• Janele Hoerner

The Supreme Judgement of Autism

It seems that we, as parents, of these complex children, are judged at our every turn. Though no judgement is more supreme or hence detrimental as receiving a letter in the mail from Children and Youth Services. A letter detailing that your family is now under investigation from the government because someone in the world, as an outsider looking in, has viewed your parenting in a negative light.

A parenting journey that is not the easiest, a passage of parenting unlike any other, with violent twists and turns. A voyage that at times submerges one into a very dark and isolated place though can at the same time, escalate a parent into the highs that all the first moments in a child’s life bring - months and sometimes years too late. An expedition that has the ability to end our parental marital relationships with the added pressure upon both couples shoulders. A test that strains our family relationships as differences of opinion occur on how to raise and correct such a complex child. A confused journey that puts a hindrance on any and all friendships because of the increased complexities involved in a parents daily emotional schedule. A parenting journey that most would not and could not understand, unless they were on the same path, with their very own special needs child, with Autism.

Though all of those feelings and thoughts spiral in one’s head as they hold in their hand a letter that states that if this agency deems appropriate - your child will be taken, unwillingly, from your custody. At this point, the ball has already been set in motion for a stranger to watch, to observe, and to ultimately judge a parents actions of their said child/ren.

Even though raising a child with typical needs cannot even compare slightly to the sacrifices that parents make in raising these atypical children, we are still judged in the same light. All it takes is one escalated social appearance for that parenting to be judged poorly based off of exhausted parenting attempts. It is no surprise that in raising a child with special needs most parental needs are usually sacrificed, most - if not all - relationships are placed on the backburner - for the good of the child - , and time is stretched thin - as sleep is lost and parental exhaustion sets in.

Yet, life doesn’t stop! Grocery’s still need to be picked up, food still needs to be prepared, baths still needs to occur, children still need to be dressed, the house still needs to be cleaned, and the list never ends. Except now - the list of caregivers has grown shorter – if one even exists at all - , a staggering amount of appointments are added to the schedule, money is spent more quickly, time is consumed on countless endeavors to help a child feel more comfortable, and parents irrevocably are stretched unquestionably thin. All of the intentions of serving without receiving anything in return, are pushed and pushed and pushed - until a parent cannot take anymore - and they just need their own recollection time. In addition if a two parent household exists even more strains are added as these parents, both running on exhausted attempts, have a disagreement on how parental responsibilities should take place.

So ultimately, in an object of complete necessity, slight corners are cut or sometimes rounded so that life can be more manageable. Although all those things that have been placed on the backburner, out of personal necessity, are brought into the extreme forefront, as the letter received from Children and Youth Services adds that additional factor of stress into an already overfilling parental cup of to- do’s.

A social worker will now be in charge to visit and analyze every aspect of a caregivers life to form a conclusion as to if a child is being treated fairly - in their opinion. In those and the following days every aspect of life is brought into question as a parent truly sees all of the ways in which one can believe abuse is occurring on their child. To the average outsider abuse seems to occur almost hourly in our lives and homes.

In our own situation we must hold the utmost emotional control as our school aged child attempts to argue any and all requests that we make. We must stay strong through the meltdowns that bring a growing child, almost pre-teen, to the floor with the highest ear piercings screams - multiple times per day. Even though it seems as if we can avoid taxing tasks which incur additional stress to our child, it is the daily ritualistic ones that most people take for granted such as brushing teeth and showering that bring the most pain into our young son’s life. Yet regardless of his special needs - we still must insist and aid with these obvious tasks that need completed daily, no matter the justifications screamed at us.

Life is brought to a screeching halt the minute our son with High Functioning Autism - with the near genius IQ - enters a situation he does not like. No matter if the request is washing hands, homework, a shower, or brushing teeth more times than not he believes his opinion is greater than his parents. This leads to his 70 pound body being dropped – by his own muscles- on the hard floor. Countless times in the middle of preparing for school, dinner preparations, dinner, and/or bedtime, I must escort my other little ones to a safe room of the home, leaving them alone, to hold my oldest child down so the thrusting of his body does not lead his head to hit a cabinet or the floor while we attempt together to calm his frustrations. Many times I must literally clench my own fist, digging my nails into the palms of my hands, so I do not- for one second- lose my own emotional control.

