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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Visit 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.)

• Parenting A Child With Neutropenia — Jennifer at Hybrid Rasta Mama discusses the challenge of parenting a young child who cannot produce enough neutrophils to fight off bacterial infections.
• How I Love My High Need Baby — Shannon at GrowingSlower was shocked to find she is parenting a high-needs baby, but she’s surviving thanks to attachment parenting.
• We’re a Lot Like You — kaidera at Our Little Acorn talks about how her family is similar to others, even with all their special needs
• The Emotional Components of Bonding with Preemies — Having a premature baby can bring on many unexpected emotions for parents, but working through those emotions can bring about a wonderful bonding experience. Adrienne at Natural Parents Network shares.
• Raising a babe with IUGR: from birth through the toddler years — Rachel at Lautaret Bohemiet shares the story of how her son’s post-birth IUGR diagnosis affected his first days of life and gave her an unexpected tutorial in advocating for their rights as a family.
• When a grandparent has a disability — Shannon at Pineapples & Artichokes shares how she has approached explaining her mother’s disability to her young child.
• Taking The Time To Really See Our Children — Sam at Love Parenting writes about her experiences working with children with various disabilities and how it has affected her parenting style.
• Natural Parenting In An Unnatural Environment — Julie at What I Would Tell You gives us a glimpse into how she improvised to be a natural parent against all odds.
• Getting Through the NICU — Laura at Authentic Parenting gives a few pointers on how to deal with your newborn’s stay in the NICU.
• Living With Sensory Processing Disorder — Christy at Adventures in Mommyhood talks about the challenges that can come from living with a child who has SPD.
• Our rules for NICU – March Carnival — Hannabert’s Mom shares her family’s rules for family and friends of a NICU baby.
• Muddy Boots: Speaking Up for Special Friends — MudpieMama shares about the day her little boy stepped up and spoke up for his best “special” friend.
• Letter from Mineral’s Service Dog — Erika at Cinco de Mommy imagines the letter that accompanies her special needs son’s Service Dog.
• Blessings in Unexpected Places — That Mama Gretchen welcomes an inspiring guest post from a dear friend who shares about the blessings that come from a child with Down syndrome.
• Tube Feeding with a Blenderized Diet of Whole Foods — Erica at ChildOrganics shares her experiences with using real food when feeding her daughter who was unable to feed herself and needed a feeding tube.
• Abbey and Evan — Amyables at Toddler In Tow writes about watching her preschooler play with her friend who is autistic and deaf, and wonders how she can explain his special needs better.
• How to Minimise the Chance of a {Genetically Prone} Child Being Diagnosed with ADHD — Christine at African Babies Don’t Cry shares her tips on keeping a child who is genetically prone to ADHD from suffering the effects.
• Tough Decisions: Parenting With Special Needs — Brenna at Almost All The Truth shares what has been keeping her up at night worrying, while spending her days discovering just what her options are for her precocious child.
• Life with my son — For Dr. Sarah at Good Enough Mum, life with an autistic child is just another variation on the parenting experience.
• Dear Special Needs Mama — Sylvia at MaMammalia writes a letter of encouragement to herself and other mamas of special needs children.
• His Voice — Laura at WaldenMommy relives the day her son said his first sentence.
• What is ‘wrong’ with you’ The challenge of raising a spirited child — Tara at MUMmedia discusses the challenges of raising a child who is ‘more’ intense, stubborn, and strong willed than your average child.
• Tips for Parenting a Child With Special Medical Needs — Jorje of Momma Jorje shares her shortlist of tips she’s learned in parenting a newborn with special medical needs in a guest post at Becoming Crunchy.
• Parenting the Perfectionist Child — Mandy at Living Peacefully with Children discusses that as parents of gifted children, we are in the unique position to help them develop the positive aspects of their perfectionism.
• Montessori-Inspired Special Needs Support — Deb Chitwood at Living Montessori Now gives a list of websites and blogs with Montessori-inspired special-needs information and activities.
• Accommodating Others’ Food Allergies — Ever wonder how to handle another family’s food allergies or whether you should just skip the play date altogether? At Code Name: Mama, Dionna’s friend Kellie (whose family has a host of allergies) shares how grateful she is when friends welcome them, as well as a list of easy snacks you can consider.
• Only make promises you can keep — Growing up the child of a parent with a chronic illness left a lasting impact on Laura of A Pug in the Kitchen and what she is willing to promise for the future.
• A Mom and Her Son — Jen at Our Muddy Boots was fortunate to work with a wonderful family for several summers, seeing the mother of this autistic son be his advocate, but not in the ways she thought.
• Guest Post from Maya at Musings of A Marfan Mom — Zoie at TouchstoneZ is honored to share a guest post from Maya, who writes about effective tools she has found as a parent of two very special boys.
• You Don’t Have to Be a Rock — Rachael at The Variegated Life finds steadiness in allowing herself to cry.
• When Special Needs Looks “Normal” — Amy at Anktangle writes about her experience with mothering a son who has Sensory Processing Disorder. She offers some tips (for strangers, friends, and loved ones) on how to best support a family dealing with this particular neurological challenge.
• Special Needs: Limitation or Liberation? — Melissa of White Noise describes the beauty in children with special needs.
• How I Learned It’ll Be Okay — Ashley at Domestic Chaos reflects on what she learned while nannying for a boy with verbal delays.
• Attachment Parenting and Depression — Shannon at The Artful Mama discusses how attachment parenting has helped her get a clearer image of herself as a parent and of her depression.
• On invisible special needs & compassion — Lauren at Hobo Mama points out that even if we can’t see a special need, it doesn’t mean it’s not there.
• Thoughts on Parenting Twins — Kristin at Intrepid Murmurings shares her approach to parenting twins.
• ABCs of Breastfeeding in the NICU — Jona at Breastfeeding Twins offers tips for establishing breastfeeding in the alphabet soup of the NICU.
• Life With Michael – A Mother’s Experience of Life With Aspergers Disorder — At Diary of a First Child, Luschka’s sister-in-law Nicky shares her experience as mother to a child on the Autism Spectrum. It is filled with a mother’s love and devotion to her child as an individual, not a label.
• Raised by a Special Needs Mom — Momma Jorje shares what it was like growing up as the daughter of a mother with a handicap.
• Becoming a Special Needs Mom — Ellen at These Broken Vases shares about becoming the mother of a child with Down syndrome
• She Said It Was “Vital” — Alicia of Lactation Narration (and My Baby Sweets) discusses the conflict she felt when trying to decide whether therapy was necessary for her daughter.