Giving In To A Child With Disabilities

Ellen Seidman's nine-year-old son Max likes to have things his way. He went through a Cars 2 phase, wherein he would watch that video -- never the original, only the sequel -- over and over and over again. That was followed by the spaghetti with tomato sauce phase, when that is all he would eat -- including for breakfast -- and insisted that everyone call him "Max eats spaghetti sauce."

His parents are particularly relieved that he is over his car wash phase, when he used to demand that the car be sent through, sometimes twice in a row. "We had the cleanest car in the 'hood," his mother says.

Through all this, and to this day, Max loves purple. For nearly two years now he's insisted on such things as wearing purple clothes, eating from his own purple bowl (which he made at a pottery place, and then insisted on carrying with him everywhere), and sleeping on purple sheets.

Enough already, I hear you saying. Max's parents need to grow a backbone and stop letting their child run the house.

Don't be so harsh, I hear others responding. Kids do this. It's their way of controlling their world. This will pass.

Okay then, let's complicate the picture. Max has cerebral palsy, due to a stroke at birth. As a result he has severe speech impairments, some cognitive impairments, and challenges using his hands.

Oh, you say. Well then, let poor Max have his way. His life is hard enough as it is.

Not so fast, says his mother. If her goal is to allow Max as normal a life as possible, is she sabotaging that goal by indulging his whims? Are these quirks a part of his physical limitations, or rather the result of parents who confuse them for that?

You may know Ellen from her blog, Love That Max, which is a go-to resource for parents of children with a wide range of disabilities. There Ellen told of her latest dilemma, and asked her readers for their advice. I offered to ask my readers, too, as well as Dr. Jerry Bubrick, a cognitive and behavioral psychologist at the Child Mind Institute in Manhattan. Read what she wants to know, watch his answer, then use the comments to discuss what to do about Max.

Ellen writes:

I've been planning a birthday party for Max at an art studio, complete with purple craft projects, a table of purple shaving cream, and other purple wonders. Plus, of course, a Cars 2 ice-cream cake. As we've emailed about the event, the coordinator's come to understand just how deep Max's purple passion runs. "Now I'm wondering if it will be a problem for Max if his friends take home their purple projects," she emailed me yesterday.

Um, yeah. It would be a problem. Max would have a giant purple meltdown. He thinks purple is his color, and his alone. If we're talking with someone and I mention that Max likes purple and the other person says "I love purple, too!" Max will say "Noooooo!" And then, as his Official Spokesperson, I will explain that Max likes to be the only person in the room who loves purple, and perhaps they have another color they like?

The exchange with the art studio staffer did make me wonder about whether I give in too much to Max's obsessions. Like the way we'd only go to restaurants that served spaghetti when he was in his spaghetti phase. Or how he only wants to sit in corner tables at places, and so we do. Or how when we're driving on a highway, he'll insist on being in the right lane and we'll switch to it. Or how we'll let him watch the same Cars scene on YouTube 10, maybe 20 times in a row.

Of course, sometimes we center life around Max out of necessity. We know we can't go to certain events where there will be crowds and noise, which unnerve Max. We're planning a winter vacation right now and this one restaurant sounds awesome but they ring cowbells between courses and it's a super-busy place, so we can't check it out. And that's perfectly OK--there are other restaurants to visit, other activities to do.

For his art bash, though, it's his party and he won't cry if has all the purple he wants to, as the song goes. So I emailed the staffer, "I think only Max should make a purple project, and the other kids can use other colors." And that's the way it will be.

Still, I'm thinking I might need to take a stronger stance on non-birthday events. I do not want Max to grow up thinking the world, purple or not, revolves around him.

Comments

[hidrohi]

01:52 PM on 01/08/2012

There is no black and white with raising a special needs child. When my second child was born with Down Sydrome, I said he will be raised just like my first and I will have the same expectations and not treat him any differently. Well then reality set in!!! My youngest has a disability and there is a lot of gray with it, my rules and structure wasn't going to work for him. I'm a control freak and a total rule monger so having a child that couldn't follow that high standard was a rude awakening for me. It's also taught me to be flexible. The progress has been amazing! If I was to have this high expectation that Paolo needed to follow all the rules with no mistakes I would be crushing his spirit and self esteem.
Max does make a lot of choices and his obsession with purple was getting extreme when it was impinging on other children's rights. He seems to need a lot of control to keep himself regulated. I would make a plan with one of his therapists to plan a strategy of what you want to address most importantly. I think it's hard to completely change a behavior but making changes towards a positive outcome is the goal! I have to say our OT has been a guiding light in making these positive changes and setting goals for Paolo....a little at a time is the key!!

