When It Comes to Autism, What Does It Mean to "Face Reality?"
Your child with autism may not be responding to a particular treatment. But that doesn't necessarily mean he won't respond to the next treatment. So do you "face reality" and accept your child's limitations? Or continue the search for the right treatment - forever?
Your child with autism may not be verbal at the age of six. But that doesn't necessarily mean she won't start speaking next year. So do you "face reality" and accept that you have a non-verbal child, and focus your time and energy on finding, funding and teaching other modes of communication? Or do you keep the faith and keep plugging away at verbalization?
Your child with autism may be having a terrible time in a mainstream classroom. But that doesn't mean he couldn't succeed in the same setting with different accomodations. So do you "face reality" and place him in a specialized classroom? Or do you advocate like crazy for the accomodations that might - or might not - allow him to succeed with typical kids?
This particular question has been driving me nuts lately. Yes, my child with autism has real talents. At the same time, he has equally real limitations. How hard do I push? When is it time to back off? Do I steadfastly focus on his strengths? Or focus my attention on supporting his weaknesses?
I know: in an ideal world of 48 hour days we'd do it all... but in the real world, it isn't possible to spend eight hours a day on behavioral therapy and another eight on academics, while also pushing the social skills... So we are forced to pick and choose, based on our own perceptions of what "reality" really is.
If you're an adult with autism, or the parent of a teen or adult on the spectrum - what's your take? What does it really mean to "face reality?"
Comments
As a parent of two completely opposite Autistic Children, I can say that “Facing Reality” is realizing that there’s always “some” way in. It may take days. It may take months. It may take years. But even when told by several different therapists that it’s unlikely my daughter would ever learn to eat solid foods, much less gain enough FMC (Fine Motor Control) to feed herself using utensils… She’s been proving them wrong. I’ll admit, we still have our bad days, but for the most part, she eats 3 meals a day, and she tries a little harder each day to do it the way Mommy and Daddy do.
So I say with personal faith: Never give up on your children. No matter how hard the road. Only You, as the parent of an Autistic Children, can be the voice for those who cannot speak.
-Steve I.
The reality is that autism is a disability if we accept that it is then anything and everything is possible. The only issue I can see is that we are often far too impatient with what we want or expect our children to be able to do and that leads to negativity which I believe impacts on our children.
I know of no other disability where we seek to normalise quite as much as we do with autism and I have yet to work out why. The reality is that my two sons are autistic but that they just as capable of surprising me time and time again as my none autistic son is.
It was not so much facing reality when we decided to remove our two sons from the school system as realizing that for them school was not the right place to learn. When the constant pressure to perform and aspirations to be just like the NT children in their class was removed ,we saw that both of our sons did actually want to learn, but they did not want to aspire to be like their NT peer group, and why should they.
My motto is now ‘everything comes to she who waits’ and it usually does. Life is not nor should it be a race. We are not in it to win in we are in it to live it.
The questions start out being how hard to push or whether to just accept status quo; but then, as we venture forth into Autism, become more of an awakening.
Possibility contrasts with probability then bumps up against miracles closely shadowed by failure. Dreams bloom and die hundreds of times in our imagination as we struggle with the myriad minutiae of day-to-day life and climb the escalator of Autism.
As many of us troll the internet, we connect with thousands of other families; some with more resources or more successes and many who have so much less we feel guilty for our own doubts and the chip we carry on our own shoulder.
We are an isolated breed, spending our days physically (doing) and our nights intellectually (researching, contemplating). Sleep is rare because our children either don’t sleep (well or at all) or if they do, we are driven to discover something, anything that can help them feel better in their own skins.
This is the bottom line, how do we help them be well, comfortable, and safe?
For me, it has been one small step at a time…Help her to be able to sleep well. Help her to be able to tolerate and consume enough nutritional food to sustain her life and health. Help her to be able to communicate her pain, joy, desires, and frustration. Help her to recognize the wondrous things within her and apart from her. Help her control her bladder and bowel so her clothes don’t get wet and uncomfortable. Help her to be safe; curtail elopement and teach danger.
As we accomplished each hard-won success, another naturally fell into place at the end of my list. To Lisa’s point our reality changes almost daily. I can say, with authority, the doctors were wrong when she was a baby, they were wrong when she was a toddler, and they were wrong in telling me she would never have language, toileting skills, or independence. She is writing her future.
