Monday, November 18, 2013

A Glimpse Into His World

Written by Genevieve Elias

Originally Posted on Coloring Outside the Lines
This week has seen a flurry in the Autism community in response to a piece written by Suzanne Wright on Monday November 11, 2013 - the eve before an Autism Summit in Washington D.C.  It got me thinking about the past seven years as I have experienced parenting a child on the spectrum.  After a week of introspection this is what I have come up with:
My son is a study in contradictions.
He loves to snuggle, give people (even random strangers) hugs, and is constantly touching anyone within his sphere.  However, you need permission to be in his bubble, he has to be in a mood for us to give him hugs, he hates having his head touched, and don't even try giving him a massage - they hurt.  BUT, he sleeps under a ton of blankets, loves to be squished between bean bags, and swing or rock.  
He struggles with receptive and expressive language, yet his facial expressions speak a thousand words.  Although he is fully verbal and for the most part can tell us what he wants there are times when he talk in circles and his conversations don't make sense.  Other times he busts out with a song like  "Onomatopoeia" out of the blue and will then sit for what feels like an eternity as I show him videos with examples of figurative speech.  (He must be learning about Onomatopoeia at school today, it was a phrase that came up quite often before he headed for bed.).
He loves to watch "My Little Pony", "Sophia the First" "Thomas the Train" and "Chitty Chitty Bang Bang" but not if they are too scary.  then again, it doesn't bother him to pretend to play zombies, or shooting games no matter how many times they have been banned at our house.
He will spend hours playing with his trains, building tunnels, drawing pictures of amusement parks, trains, planes and automobiles.  However getting him to sit for fifteen minutes and do a math page is like pulling teeth - unless you use manipulatives, then maybe you can get him to sit for twenty minutes (more like stand, or swivel on a wheelie chair).
His normal talking  voice is what everyone else uses as an outside voice, yet his sisters sweet little voice often sends him into tears of frustration as he screams "You're hurting my ears."   
He is afraid of jungle gyms with bridges, but adores fast roller coasters and monkey bars.
The first way you do something with him is usually how he wants to do it for the next million years, and if you change things you have to let him know ahead of time and predict with him about what things will look like.  On the other hand he loves to be in complete control of his environment and even though he knows the routine at school he will negotiate every last task.  His teachers are learning that not negotiating with him is an exercise in futility.
My son faces an obstacle course each day.  Each day the path changes.  Some days are easier than others.  I know that what my son struggles with is no where near the struggles of other children facing the challenges of more severe autism, but in our family's situation I have to disagree with Suzanne Wright.
My family lives!  We live moment to moment sometimes - and other times our lives are very scripted and routine-istic.  I don't live in despair, but I do have some fears for the future (I don't think I would be a mother if I didn't).  As a mother I do have my good days, and bad days.  I also have them as a wife, a friend, a sister, a daughter.  Some days I am emotionally, physically and mentally depleted - but so is every other human being on the planet.  We all have bad days, and to be honest I think we have more good days then bad.
Yes, I still have to buy pull-ups - and he still has to have an extra pair of clothes at school - but you know what that is okay, and each time he has an accident we quietly move on and we don't make a big deal.  HE MAKES a big deal when he realizes that he had a dry night.  We let him lead, we will follow.  
No, we can't afford those costly trips to the doctor that specializes in autism, and we worry about how we can afford the occupational therapy that he needs for sensory regulation, thank goodness he gets speech therapy at school and that there are programs out there like Touchpoint Autism Services that provide ABA therapy for my kiddo (and give me some great strategies). Yes, we have been on waiting lists for things - but it teaches us patience.  I wish our insurance paid for everything - but they don't pay for everything that I need for my own physical ailments.  This week I will be attending another IEP meeting to fight tooth and nail for my son to get the services that he needs.  If he doesn't get what I feel he needs, than I will continue to advocate for change and supplement what he isn't getting at school at home.  (One of the blessing my kiddo has from having a reading teacher as a mommy.
The other day my husband and I had a heart to heart talk.  He said "Let's face it, we need help."  We need emotional support.  We need to be in a better financial place (but that is driven just as much by the economy as it is driven by the cost of supporting our son), and I would love for my son to have better access to therapy.

Most importantly my son is not lost.  He may sometimes appear to be lost in his own little world at times, but he is slowly letting us in, and catching glimpses of his world is miraculous.  I'd like to live in his world more often, to be perfectly honest.  I have Specific Learning Disorder.  It took me a long time to learn how to read, and I needed someone to show me unique ways of processing information.  I'm grateful for learning how to overcome my struggles.  When I look at my son I wish that he didn't have moments that completely debilitate him emotionally, I wish I could make things easier for him - but then I am reminded that through our struggles and weaknesses we become stronger.  That is even more so in regards to my son.  For every debilitating factor he struggles with there is so much more weighing on the positive side.  

