I’m going to throw this topic open for discussion, because I am certainly no expert here. I am learning as I go. (Which is pretty much the definition of parenting.) I know from talking to other mothers of kids with special needs or medical issues that it can be really challenging (understatement) to figure out what behaviors are caused by the child’s issues, and what has more to with age or temperament. Of course these things are never black and white; there is usually a variety of reasons for why a child is doing something you’d rather he didn’t do. Deciding how to address the problem is the big challenge.
I remember an incident from when Jane was two, during one of her prolonged hospital stays for chemo. Most of the time she was astonishingly cooperative during treatment, but on this day she was emphatically not happy. "Not happy" as in shrieking her lungs out in the middle of the hall. In a flash we were surrounded by about seventeen medical personnel wearing expressions of worry and alarm. Was she seizing? Had she pulled out her line? I remember kneeling beside Jane, looking up at the army of doctors and nurses, explaining to them that no, it’s just that she’s two.
What had happened was that I (gasp) said no to her. No, you can’t sprint down the hall when you’re attached to an i.v. pole. She was two years old and in the mood to sprint, and her tantrum had nothing to do with her illness at all. It could just as well have happened in a grocery store or at church. She just happened to be spending her toddlerhood in a hospital, and when toddler ‘tude kicked in, it happened in a place where the staff was trained to assume screaming and flailing of limbs indicated a medical emergency.
I can see how they made that mistake. These things are not always clear cut. My Wonderboy is a sweet, sweet child. But he’s also, shall we say, a bit rigid. And determined. That determination serves him well; after all, it’s what got him off the floor and onto the furniture. But he is two and a half, and his goals are not always quite as satisfactory, from my point of view, as, say, walking and climbing. And often I find myself navigating difficult and uncharted waters. If he’s doing something inappropriate, how much has to do with his issues (I sort of hate that word) and how much with his age, or his mood, or circumstance? That’s a rhetorical question, you understand. No one can answer it for me. The answer changes every day, with every situation.
But the challenge is consistent, and I think it’s a challenge faced by a lot of parents. Wonderboy grows daily more fluent in two languages: English and ASL. But there are many times when he refuses to use either one. He’ll sit in his chair and reach toward the fridge making totally obnoxious fussing sounds. This is not OK, I tell him. Use your words. Do you want some yogurt? I have my strategies for retraining this inappropriate behavior: I sign his choices (he can’t hear me when he’s fussing); I refuse to give him anything if he fusses for it. ("Inappropriate behavior gets you the opposite of what you want" is one of my basic principles of child-rearing.) Fussing that escalates to a tantrum gets him plopped in the playpen penalty box. (At least, it did until I packed the playpen away for house-showing. Now I use his bed.)
But during such lovely little episodes, of course I’m wondering how much of his behavior is bad habit in need of retraining, and how much is the big old frustrating communication gap that goes along with hearing loss, which will be less of a hurdle as he gets older.
I’m just using that scenario as an example of the kind of thing I mean. Before he was able to stand up, he’d sit and cry or shriek for someone to get him. Of course I felt sorry for him, stuck there, dependent on someone else for mobility; I couldn’t leave him crying on the floor. But neither could I allow him to think the way you get what you want is to scream for it. I had fears of raising an imperious, obnoxious little tyrant who thought his physical limitations gave him carte blanche to order people around, like Colin in The Secret Garden.
So day after day—hour after hour, it sometimes seemed—I worked with him, insisting that he sign "help" before I’d get him up. Sometimes I felt so mean. Sometimes it went on too long. Sometimes we had to BE somewhere, or one of his sisters needed me, and I had to just grab him and go—which, of course, is just the kind of inconsistency that delays the formation of the good habit. But little by little, we got there. He learned to ask for help. Nicely.
And I know he’ll learn to ask for yogurt, nicely. It just takes so much diligence on my part, and that can be exhausting—the need to always be focused, to be thinking about how I react rather than simply reacting on autopilot.
As I said, I know I’m far from the only mom in this boat. So I figured I’d open the topic to you all and see if it’s a subject you’re interested in pursuing. I’m not all homeschooling and fun learning stuff here; I’m special-needs kids too. (And also: large families. And: big scary cross-country moves. But I digress.) I would love to hear your stories and insights about raising kids who pose behavioral challenges on top of the regular challenge of being, you know, two years old. (Or three, or four, or five…)
It definitely took me longer to expect things. One of the biggest issues in raising our kids (though it has less impact now) was expectations. Because the oldest (the one with special needs) couldn’t do certain things, I didn’t expect those things of the younger children until much later than I should have. For example, the oldest one’s tantrums were so bad that I allowed the others to tantrum more and harder than I should have, at older ages, just because their tantrums were so much milder that I assumed they were age-appropriate. And I didn’t expect the younger ones to pick up their toys, not realizing they had the capacity to do it, because the oldest didn’t and I didn’t realize that was a special-needs issue, not an age issue.
I think a person who has to overcome physical limitations will need to develop and train his physical strength but will also need greater emotional strength to be truly happy in life. Maybe these strong temper tantrums, which tend to be more pronounced in a child with special needs, are nature’s way (God’s Way) of providing the extra strengthening exercises for the psyche.