I must be strong when all I want to do is fall apart and crawl into my own bed. In those moments there are no words, no ability to reason, there is only my stronger body weight against his - that calms his restless, angry mind to a state of control. Those minutes can sometimes turn into hours. In those moments I must make the choice to help my son calm himself or to leave his side and keep my other children safe and calm. Though at least in those moments I am thankful that this display of emotions is in my own home away from the judging eyes of onlookers. It is not a situation in which I believe leads someone to see the loving calm that I wish and attempt to provide, I am fully aware how this situation looks to spectators.

In the time period that is scheduled for my son’s outside time things function a little differently if a meltdown occurs. If in fact, you were to stumble onto our street, and watch this child in our backyard, you would see more times than not, many things that can be perceived negatively. If my son is outside and a swing was taken, that he already decided was his, or a football was intercepted, that he believed he was deemed worthy to catch. You would see that his body would forcefully be thrusted to the ground and the near endless screaming would begin. Though now, instead of being inside, we are out in the open of the public eye. It may seem that I was right beside him when this incident occurred, but truly I was not pushing him down, I was trying to use self-talk to help him out of his meltdown as I attempted to guide him to a safe spot with my hands. It may seem as if my husband is screaming at him though what is really happening is that my husband is attempting to have our son use his own feet to walk inside instead of having to carry him like a baby in the house and he must be loud to be heard over the screaming and violent arguing. We have neighbors that can easily judge rather than sympathize with the situation of our predicament and at times we understand how our situation looks to the by standing observer. We seem to be loud, controlling, obsessive parents who attempt to be a “helicopter parent” and yet, we have no other choices, when it comes to raising a child whom disregards safety as a priority.

This situation is most-defiantly quadrupled, if we are talking about a family birthday party, holiday, or simply a grocery run- because my husband is out of town and we need food now rather than later. We can prepare our son countless times with social stories and what will happen next in the following days and hours and yet when his threshold is reached the meltdown will occur no matter the situation. These are the moments where life comes to a screeching halt and I know that everyone’s eyes are on us, as the boy holding the bag of lettuce, with the headphones in his ears, suddenly screams at his little sister because she walked in front of his path, on her way to the apples.

In that moment I can choose to ignore this behavior, to keep the peace, or I can attempt to help him understand that he cannot scream, in that tone, at a 3 year old. Either way I suffer because I can appear only in two distinct ways. In the first scenario, I am the lax parent whom allows my son to treat my daughter with an intense amount of disrespect or in the second way, I am the Mother who uses this situation as a teaching moment which is perceived as an argument as my son visibly resists. While I correct I must knowingly understand that his body may in fact collapse to the floor or I must be quick enough to back away my little ones and shield them behind myself as his arms are swung in any direction around him.

As you can see and understand, I must possesses the utmost of control at all times in order to aid, control, and restrain my oldest child, whom does not appear to have a special need in the least bit physically, only an immense attitude problem. To the observer I am the failure and I must take that judgement with a grain of salt. In addition constantly being aware that at any moment my actions can be passed on to the ChildLine or Children and Youth. Regardless in those intense moments of heightened anxiety all that matters is reestablishing the calm for all of my children.

As a result of this tumultuous relationship most moments I can hold it together though there are times, in which the stress is quite quickly escalated, and I can no longer respond in a tone that most deem appropriate. There are times where I desperately desire to say goodbye to my 90 some year old grandparents without sighs and comments of disgust while walking them to their car because this might be the last time I see them, or the phone will ring and I will need to answer it, without warning my child that I am going to take the call - because it’s the doctor and on the last ring, or when my husband has been away for three days and I haven’t slept because of countless reasons and we must to the doctor because someone is sick and there is no choice, but to break schedule.

