Tuesday, July 12, 2011

The Spaghetti Manifesto: On special needs parenting


The following was inspired by the commenters on last week's post who criticized my tendency to ask cooks at restaurants to cut up my son's spaghetti. If nothing else, I think we could all use a distraction right about now.

As the parent of a child with special needs, I am going to find ways to make life better for my child. And so, I am going to ask the chef to dice spaghetti, with one of his sharp cook's knife, because it will be easier for my son with cerebral palsy to chew it—and easier for him to feed himself. Chefs make accommodations for diners all the time. This is a small one. Sure, I could do this myself at the table. Except...

I am going to find ways to make life easier for myself, too. And so, I am going to politely ask to have the cook to chop the spaghetti when I'm at a restaurant because it's one less thing to do among the many, many things I do. This does not make me "entitled," as one commenter said. It makes me sane.

Do not judge me for such requests. Our kids may need adaptive equipment, but as parents we need adaptive strategies. Each of us have our own. Spaghetti served already chopped? Bring it!

Spare me the I-am-a-better-parent-than-you attitude. Just because you choose to cut your child's spaghetti and I choose to ask the chef to do it does not make you a superior parent. No, for that you do not win The Nobel Prize for Parenting (although if you ever showed up at my door with a plate of pre-cut spaghetti, I would totally appreciate it).

Do not assume that you know what my child does or doesn't need. Our children may fall under the umbrellas of "cerebral palsy" or "autism" or "Down Syndrome" or "ADHD" or whatever but each of our kids has unique needs, wants and challenges. Your child with cerebral palsy may not have any trouble picking up a spoon and feeding himself. My child with cerebral palsy has a lot of trouble picking up a spoon, scooping up food and guiding it to his mouth. Finely chopped spaghetti is what my spaghetti-obsessed child needs. And you know what? I'm going to, wait for it, ask the chef to cut the spaghetti.

Do not assume that I am "lazy," either. If I want to spend most of my time at a restaurant enjoying the kids and/or trying to placate my son (who gets unnerved in public places at times) and/or trotting after my son when he decides that he wants to roam around, instead of spending any amount of time chopping spaghetti, I will.

Let's lose that "It's the Mom's job" way of thinking. It takes a village. It really, really does. Go Team Spaghetti Sauce Max!

As parents of kids with special needs, we should be supportive of each other. Like strands of spaghetti, our lives can be slippery and wiggly and hard to control. Let's encourage, not condemn, each other.

49 comments:

  1. you go girl!
    If he's cooking dried spaghetti it's a minute's work for a sous chef to break it up before he cooks it.
    i see (and hear) a lot of martyrdom going on with being a parent of a disabled kid and it stinks. We are human and we deserve a break!
    Oi Chef! Cut the freaking spaghetti!

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  2. I can't believe people are criticizing you for this. People make infinitely crazier, much more burdensome requests in restaurants all the time for all kinds of reasons. If the restaurant has any class or sense of customer service, they will (and should!) honor your request. It doesnt' matter what your reason is for making it. If not, they shouldn't get your business again.

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  3. Amen to all of the above and the comments above as well!

    Kuddos to you for being a tuned in Mama and for advocating not only for Max but for yourself!

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  4. Go mama. I see no problem in asking for that little request if it makes your life easier and everything run smoother. It does take a village.

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  5. It would never occur to me to ask to have Mack's food cut for him.

    However.

    This is because his CP is relatively mild and he needs to learn how to do it himself. He has an adaptive knife for this purpose.

    Max's situation is different, as you pointed out.

    I do wish people would stop being judgemental of others, period. What's right for me might not be right for you, etc.

    I've stopped feeling bad about trying to get doctors, etc. to work around MY schedule instead of me making myself insane running around from appointment to appointment. I've been doing this for almost 13 years and I'm done trying to make things easier on everyone else to my own detriment.

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  6. I agree, 1,000%. Let the chef cut the spaghetti. I always ask for extra napkins before we even order a beverage. And I mean LOTS. And if the server doesn't bring me what I deem as lots, I ask for MORE. Yes, I could carry paper towels with me. But I also vote for things that make my life easier.

    This post makes me slightly thankful that my daughter's label/diagnosis is so rare, so unknown, that there isn't a set of expectations to accompany it. This isn't a contest, last time I checked. If so...I win for cutest red head!

    And commenters? If you don't have something halfway supportive to say, just sit on your fingers. Let's try supporting each other in our nook of the SN blogosphere. There is plenty of judgement and weird staring elsewhere in the world.

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  7. I fully understand your request for the cut-up food.

    However, depending on the resturant, you really shouldn't get too upset at the chef for not cutting it.

