Life With Michael – A Mother’s Experience of Life With Aspergers Disorder

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“I cried the day my son was diagnosed with Aspergers disorder.  Not because there was something wrong with him, I already knew there was.  I already knew he was different.  In fact I had searched for more than a year for someone qualified within the medical profession to officially label him with a diagnosis which I already had.  I cried because it was a life sentence, there would be no easy answers, no pill that would take it away, this was a label that would stick, permanently.”

For this month’s  Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama, my sister in law Nicky shares the story of learning to live with her nine year old son, Michael’s Aspergers Disorder.  Please welcome her as she opens up about her experience.


I cried the day my son was diagnosed with Aspergers disorder.  Not because there was something wrong with him, I already knew there was.  I already knew he was different.  In fact I had searched for more than a year for someone qualified within the medical profession to officially label him with a diagnosis which I already had.  I cried because it was a life sentence, there would be no easy answers, no pill that would take it away, this was a label that would stick, permanently.

That was six and half years ago and Michael is now 9 years old.  It’s been quite a journey; I have amassed endless pages of research.  One thing I now know for sure, is that no two special needs children are the same, while there are common issues, there is no “one fits all” therapy, treatment or cure.  Through this I came to the realization that in spite of the label, whether it be special needs, Asperger’s, PDD or all of the others I’m now intimately familiar with, the only label that would ever fit was the one I gave him at birth….  He is unique and I love him, issues and all.

This realization did not “cure” him nor did it make things easier, but it did make me realize that the answers would come by trying to understand him better and customize what is out there to fit Michael and not the other way round.  No doctor, therapist or teacher would ever be able to get to know him as well as me, instead of relying on them for answers I’d have to work with them and provide insights into Michael and what would and would not work.  I’d need to assist them as much as possible.  Any doctor who wasn’t willing to work with me as well as Michael was not going to work.

Below are just some of the successes we’ve had, it took time and I often despaired, but in the end they helped.  We still have loads of issues and it often feels like just when we put one problem behind us there are two new ones to take its place.

I was having major issues with him not being able to cope with even the slightest disruption in routine. AndI do mean slight.  On the way to crèche every day I needed to drive the exact same route, say the same things at the same point of the journey every day, and everything would be fine.  If I forgot something or for some reason had to take a different route he completely lost it and it was impossible to get him out of the car for at least half an hour.  Going to school was a regular daily occurrence and was predictable; things like doctors’ appointments, visits to friends or anything that wasn’t a regularly scheduled event were out of the question.

Life was hard, if I left the house no matter where I was going I had to turn left, turning right when I left the drive wasn’t an option.  This was difficult to overcome, but even to this day if we do anything out of the ordinary, I need to start preparing Michael ahead of time. The bigger the event the more preparation is needed.  I need to painstakingly explain over and over again what is going to happen and that it will be OK.

Sometimes I need to do this for a solid week, for smaller things the day before.  For big things like school concerts, it means visiting the venue beforehand and in detail explaining what will happen. The more uncomfortable he is, the more questions he asks about what’s going to happen. To be honest its really annoying and lots of extra effort, but over the years he’s gradually been able to accepted small changes to routine by himself and to although it makes him anxious there have been no more meltdowns in this regard.

The other big issue I was having around this time was communication, Michael was behind verbally and communicated at a level of a child that was more than a year younger, and in fact still does.  This unfortunately did not stop him from doing things like running away from me into the street, hurting his sister and me and generally misbehaving like any other child.

The problem was I couldn’t talk to him about this, smacking him wasn’t an option as he didn’t understand why I was doing it and it generally led to a meltdown, so there was no way I could get through to him.  I chatted to a few people and started understanding thatMichael, like a lot of other children on the autism spectrum, learns visually.  He loves watching TV and movies and can recite his favourite movies word for word.  I started taking advantage of this to communicate and teach him by making picture books which told the story of the little boy who got hurt by a car when he ran into the street or the naughty little boy who hurt his sister and made her sad.  Sometimes I used photos, sometimes pictures from the internet or magazines, sometimes a combination.  These were really basic books, but they worked.  It took a while but it was worth it in the end and I finally reached him.

I still use visual means to help teach him: computer games, educational programs and lots of books.  When he’s struggling with something at school visual aids are often the only things that work.

We have had many small victories and some collosal failures.  I am not by any stretch of the imagination the world’s best parent, I am also not a qualified doctor or therapist, I am just a mum.  But, if I had to give advice on what works for me it would be the following:

  • All of our children are different, what works for another parent won’t necessarily work for you.
  • You know your child best, trust your feelings and instincts, they are usually right.
  • Don’t be afraid to interview and look for professionals who are willing to work with you and listen to your opinions while providing professional advice.  Doctors are humans and not Gods, they can be wrong.
  • Remember that many people do not understand special needs children.  I have had strangers come up to me and tell me I’m a bad, lazy parent who won’t discipline my child.  You’re in an impossible situation and trying your best, even if you’re not succeeding you’re not a failure as a parent.
  • Don’t be afraid to seek alternative forms of education.  I was initially, and this is perhaps the biggest mistake I’ve ever made, my child will never fit into a “normal” school so I found a school to fit him and stopped making him miserable by trying to change him to fit his school.
  • Be patient, sometimes change comes in months and years and not in hours and days.
  • Let your child be a child, not everything needs to have an educational or theraputic purpose.



Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit 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 CarnivalHannabert’s Mom shares her family’s rules for family and friends of a NICU baby.
  • Muddy Boots: Speaking Up for Special FriendsMudpieMama 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 PlacesThat 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 MomMomma 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.


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21 thoughts on “Life With Michael – A Mother’s Experience of Life With Aspergers Disorder

  1. Pingback: Thoughts on Parenting Twins « Intrepid Murmurings
  2. Lauren @ Hobo Mama

    That must have been so hard for you to know your son has Aspergers, though I’m glad the diagnosis brought some relief that you could define what he was going through. The condition sounds so frustrating (for both him and you), and you sound so patient. I love how you make your own books to teach him things — that is such a brilliant idea. Thank you so much, Nicky, for telling us Michael’s story, and thanks, Luschka, for inviting your sister-in-law to share!
    Lauren @ Hobo Mama’s last blog post ..Wordless Wednesday: Vampire baby


  3. It’s so important to remember that even when things aren’t going according to plan, when you’re doing the best you can for your child you’re not a failure as a parent.

    Thank you for sharing this, Nicky!


  4. What an incredible advocate you are for your son! I am so thankful that I’ve been able to read and absorb the wisdom of all the mamas who wrote for this carnival. Thank you for sharing your story!


  5. Pingback: ABCs of Breastfeeding in the NICU | Breastfeeding Twins
  6. Great post! I especially loved the final tip (in bold). Amen. Let our children be children. Perhaps that is the greatest gift we can give them.


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