Raising children - with or without autism
Post written by: beagooddad
This site gets found in the search engines for a wide variety of queries involving autism. Some recent ones include “autism and bear hug” “autism and dads” “autism brushing teeth” “autism potty training” and “autism social” just to name a few recent ones.
I may be the worst prepared person to deal with autism because I don’t know which vitamins are supposed to be good and which minerals are supposed to be bad. How much TV is too much? Should Pookie be in a special ed, blended, or regular class room when he gets to kindergarten?
I’m not really qualified to professionally answer any of those questions. I have my opinions, but they are all based on my family. We all do these kinds of searches to learn new tricks and tools for helping our kids. I think we should all remember that every kid with autism is so very different that you can’t expect to find any hard and fast rules. But, if you think about it, what hard and fast rules do you know that work with all non-autistic kids.
The more research I do the more I realize that I think a large number of people take a really sad approach to handling autism. Take a look at this taken directly from the Cure Autism Now website:
You are never prepared for a child with autism. You will gradually come to believe it, but never fully accept it, get used to it, or get over it. You put away the hopes and dreams you had for that child - the high school graduation, the June wedding. Small victories are cause for celebration - a word mastered, a dry bed, a hug given freely.
What? Who writes this stuff?
For the record, I fully expect both my kids to graduate high school. I fully expect both of my kids to get married, if they so choose. I have fully accepted that Pookie has autism, gotten used to it, and gotten over it. Small victories are cause for celebration…WITH ANY KID. I’m just as tickled and amazed when Geetle learns something new as when Pookie does.
So, after four years of parenting, 2 of which Pookie has officially been classified as autistic, here are my words of wisdom.
Raise your child like he is your child whether he has a special need or not.
You don’t think he can clear the table? I bet you’re wrong. You don’t think he can learn to hug his sister? I bet you’re wrong. You don’t think he can learn to feed the fish? I bet you are wrong.
The more fears and doubts that you have, the more you are going to limit what you expect from you children. The more you limit what you expect, the less they are going to be able to do.
Virtually everything that we expect out of Geetle, we also expect out of Pookie and vice versa.
Sometimes we all have to find more creative ways to find a way to connect with our autistic children, but that’s our fault not the kids’.
We recently had trouble when Geetle switched to afternoon preschool and started riding the bus. Her bus comes before Pookie’s. We had a few days where he got really mad when he could not get on the bus. He was afraid that he was not going to get to go to school. We couldn’t figure out how to explain to him that his bus would be coming in less than 10 minutes. Then we got a tip from his teacher, implemented it, and suddenly Pookie understands and has no trouble letting Geetle and her bus leave without him. He didn’t have trouble learning how to deal with the situation. We had trouble teaching him how to understand it.
Feel free to search the internet for tips. Some of them may just work. If it doesn’t, try something else. Never give up and never assume that your kid cannot learn something; whether they have autism or not.
March 6th, 2007 at 1:18 pm
I could not agree more. Of course I can’t say what it would be like to parent a kid with severe autism, so I cannot say whether I’d post the sorts of things that you read on the CAN site, if that’s what I were dealing with. But in a general way, it’s always helpful to focus on what our kids do do successfully, at least as much as we focus on what they don’t do.
March 6th, 2007 at 1:21 pm
Even if I wasn’t married to you, I would say that was one of your finest posts to date.
Its funny, but I find myself trying very hard to think of new things we can “teach” the kids. In the past 3 weeks they learned to unload the dishwasher(including the breakables), hang their own coats up, buckle their own seatbelts and wash themselves in the tub. We have got to think up some more stuff, because they are doing so well and they love it, every one of those tasks makes them feel so grown up. If we fail either of our kids it will be because we didn’t set the bar, not because we set it too high.
I did not get a response to my angry email to the CAN people yet. I will let you know when I do.