    I know it seems like a small thing, but as you pointed out; it takes time. While a simple request such as that should be honoured, not all resturants will. Just as not all resturants will honor menu changes.

    I don't think people were upset with your wanting the food cut up... so much as your 'anger' over it not being done. Ok. The chef didn't do it. But it happened. It's not a terrible thing. Its not like offensive illustrations or perfectly abled(people without plaquards) individuals using parking spots.

    Sometimes we have to pick our battles.

    If you find a resturant that doesn't cut the food you can do two things: explain before-hand that the food needs to be cut for choking/feeding needs. For instance, I once went to a resturant that had a 'no subsitutes' note on their menu. I wanted a particular salad. However, I couldn't have the dressing they served with it. I said I had allergies and would like either no dressing or just vinigar/oil.... the changes were made.

    Let the staff/ manager know afterwards or during that you are upset your simple request wasn't made. Be kind. Not defensive.

    In some resturants based on speed, how the kitchen works, how the head chef demands things be presented... these things aren't always so easy to accomidate. Sometimes, you have to explain 'why'.

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  8. Well said. If you order steak you ask for rare, medium or well done, why is it wrong to ask for Max's spaghetti chopped. Hey if Max wants his spaghetti purple they should make it purple, your the customer.
    Blog land is a crazy place sometimes and people waste far too much time nit picking and criticising the most ridiculous things, maybe they should spend more time with their kids instead of spreading their negativity.

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  9. I must have missed the first controversial (ha!) post, but let me say, you are brilliant for thinking to ask! I never would have thought of it.

    There are so many things we can complain about with the world, I can't imagine why anyone would be upset with you over this. I think some people are just fundamentally unhappy and need to take that out on others.

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  10. I'm sorry, but anyone who complained about asking the chef to cut the spaghetti is missing out on some of the good things in life.

    These are the same people that buy a whole head of cabbage when they only need half because they don't know they can ask their produce man to cut it in half for them. Most of the time, all you have to do is ask for these little conviences. Their loss.

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  11. Woo to the hoo, Ellen! Going out is a trial for us too, but we do it anyways because it is important. Jakey isn't a spaghetti eater, but we have learned that we need to order "pizza" (can be real pizza or quesdilla) as soon as we are seated since Jakey does not understand time. A few times, that has been a special request, but it's totally worth the peace and time as a family, especially for our typical daughter who NEEDS us to do things as a family. :)

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  12. I didn't comment on the first spaghetti post cos it got a bit scary! But I wanted to say, I felt it was obvious the chopped spaghetti thing was something you'd put on your personal 'Argh' list and really, I think WE get to choose our own 'arghs', even if they seem odd to others. My current argh is Mikey getting chicken pox twice in one year. Bring on the antihistamines! Keep going, beaut. Xxx

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  13. woot! go ellen! =)
    and I TOTALLY agree that it takes a village. I dont know what I would do without my support. so true!

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  14. I think that is a reasonable request. If I were a chef I would gladly cut up his Spaghetti for you (or anyone who asks)

    Oh by the way, (I don't know if you have found this yet )but for when you cook spaghetti for Max at home, they have a brand of pre-cut Spaghetti! Way cool! I can't remember what brand makes it, but I have seen it at one of the grocery stores near me. :)

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  15. Great post - to which I give a rousing YOU GO GIRL! :)

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  16. Okay, I see your point. My point of view as a chef is maybe one you haven't considered. You cannot believe the insane and rude request and comments I have experienced over the years. It came to the point where I bristled at any request. Being in the kitchen, not seeing the customer (or having time too) and getting a request to cut a customer's food for them would, at first glance sound ridiculous. That's why I responded the way I did. It do not see to be that hard to cut spaghetti, or that hard. Though sometimes, the small things keep us SN parents sane. Anyway, Ellen, if Max came into my restaurant I would cut his spaghetti. And give him extra sauce. Sorry if my previous comment upset you, I hope you understand my point of view.

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  17. I've seen pre-cut spagetti too. In the green box...whatever brand that is! LOL

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  18. Oh, I am cheering here at my computer screen! You said it, Ellen!

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  19. You rock !!!!!!!! Not only do I ask for things to be cut up for my son where we are eating out, I ask for myself as well. I'm visually impaired and I'm sorry I would rather eat then wear my food because I was trying to cut my meat or what ever and it ended up in my lap.

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  20. and now...i too...am going to ask the chef to "cut the spaghetti!!" thanks for empowering me :)

    (btw...just so my husband won't roll his eyes, i plan to forward this blog post to him too!)

