Day 172: What It’s Like

I can’t remember if I had posted this or not but I had written a letter several years ago before I started blogging.

The background to the reason for the letter is as follows. The boys were in therapy and at therapy, there was a very large black book of policies and in it contained policies from where to greet the parents and children to how to handle infectious diseases and that policy probably was about half of that big black book.  They had a colour chart for the discharge from a child’s nose and #of hours after a loose BM for the child to stay home requirement in there.  It was incredibly ridiculous in my opinion especially since part of the condition of Autism involves either chronic constipation or chronic diarrhea.  My boys always had loose BMs. It took me a long time to convince them of that fact and that they were not going to give everyone in the building the runs.

Ethan had at one point gotten a hold of a toothbrush and used it as a stim toy. A stim is a repetitive behaviour a child can fixate on in order to stimulate their senses of touch or sight or sound or with a certain movement.  Ethan had this toothbrush and managed to irritate his stomach and there was a red mark.  The IBI looked it up in their big black book and informed me that Ethan had to see a doctor before returning to IBI.  I called them and told them it was from him stimming with a toothbrush.  They insisted he needed to see a doctor first.

Now seeing a doctor may seem like no problem to the average person but for the parent of a child with Autism, it is an absolute nightmare. A child that does not understand physical boundaries, has a tendency to destroy any paper and toys within seconds, who absolutely can not sit still for anything, hates waiting and throws temper tantrums for any one of those reasons and that is all before we even get into the exam room.  Add to that a physical exam where he had to sit still while being poked and prodded in a tiny room with no room to wander and I had developed a terrible dislike for doctors visits.
My dislike had nothing really at all to do with the doctor but it was awful and I avoided those visits unless it was absolutely necessary and I knew what the cause of Ethan’s rash was and thought it ridiculous that they would not take my word for it.  So in my frustration, I wrote the following letter and gave many copies of it out so that they could place it in their big black book of policies!

I am the mother of 3 “special” boys. My oldest is 8 yrs. Old and wears two hearing aids for a mild hearing impairment and is, in all likelihood, going to have a diagnosis of ADD within the next month or two. My 6 yr. Old son is autistic and is completely non-verbal and is on the most severe side of the autism spectrum. My 5 yr. Old is very similar to my 6 yr. Old except he says “mama” on occasion.
I have written this out of raw emotion and not for any literary reason except to offer a bit of a glimpse into the shoes I fill 24-7. So the grammar and English are not the best and the metaphors are poor. I hope that perhaps people who read this who wonder how I can do it or what is going on when I appear a little distant or foggy brained or cannot relate completely with the world around me, perhaps they can understand just a little bit better upon reading this.
What is it all about, being the mother of three “special” boys? It’s about meeting the nutritional and dietary needs of three very different likes, dislikes and restrictions (ie:gluten and cassien).
It’s about teaching self-help skills to children who require 100 repetitions and rewards to attain a skill that requires only 5 to 10 reps. for the average child to learn the same skill.
It’s teaching an emotionally over reactive boy how to get along with friends that have already figured out his weakness and have targeted it.
It’s trying to guess the possible reasons for a dramatic change in behaviour that leaves my normally happy, easy going boy into an explosive child that erupts into a very loud, self injurious fit that no amount of feeding, deep pressure, comfort, discipline, time outs, redirection or medicine will ease.
It is about not getting all the children settled and asleep for the night until about 10 or 11 pm, even if you begin at 8 pm. Then to be awakened to shrill screaming and stomping at 3 or 4 am and not being able to get them back to sleep before they need to be off to school.
It is spending 2 hours with my grade 3 student, constantly redirecting his attention back to his homework of one sheet that should only take 15 minutes to complete.
It is avoiding reading or seeing more news on another family’s plight so that I don’t get upset and cry about my own plight.
It is about cleaning sheets and carpets in the middle of the night because a child woke up and had a bowel movement then had a sensory experience with it afterwards.
It is averting the darting child and constantly setting up situations where I don’t have to handle two at the same time because usually one runs away or gets into something in the 20 seconds that I’ve let go to handle the other.
It’s about reading all the news of the latest treatments, vitamins and concoctions that find their way to my doorstep, mailbox, inbox or windshield and weeding out what is worth the time and money trying. It is also figuring out how long to stick with it and judging behaviours that correspond with the miracle cure.
It is about taking the proverbial two steps forward and one step back.
It’s about keeping birth dates and medical and developmental histories for each child memorized and sorted with the proper child, ready to recite on demand. Not to mention aptitude scores and how many BM’s they have a day as well as what time of day they occur.
It’s about those times when I have no choice but to take one of them to the doctors or hospital when they are sick. I am met with looks ranging from shock, horror, sympathy, disgust, surprise and helplessness from people as I try to tame one of those fits while waiting over an hour for someone to even suggest some kind of help while my child bites, hits, pushes and kicks at me out of the sheer terror of this situation they do not want to be in while they are sick and hurting.
It is also wondering who will actually misjudge the situation and call FACS.
It is about trying to balance the wonder mom act of doing incredible feats in “floor time”, potty training, cognitive development and behaviour management and giving myself some questionable “me time” so that I don’t self destruct when my husband is 2 minutes late going out the door for our appointment with the accountant at tax time.
It’s about hearing the advice from friends, family, professionals and neighbours without feeling like I am not doing enough.
It’s about knowing how many couples divorce when in a situation somewhat similar to ours and trying desperately not to become one of those couples.
It’s about trying not to ignore my husband’s needs for food and attention not to mention his need for clean and ironed clothes.
It’s about exhausting the bank account of the last $2.00 the day after pay day knowing of upcoming financial obligations before the next pay day.
It’s about wondering if a friend is criticizing me behind my back for feeling overwhelmed and basically having a “pity party” every once in a while when I’ve just about reached the end of my rope and the PMS is in full swing.
It’s also wondering if friends don’t want me around anymore because they don’t know how to deal with me and my “baggage”.
It is also about trying to be a normal woman and having fun with people so that I can step out of things for an hour or two and be that carefree 21-yr old with no responsibilities, burdens and obligations that I once was.
It is about trying to correct the things in me that are not good.
It is also about failing to do that and trying to conquer the guilt.
It’s about wanting (on the rare occasion) to get in the car and drive away but knowing that in my mind, that it is impossible.
It’s about dreaming of things getting better and then waking up.
It’s about the struggle between accepting the disabilities in my boys and loving them for who they are and wanting improvements.
It’s trying to be sensitive to friends who don’t understand and get hurt when I say so.
It’s also about not reacting to ignorant people because they are unacquainted with Autism.
It is about wondering why God thought that I could do this. I feel significantly inadequate!
It is about the characters that emerge from my guys that give me rare glimpses into their personalities. The coy turn of the head, the comical raising of the eyebrows, or the twitch of the nose that will send us both into hysterics that proves that they are not void little bodies that are completely unresponsive to the world around them.
It’s about those smiles and hugs that make me forget about everything else and melts my heart for the love I feel from that simple expression.
It’s about the hope that regardless of whether any of my circumstances change or not that I am changing and learning. My hope is that you will too!

Yup I was mad.  But I sweetened it up in the end, I think.

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Day 220 – The Wonderful World of Adult Services
Day 213 – Notes to self?
Day 208 – New Year’s Resolution
Day 180 – God Made You Special

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