Lissa, I think you have a very good handle on what your children need you to do.
And remember, most of us aren’t *perfectly* consistent with *any* of our children … there are always those times you have to scoop them up and be somewhere, those times when we compromise, and yet the kids still turn out to be pretty great people.
The fact that you’re aware of this now, when Wonderboy is two, will make all the difference. If this were just now dawning on you when he was 9 or 10, then you might have to worry. 🙂
This isn’t really helpful, just an amusing anecdote.
My youngest sister has multiple impairments. When she was three, she went through a stage where she refused to wheel her chair over a wide, rather high flooring strip between two rooms. She would just park there until someone came along and pushed her through.
She had the sweetest temperament and had navigated over rougher terrain than this. But for some reason she refused to wheel her chair over this little ‘speed bump’.
Finally my mother decided this was enough silliness and gave her a little hand slap. We all cried. My little sister cried, my mom cried, we older girls cried. It was just pathetic.
But she went over that hump with ease and never had a problem with it again.
My mom still gets emotional when she tells that story.
Our 11yo daughter is mildly autistic, and the youngest (5 1/2) is legally blind.
With the 11yo, consistency was (and is) the key- guess how many times we’ve fallen down on that one? But our one Big Family Rule did not change for her- no rudeness, ever, to anyone, for any reason. Since she didn’t know that not answering someone was rude, or that avoiding eye contact was rude, she had to work harder at social manners, but it also means that she will be able to get along in society without people thinking she’s a weirdo.
The youngest was a bigger challenge. On top of having 16 surgeries before she was a year and a half old, she has a very stubborn personality (and she’s the baby of the family). She did not want to explore on her own or use her remaining vision al all- in fact if we didn’t pick her up and cart her around she would curl up in a ball on the floor and take a nap 😉 Why try to find your favourite toy when you can holler for it and an obliging sibling will come running? It took a whole lotta REPETITION before she finally clued in that with a little effort she could manage simple tasks on her own. Now? She plays hockey a year above her age level, rides a bike, draws and paints beautifully ,knits, etc, etc…
It sounds to me like you’ve already figured out how to approach training your Wonderboy, just like we had to figure it out with our two Wondergirls. Even if you know of another parent who has raised a child with the same challenges as yours, their advice/ methods/ priorities may not work for you or your particular child. “Your individual mileage may vary” and all that 😉
I think you’re doing absolutely wonderfuly with wonder boy, and as with all toddlers (but especially those with unique abilites) being consistent in your instruction to “use your words” is always hard. Try not to be too hard on yourself…remember everything is always more trying/exhausting when DH is gone. I honestly don’t know how you are surviving! I’m so lucky I didn’t have to be seperated before our move as long as you and your DH have been! Good luck, God Bless, and best wishes!
I’ve used this example often to demonstrate the difficulties in determining whether a child’s behavior is caused by disability, age or attitude. One of my daughter’s disabilities was that she she could only interpret one instruction at a time. She could hear fine – the brain just didn’t interpret what she was hearing. So I would say to her “Close the door and come here.” And she would close the door as she went on outside. Did she only “get” the part of the instruction about “Close the door.”? Or did she just do a typical kid thing, and figure once she was outside, I wasn’t going to get up and come after her. Or was she deliberately trying to upset me because she was angry at me at the time. And would your answer be different if I told you she was 3 or 7 or 11 or 15 years old at the time?
Where’s the training/troubleshooting manual when you need it??
That previous post by Karen E. is a wonderful one!
I’m still waiting to meet the first child who does not respond positively to the following three things:
1. Being praised extravagantly when he does well.
2. Being scolded swiftly and certainly when he does wrong, and
3. Being told early and often that you love them.
That goes for kids with all kinds of abilities.
best,
Flea
Lissa, you are impressing me with your persistence in getting wonder boy to ‘use his words’, considering all the stresses in your life! My Christina, has Down Syndrome, and is the most strong willed four-year-old I’ve met,(and I used to own a daycare).
I haven’t yet managed to potty train her; I think it’s more her lack of cooperativeness than developmental issues. She just says,”NO!”
She CAN speak when so inclined, for example her absolute favorite phase is a crystal clear, “I don’t want to!” but do you think that “yes” is in her vocabulary?
Therapists are full of helpful suggestions that are only possible to implement in small families with one child at home, and LOTS of ‘free’ time. I constantly struggle with guilt about her wasting away in my home and not reaching her full potential (as her therapists hint that she is) UNTIL, I overhear a conversation she’s having with her sister Isabella, age 9 while they’re involved in a make-believe game. Or I see her snuggle into my teernager Gabby’s loving arms to caress her face, or see her leap off the coffee table into Daddy’s arms. These are things I didn’t see in the special needs preschool she attended for a year, making no faster progress than she did with therapists at home.
One more thing: in my daycare we had a speech delayed toddler who understood Spanish(her mother had pushed the wax into her ears,while cleaning them, making her hard of hearing!) The speech therapist came, speaking Spanish, arms loaded with wonderful toys to stimulate language development. One year later, Nancy tested normal in speech, and hasn’t stopped talking since; in English! Apparently the other children and I had taught her English by merely including her in our routine acitivities. Surprise!