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  21. This isn't about restaurants, but the school cafetaria.....they give my students HUGE pieces of everything, uncut, unpeeled fruit, forks (no spoons) and so on. I bring a large pair if scissors to every meal and a cooler supplied with spoons, regular ketchup and salad dressing bottles, non-stick pads so their plates don't move, any special cups and the like. I "fix" every single child's lunch so the they are able to actually eat it everyday. I don't think it's unreasonable to ask a restaurant to cut up your child's food, put in on a smaller plate, provide them with whatever will make their dining experience better. For too many of these children, food IS an issue. The least we can do is try to make it a small one.

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  22. Well said and I totally agree! Have you seen the Cut Spaghetti that Barilla makes - http://www.barillaus.com/Products/66/cut-spaghetti.aspx? Maybe that's the answer for you at home and for chefs in restaurants! LOL!

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  23. Thanks, jtj, for returning! Now you better understand me and I better understand where you're coming from because you're right, I've never been a chef, and you should pretty much thank God for that as my cooking skills are deadly. I promise to never come to where you work and order the artichoke salad, hold the artichokes, with frisee lettuce only and heirloom tomatoes sliced in quarters (not halves) and organic carrots shaved into those cool curlique things and a sprinkling of caviar and dressing on the side, perhaps just put it in a takeout container so I can have it for tomorrow night's dinner. Deal.

    SpEdTeach4Nine, the world needs more teachers like you. Could you maybe get yourself cloned?

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  24. Sheila! That pre-cut spaghetti is like the MESSIAH or something! Thanks to you and others for leading me to it, my life is forever changed.

    Would it be rude to BYOB (bring your own box) to a restaurant? He, he.

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  25. I actually had someone order something like that Ellen. Thank G-d I am not a chef anymore. My eyebrow started twitching when I read that order ;-) Are you going to share the name of the SN camp Max went to recently? I understand if you don't want to, but we are always looking for ideas for our son.

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  26. I get it. Max loves spaghetti and you probably can't even count the amount of times per week you cut spaghetti. So, you go to a restaurant and make a small request, no big deal. I have been with people at restaurants that ask if the lemons are hand sliced or machine sliced?! I guess they didn't want hands touching their lemons. Whatever! Point is, chefs and servers get weirder requests than cutting up spaghetti.

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  27. haha - I can't believe someone has nothing better to do than to criticize you for asking a chef to cut spaghetti

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  28. I got me some apologies here, Nicole!

    Exactly, Shana!

    jtj, feel free to email for info on camp.

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  29. hmm.. don't be angry if the kitchen can't do it. It is just that they either don't want to, can't because it is a food restaurant and they are busy and they just don't care to accomadote you. So then don't go back, speak with your dollars. No one is judging you and apparently you feel that they are and why are you so touchy about it? You are getting super defensive over something so minor, just don't go back or KINDLY ask that they do this because he has a choking issue. I am sure if you mention that they will be more game as they don't want to hemleich anyone in the restaurant. Don't get so testy about it. You opened the gate with this blog about your family and your life with a special needs child so be prepared to take the critiscim that comes with it and not just the good vibes we want to have all the time.

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  30. Oh, Okaaaaay, Calitransplant, I will take your advice and try to remember to keep my sense of humor, and thank you so much for offering to come to the restaurant and cut Max's spaghetti the next time the chef cannot accommodate us! Can I get your cell number, please? Will you be around this Saturday night? I think we're going out to dinner with the kids.

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  31. I believe you have every right to ask the chef to cut up spaghetti. Yea, you can do it but you're eating out and you don't want to waste time doing something he/she can do for you. Pasta is something that is so cheap but you will pay a pretty penny for it when you order it at a restaurant - chefs know this so what's the problem? You go Ellen! I'm behind you 100%

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  32. I haven't read through the comments, but it looked like someone already mentioned this...cutting up spaghetti is a pain. The chef probably doesn't want to use his sharp knives after the spaghetti has been plated. However, breaking the spaghetti up into smaller pieces before cooking it is easy-peasy. I'm sure most restaurants would have no problem doing that! Any restaurants that do, you just don't go back to!

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  33. Good job, Ellen. I have actually made similar requests for Emma, and I never thought that of it as being too much. (Sometimes Emma can be a bit impatient, waiting for me to do the chopping at the table. Believe me, that is not good for anyone.) I guess this helps me see both sides of the issue. I do agree that it takes a village, and I would like to think that Emma would be treated kindly if she needed her pasta chopped when she was older and didn't have me or anyone there to do it for her. I would hope that that someone in a restaurant (staff in particular) would help her with compassion simply because that is the hospitable thing to do. It breaks my heart to think that she may struggle with this kind of thing the rest of her life.

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  34. I'm just sorry it never occurred to us to ask the kitchen to cut up our daughter's food! Argh!
    I will from now on, that's for sure.
    Great blog.

