She Said It Was "Vital"

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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Sweets is almost 3 years old now. She has been enrolled in state early intervention since just after she turned 1, and now she is aging out of that program. The next step is an IEP (individualized education program) with the school system.

In preparation for our first IEP meeting, Sweets has been tested for pretty much everything, even though our main concern with her has been her speech and language delay. She has been getting speech therapy twice per week since 18 months, but she used to also get physical therapy (for gross motor delay) and developmental therapy (for cognitive delay). We dropped the other therapies last year, mostly for financial reasons, but also because it seemed like she had improved so much in the other areas that she probably didn’t really need much more therapy there anyway. We felt like speech was her obvious issue, and we should focus on that. If therapy had continued to be free (DT) or cheap (PT), we probably would have just continued, but when the state completely changed the financial structure so that we would have to 100% self-pay for all therapies, we decided she probably didn’t really need all those therapies anymore anyway and we could just focus on speech.

The current round of evaluations has shown that not to be the case after all.

I was surprised that her scores in PT were at the 4th percentile – the same as they were at 13 months when we started early intervention. Once your kid can walk and get around pretty well, I guess you forget that there is more to gross motor than just walking. I was more surprised that her cognitive scores were also at the 4th percentile. But she can do puzzles now! And find hidden objects! Ironically, she scored higher in language ability, at 8th percentile, than she did in PT or cognitive, and that is the area we had been most concerned about!

It is obvious that she is gaining skills, not losing them, but it is harder to see whether she is actually “catching up” or not. To me, it feels like she is doing so many new things, and she is! But that’s not the same thing as catching up. It doesn’t mean that she no longer needs therapy. It took me by surprise to see that she is still at the same percentile as she was two years ago.

So many people have told me that “she’s probably just a ‘late bloomer’” and not to worry, which may have led to some additional complacency. People love to tell you about someone they know who didn’t say a word until they were X age and then suddenly started talking in complete sentences. I’m sure they are just trying to give comfort and reassurance that everything is okay, that your child is “normal”. But that can make you feel like it’s not that important to get therapy, at least not yet. Or that you are overreacting if you do get therapy so soon. Maybe you should just wait and see.

Others seemed to blame her delays on me:
“She doesn’t walk because you wear her too much.”
“You are too easy on her – if you just made her work harder she would do it.”
“She doesn’t talk because you taught her to sign.”
Basically, she doesn’t need therapy, she just needs me to parent differently. Gee, thanks.

It is an odd contrast to the “early intervention is so important” proclamation that you often hear in the disability community. But when your child doesn’t have any diagnosis, just an undiagnosed developmental delay, it is hard to know if that still applies to you. Doctors have tested Sweets for all sorts of diagnoses, but all of the tests have all come back negative, leaving me to perpetually wonder if she really IS “just a late bloomer” and would catch up in her own time. Or, if I have somehow contributed to her delays.

Sweets’ cognitive evaluation report says “it is important to consider that intellectual abilities are less stable and predictive at this young age.” Which means that just because her IQ is 73 now, doesn’t mean that is necessarily predictive for what it will be in the future. She could still “catch up”. The report goes on to say that “it is vital that [she] receive appropriate intervention to address her language and cognitive delays so that she can improve her skills and intellectual disability can be prevented.” Basically, if she gets therapy now, then it is possible that she will improve her cognitive abilities with respect to her age as she gets older. And if she doesn’t, it is possible that in the future she could be classified with “intellectual disability”, previously known as mental retardation. The psychologist is not equivocal in her recommendation – early intervention at this time is vital.

I feel guilty that I voluntarily stopped her other therapies, because it looks like she probably still needed them. We lost about 9 months of therapy there. We will find out this month whether the school system is going to provide these therapies to Sweets through her IEP or not. But even if the school does not provide them, we will be sure to get private therapy for her anyway. At this point, I want to give her all the early intervention that I can get her.

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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.


• 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.