7 comments:

  1. This post is so much like my world with two children on the spectrum. Everyone needs to understand all these children need is love, encouragement and acceptance. They are not some freak of nature. ASD children need to be encouraged to overcome, not succumb. I would challenge parents to encourage your children, yes IEP's need to be in place however we need to expect our child to be a success. The IEP is there in case the child needs extra attention, not to depend on it entirely.. I will say also, FAITH in God has helped me overcome many of my own fears and hopefully has been instilled in my children. You see, with God all things are possible.

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  5. I am Sophie from Canada, I once suffered from a terrible and Chronic autism ,since i was bone , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this illness was really terrible especially when am going out with my friends, i have this constant disorder for about 31 years which result to epilepsy, this was really a terrible ailment ,on thin one day that i was going through the internet,and i came across a post of Mrs Kate on how his son was been cured from autism through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it for 1 months and two weeks as prescribed by dr williams and i was totally cured of autism within those week of usage,on thin now i have not experience any sign or characteristics again . for more information you can visit his blog autismepilepsy.blogspot.com for help

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  6. As a sign of gratitude for how my son was saved from autism, i decided to reach out to those still suffering from this.
    My son suffered autism in the year 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have difficulty with communication, , and he always complain of poor eye contact . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to autism . I never imagined autism has a natural cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months time he was fully okay even up till this moment he is so full of life.autism has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my story

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  7. Doctor Williams Natural Cure to Autism,I have ever prayed to share my testimony so others would read and have a reason to fight on for there sons. I know you receive hundreds of testimonies; I pray mine will be published one day.I was a High School teacher until my retirement from classroom.

    Back when I was a teaching, I prided myself in my excellent memory.my son Having the ability to recall facts, speak eloquently, and mentor others, was all I lived for. my son was having a nice life, life was going fine until one day I noticed that my son memory wasn’t what it used to be. he was struggling to recall and retain facts. This was what he did with ease. he struggled to increase his study time and pace, because he felt he was not doing enough. As the year progress, he discovered that the more he studied, the less he recall. we all thought It was something normal, he had spent part of his life sitting down reading everything on ink and print. As time progressed, symptoms became frequent with other complications. As a result, I visited my doctor who advised I should visit a neurologist for my son proper diagnoses.My visit to a neurologist proved he had what is called classic" autism . Well before them, I have heard of children with autism, but classic" autism wasn’t a familiar word I had associated with autism. I went for further search in the internet; talked to doctors I know and even talked to autism foundations to broaden my knowledge of what my son we be facing.
    There were lots of constraints living with autism. he had to abide with certain do’s and don’ts he wasn’t used to. his autism were getting worst. Phonation and other drugs which are Anti-autism drug were prescribed to try and stop his speech delay, but none proved suitable. Instead his liver reacted badly to the first drugs. The second drug failed to control the autism. he began to feel very dejected and for the first time started to feel depressed.On these autism days of his life, i took care of me son, drove him around and ensures he stayed on his meds.

    I was told by my doctor never to take a single break without him taking his meds. Hell! I obeyed. I don’t want anything to happen to my son. But ironically, these Conventional Medications were killing him base on the side effect. I know they were,but was afraid of stopping it so the condition wont get worst,In desperation, I started visiting neurologists looking for a cure. Because he had stayed on these English medications long enough and he have not gotten a cure except more complications.

    I wanted other natural alternative devoid of side effects created by Phonation and other anti-autism drugs. Well, my search continued until someone suggested Herbs as a better alternative to treatment. But what do I know about Herbs, I am not an Herbalist so I know little about Herbs. I did more findings on various blogs where I saw lots of comment where people shared testimonies’ of being cured from autism , Herbs had cured people diagnosed of autism, so mine son won’t be an issue.I needed to get Herbal medication for my son autism. So I read a lot of blogs where people who shared their testimonies kept mentioning WILLIAMS Anti-Autism Herbal medication. I searched for a blog on Williams didn’t find one. I just followed the email address of Doctor Williams that was shared on these testimonies; I got lucky when I got a reply from Dr. Williams on how to get the medication from his customer service, I followed his instruction, which my son use in less than 1 months, his frequent autism reduced drastically. Within a period of 1 months, he was cured. I went back to my neurologist, where my son was checked up and marked autism free.Long story right… I can’t say all this in 10 lines, but if you are reading this, I want you know that Williams is the main drug for you in the cure for autism. It worked for my son; I believe it will work for you also. for more information on how to get his product you can email Dr Williams on drwilliams098675@gmail.com

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