We, as parents - with a child that has Autism - hold in a lot! We hold our emotions in control most moments, but we are human beings too and if we are going to be judged and have the finger pointed at us, many important points MUST be considered from the judging prospect.

Can you imagine raising a child that requires you to be 95% dismissive of any of your own thoughts, feelings, drives, desires, intentions or actions?

To elaborate further:


Can you imagine not being able to vocalize one sentence, ­­during a meal, without being interrupted, corrected, or the topic changed by your child?


Can you imagine not being able to hug your child without analyzing the correct pressure that you are giving and/or asking if you can give them a hug first so you do not upset them?


Can you imagine not being able to go to the bathroom during your child’s waking hours because if you do, some child can be severely injured in the one minute of your absence?


Can you imagine hearing speaking during every moment of your day from a child that needs to vocalize every single thought that comes into their head?


Can you imagine having your entire day meticulously scheduled so as to not surprise your child and cause them to enter into a meltdown?


Can you imagine how many things I, as a parent, must do at one time?


Can you imagine not being able to speak to your spouse when you need or want to say something because your child will not let you get a single thought into words?


Can you imagine not being able to go on a single vacation, have a day of relaxation, or fun family adventure because your child can not handle the upheaval?


Can you imagine not being able to leave your child with a single caregiver because they will be returned to you in a state of such overstimulation since your schedule will not be followed and TV will become the primal source of entertainment?


Can you imagine what raising a child with such immense needs does to any of your emotional relationships, but most especially your marital one?


If the person judging would attempt for one moment to try to place themselves in our own shoes I believe most allegations would disappear. While analyzing some of the ways in which I have sacrificed every desire, dream, and hope that I ever had for having a child a person still feels the need to report a parent for the scene with their child there are still additional factors to consider.

Think about what happens to the children who are removed from the care of their parents? The only immediate option is foster care. Do you feel there is someone out there in the country that can care for my child better than I have learned to in the last 10 years? As a parent whom has had her own foster children and has heard of all of the stories about foster parents requesting children be removed from their own home, for their own abuse stories or because they just could not tolerate them any longer, consider who would have the emotional control to tolerate a child with this level of intensity. Do you feel a stranger with only a few months of governmental training could factor up a better situation for a child with special needs?


You see, that report that just occurred because someone out in the world felt bad for my child - has the ability to derail my entire child’s life, my children’s happiness, my marriage, my criminal record, and all of my families sanity. It may seem as if it is a service to the child though having a parent attempt to correct and love their child in the ways in which they need cared for can sometimes be uncomfortable to watch. So unless an individual is willing to offer their services and ask how they can help a parent in the moment – in a very kind way, or have seen a child with a broken bone that you witnessed the parent breaking, or have witnessed the signs of sexual abuse in a child, or know of some realized inappropriate actions without the loving intentions behind them, then please just offer up a prayer for that family instead.

Parenting is an incredibly rough job when raising any child and while we all understand abuse is not something to be taken lightly, just remember that the word is thrown around quite a bit in our society unwarranted. Yes we need to be immensely careful so that another is never harmed, but when a special needs child needs the extra restraint that typical children do not – for their own safety- special consideration must be performed by the utmost of loving parents. We cannot have a wardrobe full of shirts that explain our child’s condition. In addition most individuals do not want to have a branding mark slapped on the front of their shirts with their conditions listed for the world to see.

Although we truly understand that in this harsh world there are individuals out there who are harming children for various terrible reasons. Please look the parental love, the dark circles under a caregivers eyes, and the bodies of the caregivers which have scars from restraining their own feelings to see that we are only loving parents attempting to help our child learn the basic features of life before we will no longer be around to help them. Please understand and know that as that phone is picked up and the judgement is made in the most supreme way, under the jurisdiction of Children and Youth Services a parent is guilty until proven innocent. All it takes is one social worker to judge our lives in a negative light during an intense moment or off day and our child’s entire calm and predictable world is irrevocably ruined for the foreseeable future.

 

 

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