Guest Post: Life with the Spectrum

Guest Blog: Surviving Moves...with children!
Guest Post: The Born Early Project

To continue in the spirit of showcasing Epic Mommies, I would like to share this guest blog post from one of my fellow bloggers, Julie, pictured above with her beautiful family.  Julie writes the blog, Life with the Spectrum, sharing everyday life with her sons, Joe (18) and Alan (14), who are both autistic. Joe is verbal and high functioning. Alan is barely verbal, climbs everything, and has the world’s most infectious giggle.
Julie is definitely an Epic Mommy in my eyes…read her guest blog post and see why! 

Many people have said to me over the years “Oh you must be a special mom to have been given these special children.”  I am sure they mean it as a compliment, but it still irritates me.  I tend to interpret this comment as “You must have done something to deserve these kids.”  Well thatdoesn’t sound nearly so complimentary, does it?

I think people say this to comfort themselves.  They think “I’m nothing special so I won’t have a child with special needs.”  They repeat to themselves the oft uttered cliché “God never gives you more than you can handle.”  If God never gave you more than you could handle, why does suicide and child abuse exist?  I believe the statement is supposed to be “God never gives you more than you can handle with his help.”  But there are still people who are deeply religious who can’t seem to cope with their lot in life.

I think a better expression is “You never know your capabilities until they are tested.”  I have a friend who was incredibly squeamish – she actually threw up when changing Joe’s diaper as a baby.  Years later her daughter was in a very bad automobile accident and the little girl needed a colostomy bag.  The mom had to change the bandages for several weeks which she did without flinching.  Because she HAD to.  There was no one else to do this.
The same is true of parents of special needs kiddos.  Most of us didn’t volunteer for this.  When we decided to have children, we thought we would be going to soccer games, ballet practice and piano lessons.  We didn’t think we would be going to doctors, therapists and and other specialists.  But once that little baby is born, he is yours.  You still love him – even when he frustrates you.  And who else is going to deal with the public meltdowns, the poop smearing all over the bedroom, the elopements, the doctors, the boundless energy, the therapies, the non-verbal communication, and (worst of all) the endless advice?  The parents.  Are they changed because of their children?  Undoubtably.  They would also be have been changed by typical children but perhaps in different ways.
I know before I had two sons with autism, I didn’t think inclusion was such a great thing.  Neither my husband nor I ever had problems in school.  It never occurred to either of us that we would have not one, but two children with learning difficulties.  When it came to inclusion, I only considered how a disruptive child in a classroom might keep other children from learning.  I never thought about how dealing with a child who communicated differently could be educational to a typical child.  I never considered how exposure to children differently abled could teach empathy and acceptance.

For me, my older son (Joe, 18, high functioning autism) helped me become a better mom.  Dealing with his struggles to talk and massive childhood meltdowns and trying to mainstream him as much as was feasible taught me compassion, perseverance and patience.  It also pulled me down enough that I had the courage to ask a doctor for anti-depressants.  It introduced me to amazing people with whom I am still friends.  I became more tolerant and accepting of people who are different.  It even helped my marriage as it forced my husband and I to become a team. 
On the other hand Alan (14) was sort of the straw that broke the proverbial camel’s back.  Joe had just been diagnosed when we got pregnant with Alan.  Of course in those days, they were still tossing around numbers like 1 in 5000 and there was no known (or at least reported) genetic link so we actually thought that Alan would be our typical child.  For those that don’t regularly follow my blog, Alan is almost non-verbal and frequently violent.  We struck out there!

I often feel like Alan’s more severe disability exhausted me.  I don’t feel like I’ve fought as hard for him or worked as hard with him as I did with Joe.  I think he is worse off than he would be if he had been our first or even the only child in the family with a disability. 
I also am more resentful.  I feel like we were short changed in the kid department.  I watch my friends sending their children off to college and complaining of empty nests and I’m jealous.  My children are always home … and they probably always will be.  I am still paying for a babysitter – and a special needs babysitter at that! – with two teenagers.  Joe can stay by himself for short periods of time, but he cannot care for Alan.
If I read through my Facebook feed it seems like everyone’s children are gifted.  I know they aren’t really, but most people brag about the good things their children do and gloss over the “issues” that cause problems.  I am constantly dealing with the green-eyed monster when friends brag about scholarships and awards.  I am happy for them, but I am also sad for myself.
Special needs parents are special, too, but we are special because of our children.  Unfortunately we were not anything special before they came along and it can happen to anyone!
About Natasha

Hi, I'm Natasha! I'm a 30-something Program Manager and blogger at Epic Mommy Adventures. Most importantly, I'm a single mom to my adorable son, who drives me nuts in one moment and melts my heart in the next. I enjoy sharing our epic stories, giving advice to other single moms, and sharing my co-parenting woes. I also share blog hops, giveaways, product reviews, and so much more. Join the fun!

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