March 6th, 2007 at 6:55 pm
Even if I wasn’t your mother-in-law I,also, would say that these were the thoughts of a common sense, pragmatic, observant, smart cookie (probably on oreo since I know they are one of your favorites). I totally agree and pray that I can live up to it.
March 8th, 2007 at 6:38 pm
very well said.
March 11th, 2007 at 11:45 pm
In my expereience our children’s growth can be limited by our own lack of imagination and faith in their abilities. I believe that both of your children will excel, because of their own abilitites, because you believe in them and because infect them daily with that belief. Wopnderful entry to the Carnival of Family Life. I’m getting addicted to you, Dad!’
March 12th, 2007 at 1:29 am
You’re right. Every child should be given the opportunity to try to learn new things and do things for themselves.
Here from the Carnival of Family Life.
March 12th, 2007 at 9:04 am
Oh, how I hate to play devil’s advocate here! First, I do want to say that high expectations for your children are something I absolutely agree with and I support your stance on that.
But I am also a proponent of pragmatism over denial.
I am sure that, as a parent of an autistic child, you know how that disease can run the spetrum from very mild cases only a hair’s breadth away from Asperger’s, to severe cases involving head-bashing and destructive behavior. Sure, accepting your child has autism and “getting over it” sounds very healthy and well-adjusted. But isn’t that really simplistic, too? This is a huge adjustment for most parents. Some really struggle with denial. Many have other children who are gifted or also have challenges of their own. To imply that they are selfish, self-indulgent or wallowing in their own self-pity because they have genuine concerns over what each of their children will be able to experience from life seems a bit harsh to me. You may very well expect your child to graduate from high school and get married. Other parents may simply hope their severely autistic child doesn’t injure his brothers or sisters.
Remember, too, that you have been parenting a grand total of 4 years. At every level of a child’s growth there are different challenges. Sometimes, chlidren do not have wonderful teachers to give their parents tips on how to handle difficult situations (you know, it would have been helpful if you had told everone what that helpful tip was, by the way). You yourself admit you are not remotely prepared to deal with the harder choices coming your way. I get the definite impression that you have a bit of denial yourself. I have seen more than one case where the Mother knew her child was autistic and the Father simply could not accept what that diagnosis meant.
Again, I am not suggesting that in general parents shouldn’t have high expectations. I actually don’t think the site you quoted was saying that, either. I think they were saying that as a parent of an autistic child you should have *realistic* expectations. In other words, accept what your child is capable of rather than expecting them to be just like your neighbor’s child or your children who are not autistic. You sound very noble when you say that it wasn’t Pookie’s understanding but your teaching that made his anger a problem. Did Pookie attack you physically, bite and scratch and punch? Because sometimes, the anger IS the problem.
Again, I don’t like playing devil’s advocate, but I do think you are painting a very simplistic and rosy view here that could lead parents who are already in denial to underestimate the difficulties of raising an autistic child.
March 12th, 2007 at 9:07 pm
I love, love, love this post.
March 12th, 2007 at 9:31 pm
Viv,
I never meant I wasn’t ready to deal with what is coming with my kids. I meant that I am not prepared to be an advocate for any cause bigger than my family. I’m not digging through medical research papers for any cures. There are surely people better qualified for that than me. I am very well qualified for dealing with my kids because I have spent four whole years listening to them.
I have never for one second had any denial about Pookie’s autism. I had suspicions when he was very young.
At the end of the day, I think that the more positive parents are and the more they expect out of their kids the better off everybody will be. I’m not talking about constantly drilling them until they learn their multiplication tables. I’m talking about not assuming that a child is not capable of learning something.
I don’t think we have too rosy of a view point over here. We are still wondering when he is going to potty train. But instead of constantly reminding ourselves that he hasn’t figured it out yet, we instead look for the signs that it is starting to click.
