When Special Needs Looks "Normal"

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.

---

There are lots of ways that special needs can be difficult to see with the eyes. When a child uses a wheelchair or has another obvious physical indicator of a "disability," it's easier for us to know that they might need special concessions (or maybe not). At the very least, it clues us in to the fact that we should take extra care with our language and also try to be helpful to them and their parents in whatever ways we can.

You may see a kid who's having a great time
and being silly; I see a kid who's overstimulated
and needing to chew to keep himself calm.

My son Daniel has Sensory Processing Disorder (SPD). It's a neurological condition that affects the way his brain interprets input from his senses (sight, hearing, touch, taste, smell, vestibular (balance), proprioception, and interoception). Daniel looks, talks, and often even behaves like any other neurotypical child, and he is even advanced in several areas of development (like fine motor skills and language). However, the way he experiences the world isn't the same as other kids. He experiences a "fight, flight, or freeze" response in his body (and he may even experience pain, though we don't know) when certain things happen which other children would take in stride. The intense sensations that Daniel experiences can trigger a sensory meltdown, which is no fun for anyone, let me tell you!

Just a few examples of things that are difficult for Daniel:

• He has trouble walking on uneven surfaces and passing from one type of surface to another (like from pavement to grass) because he doesn't feel steady and he's unsure of what to expect based on how the surfaces look in comparison to each other. He intentionally steps over cracks in pavement.
• He is overly responsive to loud noises and to certain frequencies of sound. He has recently learned the word "loud," which he's using to describe any sounds that feel uncomfortable to him. 
• He has difficulty with discrimination, being able to locate sensations in his body when they happen (he might bump his head and then just look confused, not knowing where the sensation is coming from).
• He has trouble with locating sounds when he cannot see the source clearly. For instance, if his back is turned to me and I walk away from him to where he can't see me and then call his name, he is unable to walk toward my voice and he becomes frightened. He also is frightened by stuffed animals that play music and when people talk while hiding their mouths with their hands.
• He has a lot of trouble with emotional regulation and self-soothing in general, as well as with maintaining normal elimination and sleep patterns when faced with unfamiliar situations.

As you can see, the things that are troublesome for Daniel are very specific and nuanced, and no two kids with SPD have the same set of challenges or triggers. This is why I believe it can be hard to recognize and understand for people who aren't experiencing it every day.

Choose Your Words Carefully

I've written many times before that I believe that the language we use to talk about things says a lot about the way we actually feel about those things. For this reason, I believe it's very important to be careful with the ways we use language, and to be mindful of how our words may be affecting the people we're saying them to.

One of the ways I've felt disregarded during my experience parenting Daniel is through others' use of dismissive language. When I describe the difficulties we're having at home, and explain his sensory symptoms, I'm often met with (obviously well-meaning, but) dismissive replies, such as:

"But he's so good!"
"He's so happy!"
"He's so well-behaved!"
"He's such a little darling!"
"Are you sure we're talking about the same kid, here?"

It's hard to hear the cashier at the grocery store, for instance, say these things because I feel like I just have to grit my teeth and chuckle, or thank them, since it's difficult to concisely explain to people what's going on in the moment. I find it frustrating to receive these kinds of comments from strangers when I know that once I get in the car (or home, or whatever), Daniel is going to have a meltdown from enduring all the stimulation at the grocery store. What I really want to say in the moment (which is the whole truth) is that there will be consequences from this trip to the grocery store.

It's also hard with extended family and friends because everyone just wants our lives to be easy and happy all the time, so they seem eager to find an explanation that will lessen the impact of the experience we're having:

"It's a phase; he'll grow out of it."
"It's his personality; my son was just like that, and he turned out just fine!" 

This was a day I varied from our routine:
running an errand before nap time.
Daniel didn't nap at all that day.

The fact is, they usually only see him when he's holding it together. Because of the way Daniel deals with his sensory symptoms (with delayed reactions to negative events) he acts like he's fine around people he's not totally comfortable with (read: everyone who doesn't always live with him) and then he completely melts down at night when he's not around them anymore. He also has meltdowns more often and is more dysregulated than usual for several weeks after we have someone visit. This happened most recently when my sister came to visit: Daniel's sleep was very disrupted after her visit, he began having night terrors, and he's just now getting back to his normal nap and sleep schedule.

