two. Three times. In. His. Life.
So imagine preparing yourself for a stroll through that usual hell and seeing something amazing. People smiled at Little E. They spoke to him. No unveiled disgust when he did his little tensing/moaning thing. He wasn’t pointedly ignored, treated as if he were invisible, noticeable only if he acted oddly. People were NICE. People were UNDERSTANDING. People showed COMPASSION. Well, except for kids. Kids still stared. Some backed away, eyeing him suspiciously. When Little E would make eye contact, smile and say “Hi!” the kids stared, saying nothing. Please, parents. Teach your kids basic manners.
So what changed? Little E was the same little boy that day as he was the weekend before, the month before, the year before. The only thing that changed for him was his mode of transportation. What changed was the perception of others. Going from a stroller to a wheelchair changed the perception from crappy parents with a lazy, spoiled brat who needs a good spanking to disabled child that “can’t help it.” Who knew dignity had a $6,000 price tag and took the form of a wheelchair?
The thing is, many kids are disabled. So many. But many of these kids’ disabilities are invisible. They don’t have a “look.” They have behaviors. One in 88 children aged 12 have autism. The number is higher the younger the age. These kids aren’t brats. A “good spanking” won’t cure autism. Their parents aren’t bad parents. In fact, most of them are incredible parents who should be wearing a superhero cape.
So the next time you see the 10-year-old throwing a tantrum on the floor of the grocery store and your first thought is, “I can’t BELIEVE that mother is allowing him/her to behave that way! He/she is too old to be throwing a fit like that!” stop yourself. Instead, think about the fact that if a child is acting out, he or she may have a disability. A disability that is invisible. Think about the fact that perhaps, just perhaps, you don’t know the whole story. Consider walking in their shoes, if just for a moment. Then offer help. A kind word. If you just can’t do that, at least don’t compound the problem with stares and judgmental looks or comments. Believe me. The parents will feel the difference. We will know. And we appreciate it in a way you cannot even imagine. You may ask, “What if the child is really just being a brat? What if he/she doesn’t have a disability?” Well, in today’s society, that isn’t likely, but even if that is the case, does it really hurt to show a little patience, compassion, empathy?
Peace, Love and Light,
~ Gilded Thinker
Born a Texan, now living in the high forest of middle Tennessee. I have a strong, incredibly supportive husband, and I’m a stay-at-home, homeschooling mom to my two beautiful boys. Don’t let the southern drawl fool you. Mild-mannered lady I am not. Truth. Justice. Healing. For those things, I will lace up my combat boots every day and fight. And I will win.
This is beautifully written. You son is absolutely perfect in every way. Thank you for being a warrior for him. I can only pray that I am educating my children well enough to love and embrace children for who they are, no matter what they look like or can/can not do. Thank you for sharing!
Fantastic piece! Go Little E!
I have found the same things you described, as an adult.
I am autistic (as is my son who is 9) but I am also physically disabled due to end stage osteoarthritis in my spine and multiple autoimmune diseases. My hips are pretty frozen now, but before they stiffened, I was using a cane to reduce some of the stress on the joints (it was the left hip and the second one followed) and it was incredible how many people seem to need a visual cue to be kind and non-judgemental to another human being. Without the cane: people sigh loudly, stomp, and make rude comments if I am slow unloading my cart onto the conveyor at the market. With the cane: they offer to help and then they match my slow speed as though going fast might be interpreted as insensitive because it showcases my slowness. Without the cane: nobody holds a door, even with bags of groceries and a visible limp…not with a stroller and not when carrying a baby, not even hugely pregnant…. With the cane: they open the door and smile and even wish me a good day! With the cane, people assumed I needed their help and kindness when helping my son during a sonic meltdown. They offered to push my cart, so I could hold him. Without the cane, we are invisible until he would meltdown or if it took me longer to checkout or if I had to ask a clerk to load something heavy onto my cart and then we’d get the comments and looks… Anyway, I’m glad I’m not the only one who noticed this. It does bug me that so many people, even some family, won’t take our word for it and won’t even read up or ask how they can help. It’s like there is no benefit of the doubt for us. But add an implement like a cane or wheels and suddenly we are worthy of the help of others. We can raise awareness, the way this blog entry has. We can educate. We can speak up…
This kind of reminds me when I finally got my sons autism diagnosis and approval for his disability checks. I had spent years trying to tell people something was really wrong with my son and I was treated like a bad crazy mother. when I finally got the diagnosis it was like ,To finally have acknowledgement…..its nice in between all the battles we have to fight…when people acknowledge our struggles
recalled reading this a while back, and sending it on in case it may be of interest. Apologise if it is yet one more suggestion already looked at.
