Life with my son

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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For the second time, I'm taking part in the Carnival of Natural Parenting despite not considering myself a Natural Parent, in response to a topic that happened to be relevant to my unnatural self as well.  The topic this month is 'Parenting With Special Needs'.

My son Jamie, now aged seven, is autistic.  He's not what you might think of when you think of an autistic child; he doesn't spend his days sitting in corners rocking unresponsively, locked into his own little world.  He's fully verbal, attends a mainstream school, and loves to tell you about his computer games, cooking, and the things he's learning about space and planets at school this term.  But, if you met him, you'd pretty soon notice some unusual things about the way he acts. 

When I say that he loves to tell you about his computer games, that doesn't really cover it; he will talk incessantly about his computer games, and, while I appreciate that this is within the bounds of normal behaviour for a seven-year-old, the way that he does it isn't.  He'll describe the game in obsessive detail without ever giving you any sort of general explanation of what it's about, unable to see the wood for his focus on every tree.  If you try to stop his monologue to do something else it will freak him out.  So will any attempt to stop him when he's fixated on an idea or way of doing something (including an idea that someone else in his life should do something in a particular way).  It's often not obvious in advance when that is - he's not one of those children who need every little detail of the routine always to be the same, but, when he has got it into his head that things should go a particular way, any expectation that he change his plans without warning will cause all hell to break loose.  He doesn't really understand how the way he acts can affect the feelings of others.  He doesn't really get the normal social conventions that other people pick up easily enough to take for granted.  He manages at school only with full-time one-to-one assistance from a teaching assistant and a lot of flexibility on the school's part about how much of the curriculum he actually does. 

Communication can be a problem because, while Jamie superficially seems to have very good verbal skills, but it really isn't the way that he most easily takes things in, and I've had huge problems with getting his attention to ask him or tell him things.  This can be extremely frustrating, all the more so because he seems able to understand perfectly well when he wants to and it's so easy to fall into the trap of thinking he's just being naughty and ignoring me.  But he isn't; he genuinely has a problem processing what he hears, and the fact that he often does manage to deal well with that problem doesn't change the fact that it is a problem.  He's a lot better at it than he used to be, but it will never be the easiest way for him to take things in.

The key, with this, has been to write things down.  Whether it's something as simple as the choices available for lunch (for a good while, I had a standard menu saved on my computer to print out a list of choices from which he could pick) or a more complicated issue that needs a social story to help him understand what he should be doing, writing rather than talking has been a huge help.  It seems appropriate; my husband and I met on a social group on the Internet, and now, twelve years later, here we are communicating with our first-born child in writing.

I've written before about my attempts at trying positive discipline with my children.  Jamie's difficulty in communicating his wishes definitely made this harder at first.  Before I'd ever heard the term 'positive discipline', I'd devoured Faber and Mazlish's 'How To Talk So Kids Will Listen And Listen So Kids Will Talk', with their description of solving discipline problems by presenting the dilemma to the children in an empathetic way ("Oh, no!  You and your sister both want to have the yellow cup!  Looks like you both really want it!  What can we do?") thus inspiring the child to come up with his or her own answers.  I loved the idea and looked forward eagerly to trying it out with my own children as soon as they were old enough (I read it when Jamie was a toddler).  But, for a long time, it was an absolute non-starter for Jamie - he would carry on screaming with no concept whatsoever of the possibility of trying to solve the problem, leaving me wondering unhappily what I was doing wrong.

(I eventually found Ross Greene's books 'The Explosive Child' and 'Lost At School' to be useful reading here, although they aren't about autistic children; they're about working with children who don't have the normal social skills and do need a lot more prompting through the whole problem-resolving process than the children in the 'How To Talk...' examples.  They didn't teach me anything very new about the process, but the books did help me to realise that it was OK for my son to need quite a bit more guidance through the procedure, and that doing so was helping rather than stifling his development in this area.)

But, as the years have gone by and Jamie has matured further, I've found that problem-solving is starting to work.  It's working more often in the short term, and, little by tiny, tiny bit, he's picking up more of the skills of self-control and conflict resolution that I want him to learn in the long term.  And, as I've learned more about the principles of positive discipline, I've realised that they are, if anything, even more important with my son.  Instead of seeing unwanted behaviour as 'naughty' and something to punish him out of, I've learned to see it as his lack of ability to behave appropriately, and his need for more teaching and guidance.  Or as his response to the stresses that freak him out and that I need to learn to understand.  Often when Jamie acts in a way that seems 'naughty' or inappropriate, it's because some seemingly ordinary part of life is freaking him out in a way it wouldn't freak out another person, or because, for all his verbal ability, he's just not very good at explaining his feelings to us. 

I remember one occasion, a couple of years back, when, in the middle of a screaming fit, he made up a rule that Katie and I weren't allowed in the living room.  I don't remember the exact rule - I think he defined a narrow age range that was permitted in and that would have excluded both me and Katie while including him - but I do remember him screaming it at us, screaming over and over "You are not allowed in the living room!  Get out!"  I was outraged - how dare he try to make up rules about who was or wasn't allowed in a room of the house that we all shared?  And then I suddenly thought about what it must be like to be a little boy with autism who really needed a few minutes on his own, just a bit of space, but who wasn't good at explaining his feelings in words and was feeling too overwhelmed by life right now to phrase his reasonable request in a socially acceptable way.

