autism community floral headerIt’s a sad thing, but I find the most criticism I receive about parenting is from people from the ‘autism community’. I recently received a comment on my post about a group home for our son that was short but cutting. Every once in a while, despite my disclaimer that negative comments will not make it through and will go straight into my trash bin, someone decides to put one through anyway. Most likely it’s just so I will see it. After this comment was made, I broke my rule and approved it to post…with a reply. It was a comment that represents a general viewpoint that I receive in the majority of my negative comments; a view point that I am a bad parent with my bad parenting choices, and that the person commenting is a way better parent than I.

Here was the comment:

You have to give up your child to a group home? That is something so unimaginable to me. My severely autistic, non-verbal son will never know what it is like for his mother to abandon  him.”

…yikes! And, ouch!…

 

Here is my reply:

I normally don’t approve negative comments to appear on my blog because I have many readers in a fragile emotional hard place, and I see and know negative comments as very harmful. They, in my opinion, serve no productive purpose other than to let the commenter boast and make them feel falsely superior while exercising falsely satisfying judgement. That aside, I felt the need to respond to this as most of my negative comments revolve around this line of thinking. On to my response.

I am honestly very thankful that you will be able to keep your son with you forever. It is a blessing and I pray that you will be reminded of that blessing daily. I am not in that same place. I wish I was, and I wish you could see how hard our family and I as a mother try desperately to keep him with us as long as we can.  Memories with Mommy

You may not realize that the picture on this blog post is of my son…5 years ago. Before puberty which made him grow to over 5 feet and over 115 lbs. He was always on the aggressive violent side, but since puberty has set in, his violence has dramatically increased and has on a consistent basis, more than just periodically, become dangerous and injurious. If you want to see a small example I would direct you to my post, https://www.thestayathomesoprano.com/2016/03/21/autism-not-make-bad-person/, where I include a picture of just one of the bruises that was on my body at the time.

I have two other children in my home, one being as little as three, and I have to think about their physical and emotional safety. I also have to consider the safety, physically and emotionally, of my son once I am gone. If he stays with me until I die, his transition away to anything else will most likely be crippling. Group homes are not to be confused with cold institutions or asylums. They allow productivity, creativity in expression, freedom, and allow them to feel empowered by a sense of independence.

I do not come to this idea of placement in a home lightly. I have exhausted every thing I have access to. Our last resource is our behavior consultant that we hire, at no small expense, as well as personal in-home care workers to help us set up our home to get us to be able to provide as much of the structure we can compared to the school he goes to, which has more staff, energy, and knowledge than we do.

My house is locked up with about $500-$600 in locks and specialized safety equipment. When he has gotten away from home, it was because he can hop over our 6 foot fence, and sometimes he left right after getting off his bus.

In response, we have obtained bids for replacing it with a taller more secure fence…The cheapest bid was $9000 because we have a larger back yard. When he has run off, I am always with him because I realized within 30 seconds that he was out, but because of his size, without help I am unable to get him home safely.

This is where the police have had to help. They are amazing people who are villainized and underappreciated. In one occasion, I have had to throw myself out in traffic in front of cars to protect him. Yet when many have advised me to let go and place him in a home, here I am, still with him in my home and each day just fighting for one more. I do not come at this future decision flippantly or lightly. I have a handful of experts, some with the government and some private, who see my situation and echo my concerns and my heart to keep my son with us as long as possible, but also see the reality of the situation.

autism community flower picYou see, just because you have a child with autism, doesn’t make you an expert on anyone else but your child. Severe and non verbal can cover a wide range of life situations. It just isn’t fair or kind to judge. It especially isn’t kind or fair (to put it nicely) to chastise and condemn others with insulting verbage (“abandon”). See, you are only abandoning your child if you drop him off and never come back. Just like sending your children off to college isn’t abandonment, sending your child to a safe empowering living environment to gain an improved life isn’t as well.

I have given my all physically, emotionally, socially, and mentally to keep my son with me and my family living under one roof. I have given everything until I honestly thought I can’t go another minute. It is beyond unfair to judge or use hurtful words to say I am abandoning him. I would caution you to think before you comment in the future. If you think there is a possibility that a positive comment you make can be miss-interpreted, use some emoticons at least.

The Autism Community Needs to Learn to Give Each Other the Acceptance and Tolerance it Asks From Society

I find that acceptance and empathy I receive from people without any connection to autism is more common. They approach me with an “I have no idea what that must be like, but it looks and sounds pretty hard. I’m so sorry.” attitude. Now this isn’t always the case. I have and will always have encounters with some people who are very rude and hurtful. To be fair, this happens outside the ‘autism community’ as well. Having typical kids as well, I witness the biting remarks made to other parents. The fights and criticisms are really ridiculous.

Autism Family Should Know Better

But in regards to the autism component, people in the ‘autism community’ should know better. They should know that every child is different and has different needs and different paths. This applies to every parent, but especially so to people in the ‘autism community’. This in-fighting needs to stop! Mind your own parenting and leave others alone. Even if you think that the parent is being a bad parent, making sub-par parenting  decisions or has a bad parenting method, stay out of it. You don’t know the inside story or know anything about that family and that person. In light of that, you can’t judge.  If you think a child is in danger and really want to involve yourself, call authorities.

…So please let others be 

Dear ‘Autism Community’, show yourself some support, love, tolerance, and understanding. You are only an expert in your child; not in all forms of autism and its needs.

Sarah

As always, positive comments are welcome. Negative hurtful comments will be trashed before I can even finish reading them. I have many readers who are emotionally vulnerable, and I will not post comments that will further harm.

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Sarah

4 Comments on Autism Parenting In-fighting: Why do we Tear Our ‘Autism Community’ Apart?

  1. I look forward to reading your posts due to your honesty of being an autism mom, about the bruises, elopement, and also the happy parts. Thanks for sharing your stories. There are probably several parents impacted positively by what you say but don’t post.

  2. I think that just like people with autism are all different, parents of individuals with disabilities are different too. Some are loving and accepting, and others are critical and judgmental.
    They are people, and flawed. They cannot imagine living with themselves, or loving themselves, if they cannot keep their child within the household. They cannot understand how their child could benefit from an expanded circle of support.

    I know because I, like you, struggled, even agonized over the decision. It took a long time to fully forgive myself for being human and having limited resources. I was fortunate to have a loving community of special moms and a mentor who guided me through the process, because it was quite literally the hardest thing I have ever done.

    Part of the problem here is, I believe, the dynamics of social media. It is so impersonal. People vent online and say things they would never say in person. And if I ever felt someone in my life was critical of my decisions about my children in general, they would no longer be welcome in my presence. But social media invites in all types. I pray that you no longer feel you have to justify your decision to anyone. It really is not their business. I know you love your child with all your heart. Your child knows it. He deserves a life of his own. I learned early on about the concept of “Dignity in Risk”. To overprotect our maturing children from everything that might possibly happen removes their right to face and overcome challenges by themselves.

    Anyway, you have gone through enough…protect your heart🌻

    .

    • Thank you so much for your encouragement and support. I have to say, with the autism community who are supportive of each other, I find that there is an overwhelming sense of love and empathy. It’s sad that the ovewhelming majority of my negative experiences and feedback come from those within our community. Thank you so much for sharing your story with me! ❤

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