Rebuilding Neural Links
http://neozen888.wordpress.com/2011/11/29/rebuilding-neural-pathways/
BBC site with Video Argentina
http://www.bbc.co.uk/news/world-latin-america-15695991
Better Explanation
http://www.colorsmagazine.com/blog/article/step-by-step
Another Good Video
http://www.youtube.com/watch?feature=player_embedded&v=tW8F40MCz7U
Jorge Cardile Voelio
http://www.estimuladordemarcha.com.ar/Bienvenida.html
http://rehabilitacionymedicinafisica.blogspot.ca/2011/11/voelio-un-padre-construye-un-andador.html
Voelio Site
http://www.voelio.com.ar/
Thank you for the information, Lynn!! I’ll definitely check it out. 🙂
You’re welcome. About forty years ago, I read a Non Fiction story about a family whose daughter had a similar inability to use legs. Somehow they got the idea/information to do extensive/exhaustive one on one physio with her feet and legs, daily. Something like six or more hours per day. I recal it called “patterning”, and designed to “reteach” the legs and feet what they should be doing. They had a shedule of self/family/friends, and worked at it six or so hours daily for years. From what i recal, the girl went on to walk well, including ballet lessons. I cant find the name of the book.
I was wondering where all the hits were coming from on my site. 🙂 It is amazing how information can be spread so quickly and efficiently online. Your story was very moving and heart-felt.
I have worked with developmentally delayed children in the classroom for many years. It is so sad when feeling helpless and knowing there are better solutions and being unable to express them.
I worked one-on-one with a few autistic children and even one blind thirteen year-old who became close to my heart. Not being able to help as best I could, I dedicated my life to seeking answers from many, many western healers and Tibetan lamas. My website is dedicated to finding the ROOT CAUSES of most physical and mental disease.
Most teacher’s (in the school system) don’t understand what therapies truly and safely work. And most care-givers aren’t qualified to provide alternative-methods of healing for fear of being sued. Just know that, anything can be healed as long as you have FAITH as well as the proper REASONING such as:
“The Feldenkrais Method works by facilitating the formation of new neural connections and patterns, irrespective of the cause of the child’s limitations. New and effective patterns of movement, thought, and feeling, are learnt.”
Healing was meant to include the WHOLE body, mind, heart and soul and not just looking at one thing (ie. genetics) as most western doctors do. I believe things are going to change but it happens slowly as they always do. So, it’s up to all of us to do the proper research and spread it around.
We can start with proper DIET and EXERCISE which is something that anyone can control at home. If you or anyone needs any further help…please feel free to write.
Light,
Neo
Brava!!! I am ashamed to say I was that person wondering what the hell were these parents doing that they would let their children behave this way in public? Then in my early 20’s I started working with DD adults many with profound delays. It was the toughest job I ever loved. There are no accidents, because I was with that job for 13 yrs until I had my son which was later diagnosed with autism. Everyday I’m grateful for any progress and even more grateful for retention of any given skill. That job made me truly understand that illnesses don’t always show and my son could have had a much more difficult time if his ASD was severe. Now being on the receiving end of
the stares and snide remarks when he is just
ovewhelmed by the world, I’m able to
remember the 19 yr old, too cool chick who really had no clue. I am appalled at her stupidity and basic lack of human compassion to ask what was wrong and if she could help. I don’t consider my son as punishment for the child I was though. I consider him a blessing and a teaching soul to others who have the misfortune of being the person I was. I don’t always say something, I’ve learned to pick my battles, but when I do, it comes from a place of compassion for I am always imagining that 19 yr old girl who would become affected by Autism, who learned the hard way. This is her penance.
Diana, I was much the same way. Pre-kids, I had a long list of the things my kids would or wouldn’t do. Funny how Fate can turn you on a dime.
Although my children are disability-free, I care very much for people with all sorts of disabilities – physical, mental, and emotional. This post reminds me of when I myself went through two years of undiagnosed fibromyalgia and often got similar stares and dirty looks. Like, “You’re 20 years old; why are you sitting when there are older adults standing?” or “You’re asking me to move over two feet so you can hold onto the handrail as you go down the stairs?” Thank you for the reminder that not all disabilities are readily visible.
The “invisible” disorders are so difficult. I wish you peace and healing.
He is an absolutely gorgeous child! : ) Loved your article. God Bless.
Aw, thank you, Nikki!
Really a great perspective. Well written and enlightening. I loved it.