It's by far the hardest to stomach when medical professionals use dismissive language with us about Daniel's sensory symptoms because they're supposed to be the "experts," and I'm paying them to give me comprehensive advice and help. It can be extremely difficult to hear that they don't believe us, or (worst of all!) that they think his troubles are our fault.

Here are just a few of the gems I've gotten from various medical professionals:

"Your stress is stressing him out, which is making him cry all the time."
"Hire a nanny—you clearly both need a break from each other."
"Why haven't you done Ferber yet? Babies can't learn good sleep habits if you don't let them cry a little first."
"It's just colic."
"It's probably reflux."
And, my personal favorite, "I've never heard of a kid having a delayed response to a triggering event."

There clearly needs to be more education about SPD and sensory symptoms in the medical community, not only so doctors can be more sensitive to parents who are going through this, but so that they can make the appropriate referrals (to an OT and/or Developmental Pediatrician who specializes in SPD) so the child can get help as early on in their development as possible.

 

What are some alternatives?

I've come up with a few tips for families, friends, and even strangers, for how to best interact with families dealing with SPD. Maybe these things won't work for every family of a kiddo with SPD, but I think they're pretty universal, and most of them can be used to help relate to all families with children (regardless of whether the kids are neurotypical or not).

1. Don't make assumptions. I know—it's incredibly difficult, but there are lots of things you don't know about a person (even a child) simply by looking at him: his race, gender, sexual orientation, religion, and in my son's case, whether or not his brain works like most peoples' do.
2. Take what the child's parents say at face value. They know this child better than anyone else, so try your best not to be dismissive of their feelings or their experience with your words or actions.
3. Don't take the child's behavior at face value. If there's one thing I've heard over and over from other parents of kiddos with SPD, it's that their child's sensory symptoms are often mistaken for other things. The parents get judged by strangers for not being strict/effective disciplinarians when their child is having a sensory meltdown in public. In Daniel's case, his outward appearance around unfamiliar people projects happiness and enjoyment of the situation. As his parents, Jaymz and I can tell when Daniel is holding back his real feelings about a situation and saving them up for a big meltdown later (when he is at home, alone, with "safe" people: us.)
4. Validate the child's feelings when he is having a meltdown. Being dismissive of their experience of the world just makes it harder for them to navigate through the hostile environments of everyday life. If the child needs to wash his hands every time he gets them dirty, that's OK. Don't tell him he's OK; let him indicate to you how he is feeling. (Even if you think he's having a disproportionate reaction to what's happening to him, it's your job to acknowledge that and ease him through it, not to be dismissive or judgmental.)
5. If you are close to a family with a child who has SPD, put in the effort to understand the way that the child's special needs affect the family's day-to-day life, and how you can make anything easier for them by something that you can do (or not do) to help them.
6. Just because the child seems to be having a positive reaction to things you're doing with him, doesn't necessarily mean that he's enjoying what's going on and/or that it's beneficial for him. Check in with the parents a lot to make sure what you're doing isn't harmful to him in any way. Try to get some direction from them about how you can best interact with that child in ways that won't disrupt their lives as much. (For example: Oftentimes, children with SPD will engage in self-stimulation behaviors which are not actually therapeutically beneficial to them. Though they may crave these types of stimulation, they are not good for their brains, and there are alternative activities that can be better in those instances) Spinning and swinging are two examples of (the many) activities you should check in with the parents about before doing with a child who has sensory issues.
7. Be sensitive to the family's daily routines. Structured days with lots of routines help kids with SPD to predict what is going to happen next during the day. It helps them to feel in control and know what to expect, when a lot of their experiences are so intense and out of control. Families with kids with SPD may have certain times of day that are better than others for varying from the routine (say, to have a visit with you!) without causing as much disruption.
8. Be engaged. Be willing to learn more. Ask questions. Be curious. Show interest in the parents' experience, but please don't pity. Take caution before giving advice.

---

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.