Someone recently asked me,
What makes your Etsy shop different?
What makes you unique?
What sets us your shop apart from everyone else?
The answer is immediate in my head, but no one would ever understand it.
This is a hard one to explain. I have never tried. I'm unsure if I can.
I will try... I have to...
No one has a Danny.
I need to explain what he has overcome so that one can understand the full meaning of what he can do vs what he cannot.
He has overcome things in his life that most families haven't seen in their entire generation.
Danny is able to handle his autism without any behaviors! (This is something to behold - an adult with the severity level - the pain level - the dual diagnosis - no behaviors...) I have only seen this in one person with such magnitude of a challenge - that person is my son.
I knock on wood because this has been my greatest fear but yet my main goal as a parent. One that I never took lightly. Whether or not my son had a disability did not entitle him to being a spoiled brat!
I am lucky because Danny is a great kid! One that I would never ever trade with anything or anyone!
I look at him and wonder if I would be able to do the same as he. I know the answer - it is easy - No. My diagnosis of breast cancer and surgeries (bi-lateral mastectomy and radical hysterectomy) proved me correct. I would never be able to handle what my son does - with his dignity intact and with his gentle and loving ways.
Not only does he handle his autism, but he handles a dual diagnosis (shared with mental retardation) and a fragile medical system with recent added brain trauma.
Danny's autism isn't in the way that most people understand it to be. He has autism to the fullest extent possible - every ugly aspect that the worst in severity can bring to the possible diagnosis. I have never explained it fully. I have never put it in words for someone else to understand the entirety of what autism can do to one person.
-Severe eating issues/non-eating. Foods make Danny sick - a simple smell - the smell of garlic bread in a toaster oven is so intense to his system that he will throw up and his system (once started) cannot shut down. Just as you may have band-aids in your medicine cabinet - I have zofran. It helps to stop his system from throwing up. There have been occasions where I have had to take him the the emergency ward for extreme dehydration and a stronger medicine (via injection) for vomiting. We have to avoid the foods where the smell makes him have a "gag" response. There is no in between - it is a rule in this house. I never fully understood this smell sensitivity until my breast cancer experience. I get it now, I completely understand. Just as the smell of foods are repulsive, so is the sight of non-preferred food. I won't force feed him - it isn't worth it. Been there done that - feeding therapy/protocol from Children's Hospital. Nothing works like that for him. He eats between 2 to 6 foods depending upon his level of pain/discomfort level. There are weeks on end when he will only eat Pepperidge Farm brand "orange" "regular size" goldfish because he is feeling so poorly. After 18 years, I still try to feed him smooth creme style yogurt, 2nd stage baby fruit (no lumps), etc to keep him as healthy as I can. Since food is non-preferred, Danny will not feed himself. The old saying, he will eat when he is hungry enough - does not ring true for him. He literally almost starved himself when he was 5. I was trying to change his diet to gluten free foods. He chose to not eat - not out of a "behavior" but out of a "medical it makes me sick" point of view. The doctor kept saying, he will eat when he gets hungry enough. Weeks later, I was told from another doctor that I had better feed him what he likes, or he will never eat again. He lost so much weight it was sad. The reverse rings true for him: he won't eat when he is hungry enough. He would rather not eat. Food makes him feel sick. It is a 24/7 challenge to this day.
-Severe sleep disorder - not being able to shut himself down enough to fall asleep and stay asleep...I have tried it all. There is a med that is given to him in two parts every evening to try and help shut his system down so he can sleep. This was after years and years of trying many different things and years of him sleeping 2 to 3 hours per night. Just enough to rejuvenate him for another day. Once he wakes, he will not fall back to sleep. This is something that has never changed. Most people wake at a state of "3" (on a scale of "1" to "10" ("10" being bright-eyed and bushy tailed). You may stretch in bed, yawn, hit your alarm again, lie there and think about your day ahead until you get to approx. a "5". Eventually after coffee or your morning routine - you become a "7" or an "8" and by noon you are a "10". His system wakes at an "11" and he is physically unable to bring it back down to a "sleepy state" unless he is given meds. He literally jumps out of a sleep and will immediately start pacing. This leads to the next symptom of autism - anxiety.