Thanks so much, Maryann!
Great post. Thanks for sharing.
Unfortunately the people who should read this post prob won’t. Hopefully they will.
Many thanks for sharing your story. Your words and writing are going to stay with me.
I get so angry for all of our kids when I think of all the suffering and struggles that cannot be “explained” no matter how hard we try and the lengths we go to get answers and the help our families need.
It is exhausting to be angry and I am SO tired.
For those of you lucky enough to find healing, I am truly happy for you and it offers some slim glimmer of hope, after so many years of seeking, that recovery might still happen for us.
Maybe you feel certain what the magic bullet actually was, if indeed there was one, or maybe it was plainly a gift from God and you will never really know for certain how recovery happened and the why is because for the grace of God your family was chosen to heal.
We have been to so many of the most brilliant healers, many the flavor of the season until the next guru comes along and everyone runs to the newest intervention without asking why the old ones that didn’t work get tossed aside at the next autism conference.
I am now an older mom. who has been there and done that, and often am treated by desperate younger moms desperate to fine ‘the one’ anything as some dimwit(I am actually considered incredibly brilliant and have logged countless hours researching and networking and advocating in all things autism and beyond and have attended countless conferences of varying kinds that are often reserved for PhDs , MDs etc only) who just doesn’t get it and hasn’t gone to the right doctors and hasn’t done all the right stuff/
I must have done this or that protocol wrong or made this or that magical healer angry for questioning to much( didn’t we all learn already that we must ask lots of ?s whenever we allow others to do anything to our families) if all we got was broke.
STOP referring to families like our as “tough nuts” F that crap!
Autism is a “too big to fail” injury that bleeds us dry of all our money, homes, and the ability to maintain some level of dignity when doing our best to provide for our families.
Forget going to Disneyworld, we have all been sent to Hell on Earth.
The banksters get a “bailout’ and “get out of jail free’ card, so do all the people involved in harming our children.
And so do the supposed brilliant healers who charged us hundreds of thousands of dollars we did not have .( no refunds for failed protocols and once you are broke you are told too bad we can’t help you anymore)
Never call outrageous charges “super bills” for me to submit to my insurance to pay because you know they won’t and there was clearly nothing “super” about your services and protocols.
All these people are living the high life at our families expense, literally.
It hurts when strangers, and people in our communities behave like “mean girls” and “mean boys’, young and old, but it is so wounding when family is just as hurtful and loaded with criticism, judgement, and expert advice but offers no actual help or hugs.
When we are home or out and about as a family the stress felt by each of us individually and as a family unit has changed our family experience. We have to try so much harder to have any fun. Tempers can be short. resentment that everything sucks takes a toll.
Anyone reading this blog is a warrior and will never give up seeking recovery for their families.May God have mercy on us all.
TTFN
Barbara Biegaj in Chicago
Barbara, I truly feel your pain. This journey is not for the faint of heart and most days I feel like I have had the complete crap beat out of me. I don’t even know how to express it to those around me. I sometimes wonder how I am not running through the streets, screaming.
The only thing I can do is fight. And I’ll fight until the last breath has left my body. I really have no choice.
Much love to you. xo
Barbara, I can honestly say I, too, hate the “tough nut” label. I have been told that very thing so many times. However, I am determined to use that anger and frustration as fuel to keep on keepin’ on. 2 years ago, Little E had maybe 5-10 words he could use. None of the treatments that had helped so many had helped him. He was already 5 years old, the “deadline” for speech. Then we tried something new and we had some gains, especially in language, but still nothing really functional. He may be a tough nut, but he’s MY tough nut. And he is as stubborn as I am. I went against logic and stopped all the typical therapies: speech, PT, OT. He blossomed. We tried a new therapy that we hoped would help his severe scoliosis. Who knew we would see great stuff? But we did.
You’re right. Most of us will never stop looking for help for our kids. Some will give in. I can’t and won’t judge. Some will succeed. I will celebrate. Some will only get so far and be content with that. And that’s okay. I value the experiences of those that have gone before me. People like you have paved the way for people like me. And I thank you.
Peace, Love and Light,
Gilded Thinker
After everything I have said, I feel no shame in asking:
What has helped the most amazingly adorable Little E most?
The love resonating from this beautiful boy is so pure and humbling You are an amazing Mom,
We all are amazing Moms for never retiring from seeking recovery and praying for miracles, who unconditionally and simply LOVES.
( I am not capable of unconditional forgiveness–the thought scares me because it sometimes DOES equate to forgetting too.
We must NEVER forget!
