Grief and Unmet expectations

As a parent newly learning their child isn't a stereotypical normal child, you will have to endure a grief cycle like you have never known before.   There is no manual on how to raise a child and far less of a manual on how to parent a special needs child.  The cycle of grief is an enigma; no one can tell you how long it will last nor can anyone tell you it is a one time cycle.  

The first step in your grieving process will be denial.  "My daughter couldn't possibly be anything but perfect" or " He will grow out of it" are commonly the types of thoughts we might have.  Those thoughts will be replaced with grief and pain.  This step is very devastating; however, you have to choose to deal with these feelings.  If you don't face grief head on, you and your child will suffer more when you choose to face your grief.  Avoiding grief can cause physical symptoms that can cause your physical health to deteriorate and make your tasks to parent your baby more difficult.

Sometimes we attempt to put limits on our grieving process.  Just as it is impossible to know how we will handle and process the news of our child's health, but allowing pressure from outsiders to dictate that we should be over it will only exacerbate our ability to grief.   This is the time where many find a way to escape: buried in our work, choosing alcohol or drugs to numb our reality or keeping it all internal.  In the end, none of these mechanisms help the situation.

Time is your friend.  Give yourself time... and take it!  We are great at putting on our brave faces.  It's ok to cry!  There is no shame in needing to get the emotions out.  You can talk with other parents of special needs children for support.  While this might seem difficult, they can provide you hope.  They survived similar grief cycles and they are still breathing.  Keep a journal of your thoughts or join a support group.  In these darkest hours, only those who have walked similar paths can truly appreciate the trials you face ahead.

This next step for me was the hardest.  This is when guilt will pop up.  It is ugly.  It is unwanted.  Parents will start to ask themselves questions to try and explain the guilt we feel.

This often starts out with asking ourselves "what" and "what if" questions such as "What did I do to cause my child to be disabled?" or "What if I hadn't had that glass of wine before I knew I was pregnant?  Would my baby be ok?"  This is quickly followed by the "if only" statements and questions such as "If only we waited a little longer before having a baby."

Guilt is always looking for someone or something to blame.  While some of these questions might help to work out your grief, they mostly are looking for places to blame.  When we deal with unmet expectations, it is our nature to try and place blame somewhere, even if it's to blame ourselves.  In the case of a special needs child, sometimes there is no place to blame, but mostly it is not there.  Things happen.  Guilt serves no real purpose.  Acceptance of the situation will help take the guilt and blame to the past where it belongs.

Pursue thoughts and actions that will serve the positive purpose of reaching the end of guilt process in a healthy manner.

This Particular Life

I’m not sure what undid me.

Was it Charlie screaming and sobbing in the driveway about toy guns while I finally picked him up and plunked him thrashing in the car?

Was it visiting the same two pharmacies four times in two days to fill the one stupid new prescription for Charlie that no one seemed to be able to figure out?

Was it watching the psychiatrist furrow her brow in sympathy as I described Charlie’s willfulness, disinhibition, and general tendency to fall apart when things don’t go as planned?

It might have been holding my non-verbal and very scared ten-year-old down for two separate sets of X-rays on the arm that had a visible break.

It very well could’ve been restraining a screaming red-faced Jack as the orthopedist reset his angulated bone.

Maybe it was when Jack lunged at me and tried to bite me as we drove home from the doctor’s office when I wouldn’t help him take the splint and cast off his arm.

Or when he poured a can of a Coke Zero on my bag in the car.

I’m not really sure.

But sometime during the tense drive from the orthopedic clinic to our house, with my left hand gripping the wheel and my right hand pushing Jack away as he lunged at me in anger about the cast-covered splint stuck on his arm, I vividly remembered a line from The Fault in Our Stars.

In the movie version, Hazel sits on her back lawn talking to Augustus on the phone. She says, “I do not want this particular life.” She doesn’t want a different life so much as she wants the same relationships with Augustus and her parents, as well lungs that work. She wants a life free of cancer.

The thing about this particular life of mine is that it’s ruled by autism and cognitive delay and anxiety. And today I wanted it all to go to hell.

Then I remembered what my friend Kristi said at support group. She said when her little girl with Vici syndrome was tiny, she mourned all the things her baby couldn’t do and couldn’t be. She mourned that her family would never be normal.

She lost friends who couldn’t handle the complexity of her life and her daughter’s limitations. She cared for Lila constantly, even sleeping with her so she could hear the seizures and prevent aspiration. She lugged the suction machine everywhere they went. She lost herself in mothering her immobile little girl, and found something precious. Something better.

Kristi’s little tulip girl passed away this spring. Now her family is “normal” and she wishes they weren’t. She wants her blond, blue-eyed four-year-old daughter back, filling their home with light and her tangible spirit.

She wept over her plate of enchiladas when she told us, “My family isn’t special anymore.”

We fervently disagreed. We assured her that she will always be Lila’s mother, and that she is irrevocably, dearly special. That she has been since before she herself was even born. Lila’s gift to her mother was refinement.

My burden is different. The effacing, consuming, overwhelming parts are maybe not so different.

It’s not that I don’t want this particular life.

I mostly want the ability to handle it.

~~ Megan Goates, guest blogger

To follow Megan, please visit her blog at tooursurvival.com 

A father's perspective

Some say there's nothing more difficult in life than unmet expectations.  My wife and I had our expectations not only unmet, but turned upside-down and turned inside-out towards the end of May in 2007.  On that day my wife received a diagnosis of High Functioning Autism for our 7 year-old son, Tommy.  Incredibly, the results of a genetic test for our then 2 year-old daughter, Isabelle, had come earlier that same day;  Rett Syndrome.  We'd been watching her anticipated milestones fall further and further behind for some time before that day, so we knew something was wrong; we just didn't know what or for how long it would last.

