Guest Post from Maya at Musings of A Marfan Mom

Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs

This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.

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Today, I am honored to share a guest post from Maya, who writes a blog I always enjoy, Musings of a Marfan Mom. I hope you will enjoy her post and stop by for more.

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I am the very lucky mama to spirited two little boys: M and Baby J. M has a love of books, his toy food, hugs, and Sid the Science Kid. Baby J adores following his older brother around and doing whatever he is doing. Both boys have special needs: M has autism and Baby J has Marfan syndrome, a connective tissue disorder which I also have.

 

Today I’d like to talk about parenting M in particular. Before I had children, I knew I identified most with the “gentle parenting” philosophy. After M was born, I breastfed, cloth diapered, made homemade babyfood, bought gender neutral toys, etc. etc. And M was a happy baby! He was happy with my husband, happy with me, and happy with any stranger he came across. I patted myself on the back.

 

Except, as M got older, he wasn’t interested in us. He’d spend hours paging through books in a corner, but wouldn’t play with toys or demand (or accept) attention from me. I felt like a failure of a mother.

 

M was diagnosed with autism at 16 months old and everything we thought we knew about parenting was turned on its head. He is 3 now and we’re still learning, but here are some things we’ve found that work for our family.

 

Use the words no & stop sparingly. This was something we was had already been trying, but it was great to hear a behaviorist endorse this philosophy as well. We try to save no and stop for safety situations, like when M bolts. Otherwise, we try to word things in terms of options. For example, instead of saying Stop bouncing the ball in here!, we might say Balls are not for throwing in the house. Balls are for outside. Would you like to play with the ball outside?

 

Plan child-centered activities. This does not mean that we only do what M wants to do! Instead, we consider how he is going to feel in a given situation and try to accommodate him as best as we can. Sometimes this means that we forgo an activity (like a birthday party to Chuck E Cheese) because we know it will be too much for him. Other times we modify the activity, like going out to eat at an earlier hour, when it will be less crowded. And if something is not up for negotiation (Thanksgiving with extended family, for instance), we work to prepare M through social stories and sensory breaks.

 

Choices, choices, choices! Life is SO much easier for all of us when we present M with choices instead of an order. With his sensory issues, I think he often feels out of control, so one way he can feel more in control is by refusing to do what is asked of him.  This is frustrating and can result in me losing my patience. However, if we give M a choice, he feels in control and we accomplish what we need, so it’s a win/win! For example, M must get washed up. But, he can choose what toys to bring in the tub, whether he’d like a bath or a shower, and whether he’d like his hair washed fast or slow.

 

It’s ok not to be perfect. I struggle with this. Being a special needs parent requires a lot of flexibility and patience and, much like (I’d assume) typical parents, we don’t get it right all of the time. I’m having to give myself permission to not be the parent I thought I’d be and instead try to be the parent my kids need me to be. That means realizing some things I’d thought were very important are not as much. When Baby J entered into early start at 7 months of age for his developmental delays, I slowed down cloth diapering and eventually quit. Between the two boys we had 2-3 therapy appointments a day and it became too much laundry. But, now I’m cooking dinner more often instead of fast food. What matters at the end of the day is whether your child feels safe and loved, not what looks you got at the supermarket when your child had a meltdown or what another blogger in a seemingly similar situation is able to accomplish with her time.

 

Parenting two kids with very different special needs has challenged me in ways I had not anticipated, both physically and emotionally. I am so grateful for the opportunity to be their mother though, and learn what they have to teach me.

 

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Maya Brown-Zimmerman is a patient advocate and volunteer with the National Marfan Foundation. She chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom. You can also find her on Facebook and Twitter.

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Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!

Please take time to read the submissions by the other carnival participants:

(This list will be live and updated by afternoon March 13 with all the carnival links.)

26 thoughts on “Guest Post from Maya at Musings of A Marfan Mom

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  3. “” instead of saying Stop bouncing the ball in here!, we might say Balls are not for throwing in the house. Balls are for outside. Would you like to play with the ball outside”” — well said

    Maya- You just gave the perfect explanation for the parent in “You don’t have to be perfect”

    God Bless!!

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  5. Maya, you must be doing a great job. I cannot imagine myself handling a situation similar to yours. Your children are lucky to have you as parents. This is the first time I have heard of Marfan syndrome and will be reading about it.

    I agree with you that we should be sensitive to what our children try to say to us (verbal, more so non-verbal). We should understand them, plan out their day (ours too) and lay out options that allow them to have a part in decision making (even those with special needs). Children really need structure and learn/feel best when we establish that.

    As for saying No, don’t do this or that, all parents should already know that by now. It is a conscious effort to say positive things and turn that around.

    XOXO,
    Les

  6. That is so true! I hadn’t thought about that, but I definitely do not want my children believing they must be perfect. Thanks for another reason to remind myself that perfection is not necessary! :-)

  7. I’m having to give myself permission to not be the parent I thought I’d be and instead try to be the parent my kids need me to be.

    Oh, yes. Whether or not our children have special needs, this lesson is the one I think we all have to learn.

  8. This is so great. Thanks for sharing your experience, Maya, and thanks to Zoie for hosting! I think being aware of your child’s threshold for challenging activities (like a birthday party or family dinner) is such a helpful one for any family, and especially true for a child with autism. I think it’s really cool that not mindlessly saying “no” and “stop” was so endorsed by the experts, too!

    By the way, I’m all about not being perfect, and I don’t have the reasons you do. So keep rocking that! ;)

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  10. Thank you for your tips/suggestions on gentle parenting in exceptional circumstances. I especially appreciate the fact that one of the therapists suggested only using no and stop for dangerous situations.

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  16. It sounds like in just a few short years you have gained a whole lot of wisdom.

    We mom’s are most often too hard on ourselves, and with the sharing of your story you encouraged me to be easier on myself. Which of course, directly affects the happiness of my children.

    Thank you for sharing your story.

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  20. I have admired you since I first read you blog and this post is another amazing example of the kind of thoughtful mother and woman you are. Your children were so wise to choose you.

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  22. I love allof your points, but the one that stands out to me the most is that it’s ok not to be perfect. Regardless of need or ability, I feel it’s important for all parents to model this, because we don’t want our little ones thinking that perfection is their standard, either!

  23. I loved this post, Maya! I know we’ve talked about some of this before, but I can really relate to some of what you deal with with it comes to the sensory challenges that M deals with along with autism. Options and choices (and using “no” for safety only) are all things we do a lot in our family. I think your last point about not being perfect is really important, too: there’s an idea we all have about what parenthood is going to be like, and when unexpected things (like having a child with special needs, whatever they may be) get thrown into that, it seems like there’s no choice but to readjust our thinking accordingly. Thanks again for writing this, Maya, and for hosting, Zoie!

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