[momgag]

12:42 PM on 01/08/2012

I think it is a mistake to indulge a child's obsessions to this degree, for a variety of reasons. The child is learning that what he wants takes precedence over what other people want or need, ie, that he is the center of the universe. Giving in constantly on these obsessions will only make him MORE rigid and less flexible, which will further restrict his experiences in life. He is also learning how to be a master at manipulation and resistance, which will make progress in other areas more difficult (such as toilet training, expecting him to dress himself, follow class rules, etc).

I have parented several children with disabilities, so I do understand the challenges. I think that some children with cerebral palsy tend to have obsessive-compulsive tendencies secondary to the brain damage. But that doesn't mean the parent has to wave the white flag; it just means that dealing with obsessions will be a challenge and might require professional intervention. I think we always have to think about what we can do to help our children fit in with their peers, learn to think of others, expand their world, and prepare them for the day when we won't be around to indulge their every whim.

[SueWag]

11:32 AM on 01/08/2012

I have a daughter with special needs and she also has certain issues or obsessions that seem to rule our family. Recently we were working with an occupational therapist for other things, but I noticed that the therapist had a very loving but challenging way of approaching many of these things and my daughter was able to work through some of them.

In Max's case, some of his problems, say with noise and crowded restaurants, make sense and I think should be accomodated. For others, I found it very helpful to have a therapist who totally understood kids with special needs, but also had a really good sense of when and how far to try and push her through it.

[Ambers mom]

10:53 AM on 01/08/2012

When my daughter was 9 she would only eat tuna macaroni salad. I mean for breakfast, lunch and dinner. She was adopted at age 4, with CP and is also deaf. She was severely underweight and had problems with solid food at first, so I was delighted when she showed a strong preference for any food. If Amber was going to love one food in particular, tuna macaroni seemed to contain all the necessary food groups. Amber is 34 today and still lives at home because we both prefer it that way. She loves food of all kinds from burritos to ham and cheese sandwiches to chow mein and fried shrimp. While Amber has never had a favorite color, she has gone through a sweats only wardrobe phase, then skirts or dresses only, then t-shirts. The hardest was the "pants and slacks in matching pattern" phase. It was a laundry nightmare to make sure the matching pieces were clean at the same time.

It is about control, and but us maybe not because of CP. The clothes in my closet are grouped by color. I own over 2000 books and they are shelved according to subject, then alphabetically by author. Same for CDs and DVDs. My photo albums are organized by year or by trip. I do all this for efficiency, but isn't that another way of saying I need to control my environment?

[LoveThatMax]

10:11 AM on 01/08/2012

Lisa, thanks to you for airing this question and Dr. Rubrick for his helpful insights. It was reassuring to hear that this can be typical behavior for any kid; I sometimes wrongly assume that issues can be attributed to Max's disabilities. (Actually, if you ask me which of my two kids are more challenging, I'd have to say my so-called "typical" daughter, who's 6 and who's a handful!).

At Max's party, we ended up letting him mostly be the one to use purple, which seemed OK because it was his birthday. And, an update: Max has decided he likes black...WITH purple. So at least he's amended his purple love to include black!

Jan, I agree, it's good to help your kid fit in. I once wrote a post about not buying Max a pair of purple Crocs because I thought they'd make him stand out too much.

Trixila: AMEN.

Barbara, I don't think obsessions like these are typical for kids with CP but then again, I have learned over the years that nothing is ever as typical as it seems.

Meryl, that's exactly what we're working on.

Scza (may I call you that?): As others note, it's about a balance.

And jzz55: Excellent thoughts. Actually, I am the one asking for whisky sours every evening at 6:30.