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  35. Nicely said. it's crazy what other parents pick on other parents about. You have a right to chopped Spaghetti!

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  36. Amen, of a mother with a special needs son, I completely understand what you are saying. I have been dealing with people not being understanding to my son conditions. I have heard so many times from the school that must special needs kids, parents flat out don't care. I like that I have found a place when there are other moms and dads standing up for their kids. If we don't then who will?

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  37. Love your response, admire your strength! Thank you for providing such great perspective!

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  38. Rude and/ or unhelpful wait staff is in part why we rarly if ever eat out.

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  39. Ellen, I so appreciate your reminder that we have to make our own lives easier, just as we do for our kids. We are in this for the long haul and we need to conserve energy for that. Sometimes we have a really tough row to hoe...

    It's really, truly okay do what it takes to simplify life--with no apologies (okay, preaching to self here. I'm the Apology Queen). Maybe it's having a chef cut up spaghetti, maybe it's gracefully accepting a parking placard when the doctor insists we use one, maybe it's actually utilizing some of those respite hours our kids are granted. Sometimes it's even just letting someone hold the door for you as you push the wheelchair (why is that so hard?).

    A wise, wise mentor friend of a child with the same dx as my daughter once said, "Take your perks where you get them. You have enough work as it is..."

    So if that means asking for special prep at a restaurant, so be it. No apologies!

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  40. after reading this post and the comments and the prior post and comments i don't think i will ever look at spaghetti the same way again.

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  41. I just started reading your blog and didn't see the initial controversy. All I thought while I read this was, "What a brilliant idea!"

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  42. My 16 yr olds have CP and I think it is a great idea to ask the staff to cut their food in the kitchen! They are embarrassed to struggle with this task in public and they certainly do not want me to cut their food where others may see. They have plenty of opportunities to practice their cutlery skills in the privacy of our home. Thanks for a wonderful idea!

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  43. If that's what you want to do, then go for it! Your request is not hurting anyone. And if a chef wants to complain about that, he should see that in the amount of time it takes to complain, he could just do it and be done already.

    I don't know if you use review sites like Yelp, but if you do, make note of how you are treated with special requests. It could be something that other parents in th same position would appreciate. I know I personally make note of how people treat my son, especially when they do so in a positive manner.

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  44. I totally agree. We all spend too much time judging each other when we have no idea what it is like to walk in the other person's shoes. This seems to be something that happens across the board with all parents and I get so frustrated. None of us is perfect. We all make mistakes. We all make things up as we go along. So how about cutting each other some slack!

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  45. Late to the party, But....

    As a chef I can tell you that the person working the saute line (the one in charge of the spaghetti, which is pre-cooked and portioned in the morning) has a pair of tongs and no knife. He also has 30 orders and someone yelling at him to get the next plate out 5 minutes ago. And in order to cut your son's spaghetti he has to leave his post, go find a knife, cut the pasta, take the knife to the dish pit, and get back to work. And he's going to be called a 'c*cksucker' for it by the kitchen manager. And he's not getting paid extra for it, and he probably doesn't speak enough English to understand the request anyway.

    The server is the one who should be doing it. He's got access to cutlery, won't spend the rest of the night backed up from it, and he's the one you'll be tipping. Food prep is kitchen job... customer service is wait staff. This one falls under customer service.

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  46. I have been reading your blog for such a short time, but I'm so curious by everything you write. When Max made his knock knock joke, I laughed too. I tell everyone I meet about your blog.

    Well, this topic really upset me (even if I'm 5 months late). I use to be a server at iHOP, so what's the difference between making a special face on a pancake versus cutting up spaghetti. Yes, there were probably days that I wouldn't have appreciated the extra 2 minutes to my night, but seeing Max would make me want to do it.

    While I was a server, the only time people who needed the extra help only came in during the day with fewer people because of the rudeness of others. There should be no judgmental comments on your blog, because you're experience is vastly different than everyone else's.

    And as to CaliTransplant, how can you be so rude. She did not start a blog to get rude comments. She just wanted to share her experience, and her experience is cut up spaghetti.

    This is what's wrong society as a whole. We get behind our computers and we say things that we would never say in real life. I bet not one of those people who commented on either story would say any of that to your face.

    I am so sorry that no one stood up for you in the original story. I read it and felt you were ganged up on.

    Keep on getting that spaghetti cut up!

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  47. I ask for plain spaghetti, because I have a sensory issue with chunky, savory sauces. I also used to like the shorter strands, because I used to choke on them. Sometimes, I still do. I associate sauces with puke, so I don't order the sloppiest think on the menu (unless it involves ice cream)

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Thanks for sharing!



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