Like last night, he walked to the toilet by himself after bath and stood their as if ready to go. Then he walked away. I decided to steer him back and whispered in his ear a few times, “I think you can do this.” And, he did. That’s cool. But he hasn’t mastered it yet. He stood in front of the toilet with no intention of using it tonight. I’ll spend more time thinking about what went right yesterday and work on recreating that.
Your line of “Remember, too, that you have been parenting a grand total of 4 years” might be one of the funniest things I’ve read for a while. At what point does somebody become qualified? No parent is ever ready for The Next Stage. That’s not an autism thing, that’s a parenting thing. I’ll deal with those situations when they arrive.
For the record, Pookie has never phsyically attacked anybody more than pushing his sister away when she bugs him too much. I think that’s pretty normal 3-4 year old violence that we have dealt with when it happened. He did go through a biting day a few days back…but it was some kind of game that passed. He did manage to get my belly twice though. I’m just glad Geetle didn’t notice the game, though, or she probably would have joined in the attack.
March 13th, 2007 at 8:14 am
Viv- you reap what you sow. My goals for my children don’t have to be “realistic.” They are goals, not mandates. Not even expectations. If they fail to meet the goals I have set for them, that’s OK. why does everyone in the world fear the idea of a “goal?” Failure to meet a goal is not shameful. Not having a goal is shameful. By definition, our job is to help them be the best they can be. And that does NOT include limiting their goals to what is “realistic.” If everyone did that, there would be no one person in the world who stood out from the rest. We would all be C students who can cook a bit, draw a bit, dance a bit, etc. But there would be no one who was a violin master, a mathematical genius, or a molecular biologist.
Have you ever read Brave New World by Aldous Huxley? That book might appeal to you. In the book, characters’ skills and life are predetermined at birth. When you see it in a plot like that, you realize how stupid it is to set your children up for failure right from birth.
March 13th, 2007 at 8:52 am
Wow. I’m sure you didn’t mean to sound as if you were calling me stupid, but it sure does sound that way. Why the personal attack? Do you only want people who agree with you to comment? I didn’t realize that was how this blog was run.
Look, I said I am in favor of high expectations, and I am. I have very high expectations for my kids, and they meet or exceed them. There is nothing in my comment that says, “Hey, accept mediocrity.”
My concern is that the original post minimized the very real, tough choices parents of autistic children often face. I’m glad for you that Pookie seems to be quite mildly autistic. But I DO know parents who are not so fortunate, and the original post was so very much a “look at me, I’m such a great Dad that this is a breeze” attitude that I felt it belittled their very real struggle. I honestly felt the post was, frankly, more of a pat on the back then a real insight.
Here’s what I am getting it: Too often, we disguise how difficult parenting is, and that’s a disservice to people who are struggling, especially to parents of special needs kids. They don’t need to hear, “you just don’t have high enough expectations.”
Your child is doing well and I applaud you. But I do know parents of severely autistic children, children who become physically violent during their tantrums, children who bang their heads against the wall and could cause harm to themselves–the whole, “you don’t think your child can do this? I bet you are wrong” attitude is a little patronizing to them, that’s all.
March 13th, 2007 at 9:11 am
When I saw your original comment I figured any response I made would make you mad. Can’t win them all.
It is always fun to watch somebody say a counter opinion and then when responded to say that this blog doesn’t want counter opinions.
If I didn’t want the comment, I would have deleted it. Feel free to comment and disagree with anything I say, but don’t expect me to just nod my head in agreement.
I also know that the day that I find my self not exposing my children to something because I assume they will not be able to do it is the day I pack up this blog. We have always had that approach with our kids and it almost always works.
March 13th, 2007 at 9:18 am
I’m sure everyone does the best they can with the kids and the resources they have. I agree with Viv that you can’t always have the same expectations for a severely autistic kid as for a less autistic or neurotypical kid - and I think the last thing ANY parent needs is someone saying they aren’t doing enough. All anybody really has are hopes that their kids (of whatever category) will live up to and beyond their expectations.