We must always be warriors for our own, each other, and those who are yet to come–hopefully this all will end someday soon.
But, until the evil ones stop doing their thing;
We are in charge and we must fight until we are all triumphant, until every single last living being is whole and well as God intended all of his Creation to be.
The evil is man-made.
Amen !
BB in Chi-town/Oak Park, Illinois USA
Thank you, BB. We are amazing parents because of our kids. THEY make us into the amazing parents we have become. They teach us selflessness and the purest love.
As far as interventions, we have tried several. We started with the diet. GFCFSFEFPF. We saw some improvement, mainly less “fogginess”. He went from severe constipation before the diet to diarrhea with the diet. Lots of supplements. Supplements did nothing noticeable, though. When E was 5 years old, we tried classical homeopathy. That was a big one for us. Prior to that he had maybe 5-6 words he could use functionally. “Ma” (Mommy), “Dah” (Daddy), “Bah” (bear), “doo” (juice), “no”, and, occasionally , “mo” (more). Homeopathy gave us two+ syllable words and the ability to string 2-3 words together. For E, the single biggest intervention, so far, was a surprise.
E had severe scoliosis that traditional doctors refused to treat because “he has autism and probably won’t wear a brace”, though the doctor admitted that E was probably in pain. As angry as I was at the time, I’m thankful that doctor was a jerk. I came across cranio sacral therapy while searching for help for his scoliosis. We started with a one hour session once every 2-3 weeks. After a couple of sessions, I realized E was more aware, connected. He started saying “hi” to anyone he encountered. After a couple more, we had a surprise. Keedo was being a typical annoying little brother. E started crying. I asked him what was wrong. “I want Keedo to go away and leave me alone.” Seven months into CST, Little E’s spine is almost straight, he is able to stand, briefly, unassisted, he can speak in sentences (though he can be difficult to understand at times), his auditory processing delay has disappeared, and he loves to play with his brother.
We still have a long way to go, but we will get there.
I always heard about that “window”. We all know the one. That idea that if we don’t have speech by age 5 our child will never speak or if we don’t reach recovery by kindergarten, we won’t get it. Well, I don’t believe it. We had very little progress prior to age 5 and have had much progress since.
Each child is different. Different things will be required to heal each one. As long as we keep looking, keep trying, there is hope. 🙂
LOVE THIS!! Years ago I was a care giver for a little girl with Rett syndrome and had my own disabled son same age with me everywhere I when. You nailed it exactly, the child in the wheelchair was a magnet for kindness and positive attention. The other one, the one that didn’t look disabled, caught hell. I used to get so angry inside when people would stop to speak to Amy, but chastise John for not being a better “helper” for Mom. I would shoot back, “Actually he is just as disabled, but you can’t see it.” Shut them up, but also confused them.
I hope too it is your only wheel chair, but I am so thankful for the way people are now treating him with respect…amazing…simply amazing.
Cheryl, your observations so closely resemble mine. I really thought the stroller was a good thing so he didn’t “look” disabled. I was afraid if he looked disabled, people would treat him as such and he would believe it and quit trying. It seems the opposite has happened. He gained a pride and self-respect that has him trying even harder. It just sickens me that people can’t seem to give a child the benefit of the doubt.
Thank you for telling your story. Please check out my website for our story. I am sure you have done so much testing but wonder if you have done the Epilepsy panels they now have available. So many more disorders and syndromes that they haven’t had just a few years ago! I so applaud your persistence and don’t give up looking for a cause because there is one. We have motor issues too and found inflammatory protocols to help my daughters’s intractilble Epilepsy to respond to it. Check out my facebook page – I have some articles listed there as well. Great story and thanks for telling it!
Jennifer Bertram
Love, love, LOVE!!!
Thank you for sharing your story. A little kindness and compassion go so far. Blessings to you and your family.
Thanks, B.K.! Love you, too!!
Caryn, we are about to look into the parasite angle. 🙂
My heart breaks reading this- for you and for how familiar it feels to me. My son is 35 with severe autism. Now, it is obvious to even the most oblivious people there is more of a problem than behavior but we still get the fish eyed stare. When he was young, I rarely saw another kid like him. Now, I see them everywhere. I pray to be one of the comforting, helpful ones to these overwhelmed, scared parents.
Love you, G.T.! Thanks for telling your story, which desperately needed to be told. xoxo
Thank you for sharing your wisdom. My son had significant motor/ physical disabilities that healed really quickly, although not fully, upon treating for Lyme and Babesia. We see Dr Charles Ray Jones in New Haven, CT.