What will she become? I don’t know. What I do know is that I promised to give her everything she needed on the day that she was born. I am doing my best to keep that promise.
My research and her dauntless effort have helped her to not only surmount a staggering four-year developmental loss but do so in a manner that allows her to fully participate. In a mainstream classroom, on the playing field and playground, in age-appropriate academics, in self-care and governance, and imaginative play she looks like all of her neuro-typical classmates.
She knows she has autism. She knows the other kids don’t need 300 exposures to learn something new. She know other kids’ emotions don’t threaten to run out of control at any moment. She knows her diet is different even though she eats food that looks just like everyone else’s. She knows that we love her and are so very proud of every single accomplishment she achieves. And most importantly, she knows that we will love her and be proud of her no matter how well she achieves the goals we set or those she chooses.
We must each do what allows us to look into the mirror and like what we see. For me it is to know all I can and use that knowledge to help her and any other child with autism who happens to cross my path.
The way I see it, she will be just like the rest of us, struggling to do her very best; at what, only time will tell.
Maybe our “realty” is what we FOCUS on, our personal experiences and our comfort zone…autism can interupt the equalibreum of all it’s family members.. creating a family focus/reality that is very far removed from the mainstream if we let it sweep us down river….
Sometimes taking a breath and prepare to swim upstream is all we can do to survive…. to get us back to some sort of normalcy and balance in our lives.
I can not take away the “autism” but I can do my best to give my child some “normalising ” experiences that can be “shared ” with peers, and create a bridge even for a momment.
A smile is shared a connection is made and reality is changed yet agian for a child/family who were told that he would never do X….he amazes me,we are given a gift.
I have learned to never underestimate any of these kids…. thier potential is often hidden,their realities altered, but fascinating…
If we “went mainstream” and agreed with every proffessional that we have worked with…our child would not, read,write, tie his shoes, have a conversation with us, lable his/others emotions, be distant always, never hug/seek us out, instatutionalsied…etc
The above we were actualy told by “PROFFESSIONALS”in the autism field…mostly I feel do to thier training….
Our child, is not in an instatution,
What CAN HE DO?
Tie his shoes,
Converse
Ask questions/often about emotions
Write with extra time
Make us toast/sandwiches and drink
Loves hugs/time spent with family/anyone who will give him thier time to LISTEN
Does any of this sound all that unusual.Belive me we have our tough times…we have been through ALOT to get here…he is not “cured”.
But the “reality” we were given about 8 years ago is a far cry from what we are living now.
Wow. Thanks to all of you for taking time to provide such inspiration to parents of younger children like me.
Great topic Lisa!
For me facing reality meant turning away from “expert” opinions and following through by feeding my child’s strengths, passions and desires for his own future goals. It felt like common sense to me. And it worked!
Believe in yourself and your own parenting instincts above and beyond what any professional tells you. What you know in your gut will probably get you further. After all, who knows your kid better than you?
Weigh the odds of what your child’s passions and strengths are against whether they can be developed to lead to a successful outcome for him/her in the “real world” as an adult. By that I mean I see no reason why not to focus on the best of your child’s abilities if developing those can translate into a(n) (more)independent outcome as an adult.
The reality is we want our kids to be able to be well-adjusted self-supporting productive citizens someday, confident and content with themselves. Isn’t that EVERY parent’s goal? Ours have a knack for perseverance; I see no reason not to feed the strengths and abilities that their perseverance is applied to, especially if you can see how that can lead to a successful, happy outcome for your kid. It doesn’t have to be what you want, your best success will come in nurturing what your child wants/seems to want for him/herself.
Trust your instincts!
I have a child on the spectrum who is presently almost 17 years old. It’s interesting that this topic came up yesterday, because my husband (the step-dad) and I were just discussing our reality. Our present reality means that we aren’t able to eat out (other than on the rare occasions we get a sitter) as my son is on a very restrictive diet. We can’t travel much anymore as he doesnt adjust as well as he used to. We can’t do family outings in the same way we used to either. But all in all-we are totally ok with this life. It is our reality. Also, one day things will be different as I am involved with a group of parents that have committed to building a community for ourselves and our adult children on the spectrum. My son will live near us but in a different home with others on the spectrum. His daily needs will be taken care of by others rather than me, but we will still be able to see each other daily. He will have job training and a social life (as will I). So that is my reality-present and future. And it is all OK with me.