            Every couple hopes for beautiful, perfectly healthy babies.  While my wife and I agree that our children are beautiful, we are also, unfortunately, not able to experience perfectly healthy in any way, shape or form.  Tommy is now 14 and sometimes rages out of control when confronted about relatively minor things, like stealing food from the pantry, or not getting as much time on the computer as he wanted.  This past year he has shattered the glass pane in our screen door, created holes in the dry wall in several spots in his room, broken 3 or 4 pairs of glasses, lost backpacks, wallets and MP3 players, wrestled with police, run away from home several times, refused to take his meds as a negotiation tactic and sprayed the contents of douche bags all over our kitchen floor and appliances.  It's okay if some of this makes you laugh.  sometimes I feel like I must laugh ... or otherwise I'll cry.

            Isabelle has had several surgeries, including a G-tube (at 30 months old) due to "failure to thrive" and this year, steel rods inserted along her spine to correct severe scoliosis (a combined total of 106 degrees out of vertical).  She requires 24 hour care and countless doctor visits with specialists.  Every morning she must be disconnected from her feeding tube.  Each night she must be connected to her overnight feed.  The fun nights are when she manages to disconnect her feeding tube (where the extension connects with the shorter tube).  We jokingly call this "feeding the bed".  We joke because we must.  Because the alternative is to ... well, you know what the alternative is.

            It amazes me what you can "get used to" when it comes to your special needs children.  It is not a normal life.  We can't remember the last time we had a "date night" (our unique situation makes this a major undertaking...gum-chewing 14 year olds with acne and black fingernail polish on their fingers just don't fit the bill with kids like this).  We are constantly reminded that we have children that are not well.  Children that are not quite ... normal.  They may never go on a date or marry someone.  It makes my heart ache to contemplate this - to contemplate that the word "never" can apply to my children for whom I wanted the whole world when they took their first breath, cried their first cry, and opened those sweet little eyes to check-out their new world mere hours after their arrival.

            It's not all pain.  There is also a lot of joy, too.  Their smiles are sometimes hard-won, but all the more precious for the effort taken.  Our son has a brilliant and very creative mind.  He memorizes origami creations.  He devours all available trivia regarding his favorite PC game (Minecraft).  Isabelle possesses a belly-laugh that can make the worst day at work just melt-away instantly.  Tommy has a great sense of humor.  He loves to sing (thanks to his Mom).  He introduced me to Adventure Time and the ridiculously random "ASDF" on youtube.com.  They are constantly surprising me.  To them - life is normal.  They have never known any other existence, and they are able to be content and even thrive - not realizing they ways in which they have been robbed of the things that we often take for granted.  I am humbled by their courage.  I often wonder if I could endure what they endure.

            Other parents of special needs children will recognize much of what I have talked about.  They know both the hardship and the wonderful love that comes from having these angels in our homes.  

They are not here to be taught, but to teach.  

I am grateful for the lessons.

On Parenting an Older “Utah Kids”

Twenty-six years ago I gave birth to a beautiful blue-eyed, red head little boy.  That first year was a doozy!     Ben was diagnosed with Opitz C Syndrome, deaf-blind, and medically fragile at the age of 14 months.  Like many of you we have spent many nights in the hospital and many hours in the OR waiting room. 

In looking back on all the adventures we have experienced with my Ben I am grateful for the things I have learned.  I hated, yes hated every transition to a new school, new teacher, new doctor.   I had to explain Ben all over again.    I would go through the grief process of accepting he wasn’t like all the other boys his age every new school and I dreaded it.  I felt guilty because my other children had to mature faster than their peers.   I had to be able to rely on them in an emergency.   I had to know where they were all the times in case we had to run to the ER.  They spent many hours in the car traveling to therapy and at doctor appointments, they cheerfully used sibling rivalry to get their little brother to do things and reach his goals.

When Ben was little I thought things would calm down the older he got, less illness, less parts of his body to fix, less stress.    I was wrong.  The things I worried and stressed over just changed as he got older.  If he had a good health year we would have issues with the teacher/classroom.  If he had a great teacher, we had issues with his health.  I used to call it the Ben game, and he changed the rules of the game every day. 

We include Ben in everything we do.  He was the unofficial mascot to many sports teams.  He went to most activities his 3 siblings participated in; Band, soccer, football, swimming.  He has gained great friends, and taught many lessons of love.  At this point all his siblings have grown and moved out.   He has nieces and nephews now, (okay so he really isn’t very fond of them, they take all the attention away from him.) but he likes attending their soccer games and playing video games with them.  At this point, we are a family of cyclists.  Ben and I are the official support crew and we follow them on their longer rides.   Ben loves blasting the music in the car for the guys to ride to, and he is still making friends and teaching love lessons to those around him.   

I still consider Ben a kid.  I always will.  We still have hairy days, Poopy days, Non-poopy scary days.  Days I know he is sick but no one believes me.   Scary, he is in shock and I don’t know why days.  And on the flip side we have funny tease the Mom days,  Play the music really loud,(because he is legally deaf) days.   Let’s just sit outside and watch the world go by days.   

Our lives changed forever when Ben was born.  He has taught me lessons I would never have learned any other way.  As he gets older he continues to teach me new lessons.  I may not have to worry about school clothes, IEP’s, and other school age things, but I get a whole list of different things to worry about.  I guess that is part of the life of a family with a child with a disability.  We learn and grow, then we learn something else, and then something else again.  Ben and I keep getting older.  We keep learning new and different things.  He keeps me thinking, working, loving, scheming.  He makes me appreciate what he is and what I have.  He keeps me living.

~~ Karen Cox, Utah Kids