-Anxiety - horrid 24/7 off the charts anxiety that no pharmaceutical med can help, nor homeopathic, nor bio-medical, etc. The anxiety is higher when his pain levels are higher. If he is in less pain, he has less anxiety. Some days he is in so much pain, pacing is truly the only option for him. This is painful to watch as a parent when you know you can't help in any way, other than to offer a hot bath, or a ride in the van... There are days when he may take 8 hot baths... the water is soothing for his pain. It is the norm for him to need long car rides which obviously have him stop pacing to help deal with the anxiety/pain levels. Anxiety is difficult to measure because the root may always be different or a combination thereof. Is he getting sick? Is it his head? Is it allergies? Is it an allergy headache or a migraine? Might he have had a seizure during the night? I never know.... It is always my best educative guestimate... there is a learned process... only one other person can do this besides myself.
-Lack of self awareness - safety awareness, social awareness. Danny knows his name when asked "What is your name?" But he doesn't understand his name is Danny. Same goes for his address and phone number. Age is taught for memory - every year it changes. It is unimportant. Self awareness also includes dressing, bathing, taking care of one self. The autism that Danny has, includes the Lack of self awareness. For purposes of dignity, I will stop here. I have learned that the important thing is that he is always with someone who he trusts. That trusted individual has the awareness training that they need to keep his dignity intact. Safety awareness including basic, street, fire, water, appliance, etc. does not exist with the autism that Danny has. He does not understand basic safety where he would walk away from me to get that balloon hanging on a mailbox across the street. He would go outside to get on that swing if he walked by the window and saw it - even if it meant snow outside and he was not properly clothed. He will want to go for a ride in the van and proceed to walk out the door not knowing, hence caring that he does not have shoes on, nor a proper jacket, and that he didn't let someone know that he needed a ride. He may stand at that garage door (which is triple locked) for a long time or until I realize that the family room door is open to the garage and that he is no longer pacing or sitting in our comfy rocking chair. Some days are better for him than others - he may get his "green bag" and his "brown shoes on" thereby letting us know that he needs to go on a ride. It is imperative that these safety skills be taught to him every single day as much as possible for his understanding. However, some I have not been able to teach due to "if/then" logic (crossing the street). For example, when trying to teach cross the street, I make a visual book, First "look left, no cars, look right, no cars, yes cross". If there are "look left, yes cars, then no cross, wait" or "look left, no cars, look right yes cars, then no cross, wait". This is great until someone stops and waves you on to cross. This is not able to be understood by Danny. The wave isn't concrete enough. Danny will always have to rely on a trusted individual to keep him safe and aware with his dignity intact and he will always need visuals to supplement that trusted individual to help him understand the process.
-Lack of communicative skills both in speaking (expressive) AND in understanding when spoken to (receptive)... Danny "seems" to hear Charlie Brown's teacher when spoken to... "wah wah wah wah" therefore resulting in him being "non-verbal" or not being able to speak words. The "let you know that he needs something - the I have a headache that is hurting so bad - please make it go away - but I can't tell you - ouch it hurts all day all night and upon the instant he opens his eyes - oh yes - my head hurts so badly" kind of communicative disorder. Long story short - V I S U A L S are his key to understanding our world. Once I understood that he needed visuals to be taught the connection to understanding spoken words, or processes, his early behaviors went away (paired with understanding he had pain as well). Visuals, visuals, visuals equals dignity. If someone, or a system takes away the process of visuals for Danny, that takes away his dignity as a human being. This needs to be a separate post alone... the importance of visuals. Just as we use words - Danny uses visuals. Just as we need air to breathe - Danny needs visuals. When I ask him to get his coat and put his shoes on he may ignore me or just stop and stare. He does not understand. If I show him a visual (a computer program that when typing each word, a small picture shows above each word spoken), such as Danny get your coat and put shoes on, he immediately does just that. A due process with our school district that lasted years - took so much energy and resources to prove that my son needs visuals and honest communication in an everyday environment with a trusted individual. Hindsight - it wasn't worth it. I ended up homeschooling him anyway. It wasn't worth it.