My son is now 18 years old. At one point I just knew I had to get my son into a certain middle school, it was after all the best place for him. I fought everyone from the local special education co-operative to the district to the district that kept refusing him. I was even all set to rent an apartment in that distsrict to get him accepted. I asked myself “why is this being so hard!” A voice clearly said “because it isn’t supposed to be.” and it wasn’t. Take time to quietly listen to your inner self or higher power. Trust your instincts you know your child better than anyone else.
I guess reality for most people varies depending on how they view it. For me, as a parent of an autistic child..reality does not necessarily mean “what is acceptable” for most people. I always see my son on a different light ever since he was diagnosed with autism. We totally accept him for who he is and what he is capable of doing. He may be different from other kids but we don’t really care because for us what is important is how he is being accepted by the people who truly understand and care for him..He is such a wonder to us and he will always be different but that what makes him really special in our eyes. No form of norm or reality can ever measure the way an individual must be accepted and treated..after all we are all unique in our own little ways and we should be proud of that.
great questions Lisa! Thank you to everyone who posted their heartfelt comments. They are invaluable - all of you who have gone before us so to speak -
My son is 15 with autism and I want to thank you guys for the comments. He has always gone to a special school in an autistic support classroom and I have always told the public school “no” during his IEP’s when they ask if I want him to be mainsteamed because he’s a straight A student and does well right where he’s at. I get concerned sometimes because he has no friends and doesn’t get peer interaction but after reading this who cares-he’s happy and that’s what counts. This year he started going to different classrooms in the building with different teachers for American Government and Science and started getting homework every once in a while and he sees homework as a punishment and punishes himself by not watching TV for a week or listening to his music before school (which I’ve tried to explain to him that it doesn’t make him lose his concentration in school, but calms him down before starting the day but he won’t exept it). I was about ready to make a chart out for him for his homework and earning rewards (money to buy music CD’s or whatever he wants to save up for)but after reading these remarks, why should I. The teacher gives him the whole week to do his homework when the other kids (who aren’t autistic) have to turn it in the following day. So if that works for the teacher and works for my son then it should work for me too. Thanks for opening my eyes.
I am just starting this journey with my 4 yr old son. This idea of a new reality is similar to what I have explained to my friends since we got the diagnosis. I describe it as falling down the rabbit hole. There is as much positive as negative to the experience if you know where to look.
As an example, this morning my son was fancinated with the fresh snow. He keep going outside (without a coat and shoes) to scoop it up and bring it into the living room where he threw it at me and his father. He spent 20 minutes smiling and laughing as he had his snowball fight. I have to agree with him snow ball fights are more fun inside where it is warm than outside where it is cold and wet.
Facing reality. What a concept!
I think that when we “face reality” we have to realize that there are two realities. Yours and your child’s.
We all know the symptoms of autism, and we grow used to recognizing our child’s behaviour in those terms. But it occurs to me that some of those symptoms rub off on us. If we’re not careful, we engage in echolalia (rote repetition of words/phrases), stereotypies and repetitive patterns of behaviour, abnormal focus of behaviour or routine, exhibiting a need for sameness (DSM-IV).
All of this is in response to our perception that our child is engaging in these behaviours.
The other day, our toilet was plugged up, and my son saw me applying the toilet plunger. Throughout the day, he repeatedly brought me into the bathroom and asked, “Why is there no water?” I repeatedly told him, “Look. There is water in the toilet.”
Echolalia? Stereotypy?
Then it occurred to me that I was talking about water in the bowl. Maybe Jeffrey was asking about the drain. I explained to him that the toilet was plugged, but now the water could go through the drain.
His questions stopped. I had answered the question he was trying to ask.
The reality is that Jeffrey was not being rigid and repetitive. He was being patient with me!
So. Yes. It’s impossible to “face reality” because it’s virtually impossible to know what “reality” is.
It would be easier, though no less frustrating, if we could differentiate between communication difficulties and the other DSM-IV symptoms.
But since we cannot, we have to maintain a flexible “reality” for ourselves.