When Protecting Your Child With Autism Is Misunderstood
It seems that we as parents of complex children are judged at every turn. But there is no judgment more supreme or detrimental as a letter from Children and Youth Services—a letter detailing you are under investigation by the government because someone in the world, as an outsider looking in, has viewed your parenting in a negative light.
This parenting journey is not the easiest—it’s a passage of parenting unlike any other with endless twists and turns. A voyage that at times submerges one into a very dark and isolated place, while at the same time, escalate a parent into the highs that all the first moments in a child’s life bring.
It’s a stressful expedition that has the ability to end our marital relationships, and it is a test that can strain our family relationships when there are differences of opinion on how to raise such a complex child. This journey can also put a hindrance on any and all friendships because of the increased complexities involved in a parent’s daily emotional schedule. It’s a parenting journey that most would not and could not understand, unless they, too, were on the same path.
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 put on hold for the good of the child, as sleep is lost, and parental exhaustion sets in.
Yet, life doesn’t stop! Groceries still need to be picked up, food still needs to be prepared, baths still needs to happen, children still need to be dressed, the house still needs to be cleaned—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. 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. This letter from Children and Youth Services adds another factor of stress into an already overfilling parental cup of to-dos.
Social workers are now in charge to visit and analyze every aspect of a caregiver’s life to form a conclusion whether or not a child is being treated fairly—in their opinion. In the following days, every aspect of life is brought into question.
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.
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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 to be 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 our 70-pound son throwing himself 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 clench my fist, digging my nails into the palms of my hands, so I do not for one second lose my emotional control.
I must be strong when all I want to do is fall apart and crawl into my 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 choose 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 of how this situation looks to spectators.
In the 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 of catching you would see him fall to the ground and the near-endless screaming would begin. Though now, instead of being inside, we are out in the open. 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 them by standing observer.
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. We can prepare our son countless times with social stories and explain what will happen next 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.
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At 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 three-year-old. Either way, I suffer because I can appear only in two distinct ways. In the first scenario, I am the lax parent who allows my son to treat my daughter with an intense amount of disrespect or I am the mother who uses this as a teaching moment which is perceived as an argument as my son visibly resists.
While I correct him, I must knowingly understand that he may collapse to the floor and I must be quick enough to shield them behind myself as his arms are swung in all directions.
We, as parents of children with 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.
- Raising a child that requires you to be 95 percent dismissive of any of your own thoughts, feelings, drives, desires, intentions or actions?
- Not being able to vocalize one sentence, during a meal, without being interrupted, corrected, or the topic changed by your child?
- Not being able to hug your child without analyzing the correct pressure that you are giving and/or asking if you can hug them first, so you do not upset them?
- 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?
- Hearing speaking during every moment of your day from a child that needs to vocalize every single thought that comes into their head?
- Having your entire day scheduled meticulously so as not to surprise your child and cause a meltdown?
- How many things I, as a parent, must do at one time?
- 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?
- 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?
- 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?
- 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 himself/herself in our own shoes I believe most allegations would disappear.
I wish they would consider what happens to the children who are removed from the care of their parents. The only immediate option is foster care. Is there someone out there who can care for my special needs child better than I have learned to in the last 10 years? As a parent who 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, 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, a report filed because someone out in the world felt bad for my child can derail my entire child’s life, my marriage, my criminal record, and my family’s sanity. 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 increased restraint for their own safety, special consideration must be performed by the utmost of loving parents.
While we truly understand that in this harsh world there are individuals out there harming children, please look at the parental love, the dark circles under a caregiver’s eyes, and the scars many of us received as we try to keep our children safe. Please see us as 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 when a report is filed, a parent is guilty until proven innocent. All it takes is one social worker and a misunderstanding to judge our lives in a negative light during an intense moment or an off day, making our child’s entire calm and predictable world irrevocably ruined for the foreseeable future.
This article was featured in Issue 88 – Knowledge is Power