Add a 'profound mental retardation diagnosis' (using this term strictly as a medical diagnosis) - one that is based on IQ of less than 45 (correct me if I'm wrong for profound) - or perhaps "untestable". A diagnosis that brings with it the yearning to learn on days when he has no pain. A diagnosis that is able to be taught using visuals and broken down steps, but once taught, immediate loss of that particular learned thought or skill. This ugly 'profound' diagnosis brings a moment of understanding to an immediate all-knowing feeling of confusion and sadness. The different parts are all in the brain, but the level to which he has, these parts are never able to be connected. They are fragmented. Useful fragments of information that remain segregated. When these fragments of information overload, the dumping begins, or that of a regression. The regression turns to sadness. He knows that he once knew this, he knows that he doesn't understand it for whatever reason. Notable regressions that were recorded in his 18 years, were 9. There were nine huge regressions. Ones that are listed as "unidentifiable in cause". The end. The end? No - Danny and I have picked up every single piece nine times over. He has relearned skills over and over again. It is with his dignity in mind that I need to teach these skills differently each time. I can't use the same technique or materials as before. He knows he learned them - he hates the previous learning materials by now because of how long it took for him to learn them. Each piece is picked up. One by one - painstakingly by my son. He works so hard. I have never seen anyone work harder than my son, ever. That includes my husband who is a workaholic. He is 18 now so things are different. We take one day at a time now. We pick and choose our pieces that we need to pick up and keep under a "maintenance" type of schedule. Danny is so brave. He never gives up. He holds his sadness in 99% of the time. There are those days when he will cry, I see the tears well up in his eyes and it makes my heart ache. There is a feeling of sadness that compares with a grief felt from an immediate family death when this happens. It is the worst kind of feeling to see him well up and then eventually cry. When he does, I cry with him... I then keep his braveness in my mind and I somehow gather up the courage to talk to him. I tell him, "It is ok Dan. You can cry. I don't blame you. I would cry too. It must be so hard to do this all the time. I am sorry, so sorry. I wish I could make you happy right now. You will feel happy again." Speaking calmly, slowly, still crying, my head aching, my heart bleeding. I continue on in words that I choose carefully so he will understand as best as possible with visuals that have been once taught, "I love you Danny. You are so brave. You are the bravest in all the land. I love you so much it hurts. Don't give up honey. Never ever give up. We will take it one day a time. Mommy loves you so much. You are so brave." I continue until his heavy sobs stop. I never ever stop talking with him and gently tickling his fingers or hand until he is somewhat soothed. I don't know why, but it is an innate thing within me, an instinct if you will. He eventually soothes. It is those times that are the worst - the most draining. I might have thought in those younger years that my teaching skills were evolving. The opposite is true. I am the worst teacher ever. I have learned because of my son. Danny is my best teacher ever, EVER. I understand because of him. I am unsure if I can express the words to have you understand the depth of what I am trying to communicate with my thoughts here...
Enter - "the dual diagnosis - severe autism/profound mental retardation mix". This is where every second of the autism fights the mental retardation and every ounce of the mental retardation fights with the autism. This is the ugly part. This is the part that have most people, professionals and some family say "place him in a residential facility" or institution. I am told that he will be better off, in his element, he will be happier and knows no different. This is the part where the insurance company doesn't approve the entire ten days of antibiotic, only five. Why? It doesn't matter. Why would speech therapy be approved for an individual who is 18 and has the dual severity of both diagnosis? They write, "because there is no reason why we should approve services because he is 18" or another words - he is just a "throw away" in the system. Denial after denial, insurance, doctors, specialists, it is all too much for a soul to bear at times. He hears - he knows.. somehow he knows.