March 13th, 2007 at 9:52 am
For the record, I never said any parent wasn’t doing enough. I was commenting on how common it is to lower expectations based on what we think our kid cannot do and my belief that this is wrong. Kids of all capabilities do amazing things when people expose them to situations, encourage them through those situations, and fully believe in their heart that they will find a way of helping their kid make the connection they need to learn something new. Some kids take longer, some may never learn something, but as parents it is my belief that we should believe that our kids will learn it and keep looking for encouraging ways to help them learn.
March 13th, 2007 at 2:50 pm
Dear Mike…..on the same page with you and Beagoodmom. I find that people often live up to what is expected of them. There is no such thing as “breezing through” parenting. We all have the ups and downs. I’ve shared plenty of both and I know from reading your blog you have too. I like that you take the high road of sharing little victories and insights, because the low road of frustrations and battles is always easier and often at the forefront of our minds - we’re human. Thanks for sharing your thoughts!
Hugs,
Holly
Holly’s Corner
Here via the Carnival of Family Life.
March 13th, 2007 at 5:27 pm
That is some great advice. I think all to often parents focus on the special needs rather than the child. You make some great points about expectations, people will live up or down to whatever expectation is set for them.
Here via the carnival of family life.
March 13th, 2007 at 6:29 pm
I do see Viv’s point. My fifteen-year-old son is autistic. He’s very high functioning–he gets himself up and dressed for school, cooks his own meals more often than not, is extremely articulate and writes thoughtfully and creatively in his own blog. On the other hand, he has kids in his special ed resource room who have spent years in the same school system–with more intervention than my son ever had–and yet are completely nonverbal, and frequently violent. I would never, EVER think to myself that the parents of these boys simply didn’t have high enough expectations for them or haven’t found sufficiently creative ways to connect with the kids. I am simply more fortunate than they in that my son’s autism is mild and he had traits like hyperlexia that promised a better outcome. I certainly wouldn’t want the parents of children who don’t do as well to blame themselves, since there but for the grace of God go I.
March 13th, 2007 at 7:41 pm
I’m not mad at all. I did think that saying that a Brave New World might appeal to me (yes, I’ve read it) in the same sentence as saying how stupid the book’s concept is was a little dig at me personally, but that wasn’t from you, beagooddad. Like I said, I’m sure it wasn’t meant to come off that way. In general, I usually find I relate more easily to beagoodmom (not surprisingly). I just felt that in this case beagoodmom jumped in because she thought I was going after you, when really I was just disagreeing with your viewpoint. Regardless of whether or not I agree with your opinions, though, I am still glad there is a forum to discuss issues like this.
March 14th, 2007 at 1:20 pm
Well said! I think that parenting any child with special needs should simply be…parenting. For ALL children you take into consideration their particular eccentricities, whatever those may be. My older son had sensory issues, so I cut tags out of his clothes and turned his socks inside out. My younger son has Down syndrome, so perhaps the “perfect” life I envisioned for him once upon a time isn’t possible, but by listening to what his needs really are, the same as we should all do with all our children, I can adapt that “perfect” vision into the one that works best for him. Yes, if you have a child with special needs, whatever they are (and I am certainly am no expert on the needs of an child with autism and how they differ from the needs of a child with DS), you do have to let go to a certain extent of whatever your expectations may have been at one time. There is a grieving process for that, and if you’re lucky you also remain open to allowing the best and highest for that child that can be attained. It’s been a challenge for me to remain open, but the gifts and rewards have been tremendous.
March 14th, 2007 at 1:21 pm
Oops, forgot to mention that I am here from the Carnival of Family Life. Thanks!
March 28th, 2007 at 11:33 pm
I’m glad I found your blog. As a mom to 4 sons –3 with special needs including two on the autism spectrum– I recently “summarized” what you’ve beautifully spoken here…a child is a child.
If interested here it is
http://slurpinglife.typepad.com/slurping_life/2007/03/adjective_child.html
I plan to be back.