"Jamie," I asked him, "do you mean that you want to be on your own in the living room for a bit?"

"Yes," he said a bit more calmly.

"Then the way you say it is 'Could you please leave?'"

He repeated the phrase, and I scooped up Katie and left.  Because, after all, once I'd got past the way he was asking to what he was asking, it was a perfectly reasonable request; heaven knows I've needed a few minutes (or hours) on my own for down time in the past.  He simply hadn't known how to ask for it without having a meltdown.  By understanding where he was coming from, I'd been able to help him with the skill he needed.  (And, after that and other similar occasions, he's since then been able to echo the phrase back when it's needed at least some of the time.)

Life with Jamie feels normal to us because it is what's normal to us.  It's just the way our parenting experience has been.  Maybe it would have felt different if we'd had Katie first and were always comparing Jamie to a memory of a neurotypical (the autistic word for 'non-autistic') child of the same age, but, as it is, we pretty much take his differences in our stride and figure out ways to work with them or work round them.  Parenting is about accepting, respecting, and working with your child's strengths and weaknesses.  Parenting Jamie, with his particular and less common strengths and weaknesses, is just the variation of that principle that we have in our lives.

People so often hear 'disability' or 'autism' as dark scary words warning of dire fates, but to me, those words have always been positive.  They're words that open up new worlds of interest to be explored, worlds that hold some of the keys to understanding my son and to understanding more about people anyway.  And they're words of comfort and reassurance; the words that told me - and still tell me, in times of doubt - that Jamie's differences and difficulties aren't due to any failing on my part as his mother, that they're not evidence of anything I should be doing differently or more of or less of.  They're words that have freed me to understand him as he really is.

Being Jamie's mother is often difficult, usually interesting (apart from the whole listening-to-monologues-about-computer-games bit, which is mind-numbingly boring), often challenging, frequently fun, and nearly always exciting and intriguing.  And writing all of that kind of feels like a 'Duh', because, well, isn't that what being anyone's mother is like?  Obviously, if the genetic shuffle had dealt me a neurotypical child for my first as well as my second then my overall parenting experience would have been rather fundamentally different, but I'm glad that wasn't how things ended up; I like having one child of each variety, one with whom I can have a fairly normal parenting experience and one who's stretched my experience and my ways of seeing the world into new and interesting shapes.  Our story isn't a story of tragic struggle or heroically overcoming the odds or finding new meaning in life - none of the traditional themes for Disability Stories.  It's just about my two children - one disabled, one not - and about how grateful I am to have such a funny, interesting, challenging, lovable, wonderful little boy and girl in my life.

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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.

Comments

[Dionna @ Code Name: Mama]

"and one who's stretched my experience and my ways of seeing the world into new and interesting shapes." I love this! I also appreciated the point you make about the fact that your older child's temperament/behavior/etc. is your normal. That fact is something that would be nice to keep in mind for every parenting interaction, it could really help people be mindful of their responses and expectations. Thank you for writing!

[Gretchen]

Thank you for sharing your story! It's inspiring to see a mama who is so focused on the good :)

[Rachel @ Lautaret Bohemiet]

Loved this post! You have a lot of wonderful insight, mama.

[Hannah]

Great post on looking at the reasoning behind the request rather than getting frustrated at the request. It sounds like your family has found a great way to grow together.

[Granny C]

A beautiful and moving post. xxGranny C

[Lauren @ Hobo Mama]

So helpful and insightful, thank you. I really appreciate the way you move beyond the button-pushers in your son's behavior and way of talking and get at the root of what support he needs from you.

You know, it's funny, but I also read the communication book you mention far too early to be of good to me. ;) I need to reread it now!

[Lissa]

I’m not one to make comments on articles very often, but this information really spoke to me. It’s interesting and invaluable content presented in a very unique way. Thank you.

[Amy]

So insightful! I am incredibly impressed that you were able to switch from a perspective of anger and disappointment ("how dare he make up rules about our space!?") to a perspective of true empathy and compassion. Sometimes our children just need us to help them name the problem they are having/ I frequently forget that my daughter Abbey (3 1/2) can't verbalize her frustration as well as I want her to. I am trying to work on that! Maybe I'll check out the Explosive Children book you mentioned. Thanks for posting!

[Erica @ ChildOrganics]

Thank you for sharing your experiences. I could really pick up on your patience and strength as a mother. You are a very positive example. I really enjoyed you sharing your experience with turning the situation with the living room rules into a positive example of understanding our children.

[Christine @ African Babies Don't Cry]

What a great post, Im so glad I read it. You are right in saying that Autism and other disabilities are often dark, scary words to some, I am one of those. I don’t know anybody with Autism, and the media paints a scary picture sometimes. Its refreshing to hear how you enjoy parenting a child with Autism, and the ways in which you overcome the challenges. Thanks for sharing!