Never ever forgetting his fragile and painful medical system, one that keeps people judging with a sharp finger because he does not use a wheelchair, he moves and walks without one. His underlying human anatomy is 24/7, always, contantly in pain: severe allergies (11/12 months of allergens), immense upper/lower gastro-enterologic issues (reflux, ulcers, swelling, bloating, constipation, bleeding, pain from the esophagus to the stomach to the intestines to the #2) , ear pain, ear infections, super sensitive hearing that brings about intense pain when hearing a tiny newborn baby cry, the skin rashes which bring on sensory issues which make him feel like he wants to crawl out of his skin, and the worst headaches I have ever seen in my life. One that makes him stop dead in his pacing - to rub the front and the back of his head to say "boo boo ouch". The headaches from hell - the lets try motrin, tylenol, alleve, dye free ibubroprofin, excedrin, aspirin, bio-medial techniques, nothing works headaches from hell 7 days a week morning/noon/night... I will never forget the grand-mal seizure that Danny had a year ago that made him stop breathing, turn grey, for what seemed like hours, but lasted 6 1/2 minutes. I turned into a machine, mouth to mouth, coaxing, begging, it was all a big blur, but God was there, and Danny turned pink again in my arms. I swore that I would never ever complain again. Never was I so thankful in my life to have my son. I promised God I would never ever ever think a negative thought about my son, ever. I was Blessed to have him. It was then I realized the tables had been turned. I thought that Danny could never live without me. Truth was, I could never live without my son.
The medical pain that Danny deals with on a day to day basis would bring about violent behaviors in individuals who have communicative disorders such as he has. Not my Danny. He is such a well behaved young man. I am so lucky. He has learned to deal with his pain - he paces, he needs long car rides, he needs frequent hot baths. Driving in the car vs pacing soothes his pain. Hot baths must numb his pain for a temporary period.
The only thing he does - is the "scream".... When things happen that he doesn't understand snowball with existing pain - if his CD player breaks, if the television stops working, if it is a hot day (over 100 degrees) with high humidity, he will become extremely frustrated - these are the things that Danny doesn't understand. These are factors that take him to a state of overwhelm. If that cd player needs batteries (breaks in his mind), he screams - the scream that makes the hair raise on the back of your neck. The kind of scream where when done in a restaurant full of bikers, and one exclaims, "Holy hell - if you could bottle that and sell it" to the entire restaurant, the kind of scream that stops everyone in their tracks for a mile radius to turn and look because they have been scared beyond words.... yup, that is it. That kind of scream. That is it... That is my Danny. That is the only negative that he brings to the table. I wanted to crawl under that table in the restaurant that day. At present, the "scream" is still as intense and it horrifies as well as scares me. People have not been shy expressing their feelings if this happens and we are in public. It is extremely difficult during these intense challenges
I have never communicated to anyone in full, the extent to which the severity of the diagnosis' brings to my sons life. I haven't talked about the deepest wells of severity because his dignity is very important to me.
If for some reason my son is ever upset by any of this, it was written without any intent to harm him. I write so that one can gain a deeper insight into what a person can do in lieu of what one can't. I realize that this is what sets our shop apart from anyone in the entire Etsy community - my son Danny, who is my everything.
My son loves to string beads! He is amazing to watch! Danny makes these happy noises where one day technology will be so great that when you read this sentence, you will be able to hear his happy noises in the background. Those noises - are my reason for existence! I wish you could feel the joy that I feel when I hear those noises. There would be no war, no hate, no crime, only joy. Through all of his pain, there is joy and he shares it through stringing beads, through conditioning clay, through rolling clay through the pasta maker, through sprinkling mica powder on a piece of scrap clay to see it sparkle. He loves to work using his hands in this way. This Etsy shop was started for the very reason: to celebrate what Danny can do vs what he cannot.
My son, my mica, my precious gem. You are the vein of my existence.
No one has a Danny in their that in their Etsy shop, like we do!
I love you Danny.
Thank you for being my hero.
Did I explain it? Did I communicate what sets our Etsy shop apart from everyone else?
If I did, I am thankful because this was the most painful thing to write. It took 18 long years
of living, loving, grieving and accepting.
Thank you for reading.