Becoming Crunchy

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.

It is a huge honour to have Jorje from Momma Jorje guest posting here for this month’s Carnival of Natural Parenting. Please make sure to stop by and check out her blog and Facebook page if you’re not a fan already!

We were very lucky in that we got advanced notice that we would be having a child with special needs. We received Spencer’s Down syndrome diagnosis about mid-pregnancy. I kind of saw this as having a new hobby thrust upon me.

Spencer’s first therapy started with something as simple as putting a toy in his hands.

I don’t mean to make light of the situation, trust me. However, I now had a new passion to research. Isn’t that what you do with a new hobby? Then I came up with a plan to manage his care. I put together a notebook with tabs for all the different types of problems he might have, so we could avoid overlooking anything. I added paper to each section and jotted down which tests he needed to have and when.

I’d been told that babies with Down syndrome don’t really require much special assistance for the first 6 months. That isn’t entirely true. Aside from low muscle tone (which is very common, but Spencer does not have), babies with Down syndrome tend to have small mouths. The reason this is a problem is that their tongues are not so small. They tend to thrust them forward and out. So far, Spencer doesn’t do this too much, but he did need to work with a Speech Therapist when we were in the hospital. What? Speech? Yes, because they work with the mouth, not just speaking. It is hard to eat if you continuously push the food out of your mouth, ya know?

Spencer had his hearing tested in the hospital and again shortly after leaving. He’ll be tested again at 6 months old and then annually throughout childhood.

Spencer has required several extra medical appointments by comparison to “typical” children. (At 2 months old, he has already seen a pediatrician several times, a cardiologist, an audiologist, and has had 2 x-rays done, soon to be another. He also has blood-work to be drawn soon.) I had originally thought I’d purchase a Day Timer or other such calendar book, though I really love my Google Calendar. As a minimalist and being broke, I put off the purchase and never did get to it. Instead, I now print a month or two ahead (from my Google calendar!) and keep it in his notebook. This makes it easier to book follow-up appointments while I’m on site without the risk of double booking. You do, however, have to make sure to keep all calendars synced. I have to come home and immediately add appointments to my online calendar.

My quick tips, from my minimal experience parenting a child with special medical needs:

• Sync your calendars!
• Organize your specialists.
• Find a pediatrician that is a “Medical Home¹.”
• Keep copies of diagnoses and treatments for your own records.
• Try to group your appointments in a way that works for you. We have NO appointments next week, it will be a nice break.
• When you get overwhelmed, talk to someone! Get help if you need it.

Do you have some tips I’m overlooking? I truly am very new to this special needs job.

1 Medical Home is a style of management over chronic medical and behavioral conditions with compassionate care coordination. (Our doctor keeps close contact with all of the specialists we see and brings all their information together.)

Jorje is a slightly crunchy momma (and wife!) embracing her crunchiness and striving to be ever crunchier. She is passionate about breastfeeding, co-sleeping, baby signing, elimination communication and general attachment parenting, and is currently obsessed with hitting the road full time to unschool with her family.

***

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.
• 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.

19 Responses to “Tips for Parenting a Child With Special Medical Needs”