[Jan Loxley Blount]

12:30 PM on 01/06/2012

Kids, especially those with neurological difficulty or diversity like security - an obsession gives them security without hurting anyone else. But what's important is to manage it in such a way that it isn't ridiculed by other children.

[trixila]

01:42 PM on 01/05/2012

It's all about finding a balance that works for your child and family. Unless you are raising a child with disabilities or special needs, you cannot begin to imagine what it is actuallly like to do so.

[barbara jay]

09:04 AM on 01/05/2012

Until I read that Max has CP, I thought the disability here was autism. Do such behaviors occur more often in children with CP, or is it possible that he also is somewhere on the spectrum?

Beyond that, I hesitate to talk about Max's specific situation. But to address the title theme: when I was in grade 5 or 6, one of my favorite books was a biography of Helen Keller, who had grown up blind and deaf. Until a private governess/teacher, Annie Sullivan, was hired, Helen's family gave in to her whims even to the point of allowing her to eat by snatching food off their plates. (Or was this part only in the movie?) Her new teacher temporarily separated her from her family and put an end to the undisciplined behavior. While I don't think this tells us we should never cut a child with a disability any slack at all, I do think it demonstrates that all children need behavioral standards to live up to, particularly of the kind that demonstrate consideration for other people.

[Meryl Neiman]

11:11 PM on 01/04/2012

If Max were my child, I would indulge his obsessions only when they did not overly inconvenience or encroach on the rights of others. He does need to learn that although he is loved dearly, he is not the center of the universe. I would not drive in the right lane to satisfy him, and I would not tell people that the color purple is his alone to love. I would have told him that if he wanted a pottery painting party, great, but that he could not tell other children what colors to use. On the other hand, I would not make him sit in a loud restaurant and suffer. If we were eating out, I would try to find a place that offered pasta on the menu.

I would want him to learn that it is fine for him to control the color of his clothes and his sheets, but not the colors that other people like. When I'm driving the car, I will decide what lane is safe and appropriate for me to drive in. I think everyone (including Max) will be happier when some limits are set. Too much power is unsettling to a child. If you decide to make some changes in your parenting strategy, the transition will be tough but I think it will be worth it. No matter what you decide to do, you are a wonderful, loving parent and Max is lucky to have you!

[RockAutism]

11:53 AM on 01/08/2012

I agree with Meryl. My son has autism, and he has a terrible behavior problem (for a variety of reasons). We have learned that we accommodate when we can (wearing purple clothes, for example) and we push when he can't have a choice (restaurant seating, hotel room assignments, other children's choices). A meltdown or tantrum, however, can NOT make you change your decision, though. Stand tough! And I've learned that once Conor starts telling me what to do, that's a bad thing. So if he says "drive this way", I have learned to drive the alternate way because if you give in once, you're doomed.

[szczygielska1027]

06:53 PM on 01/04/2012

I can't believe how this kid is indulged. I was raised as a child with cerebral palsy and fortunately my parents didn't indulge me. I realized at an early age, that I was NOT the controller of the family, that each person has their own preferences and life experiences. These people are doing a great disservice to this child as he will not be developing the essential coping and social skills that will see him have a happier life in the long run.

[jzzy55]

05:44 PM on 01/04/2012

I don't see how indulging his particular perseverative (obsessive) needs is a terrible problem. He's not asking for whiskey sours every evening at 6:30, or wearing diapers outside his clothing, or anything inappropriate like that. On the other hand, perhaps in 15 years it will be whiskey sours, or worse, so even though right now a purple bowl and so forth doesn't seem so bad, it's the habit of perseverating that you're concerned about, I assume.
My son had to visit a nearby chicken coop daily for months when he was 2-3 years old. It was boring and a bit strange to me (I worried he was in the autism spectrum). Eventually it all came out in his artwork when he started drawing birds at age 3. Who knows where love of purple may take Max!
In any event I guess you should gently but persistently introduce other colors and interests. I have known several boys in the autism spectrum who had equally perseverative interests (in one case, the movie Matrix, in another, Spongebob). They're both in HS now and doing well, and have left Matrix and Spongebob behind them. So, this too shall pass.
Also, I assume Max gets behavior therapy of some kind, and surely this can be addressed there?