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

Meet BreeAnn - Our Kid of the Month August

Breeann, or as she is frequently referred to in our home Bree Freaking Awesome Gorgeous Girlie Ann. Just so you know the reason she earned the title Freaking Awesome is that even though she is gutless (has less then 10% of her intestines), Bree loves to run and play she frequently carries her own weight on her back (she has a IV line and a g-tube. she carries those machines in her backpack) and use it as an advantage. BFA loves to wrestle with her brother, who amazingly is about a year older and weighs less. Now as many of you know weight in wrestling is a big deal. After the boy starts to engage Bree Freaking Awesome will lean in grab her brother and smother him to to ground. They both laugh and play and love the park. The girls favorite thing to do is go down the slide. As she goes down her face is in a state of pure terror and quickly changes to giggles as she lands safe at the bottom. We love our Bree Freaking Awesome and people think we are more awesome just because she is close by.

Gorgeous Girlie is not just how she looks on the outside it describes her through and through. Our little Ann loves to pick her cloths and to have her hair so pretty. After getting ready for the day this little girl will give her Mom a hug and kiss and say “Thank You Mom”. Just to melt Mom’s  heart. When anyone comes home our Gorgeous Girlie Ann will start to laugh contagiously and yell for you until she gets her required cuddles. If our GGA is ignored for too long she reaches up and asks “Up Please”. Our Girlie is Gorgeous thru and through. If you ever run into our Bree Freaking Awesome Gorgeous Girlie Ann she will be more than excited to see you and yell “HIIIIIIIII”.

Please feel free to contact us with any comments or questions. We are foster to adopt parents (both of our kiddos came to us this way), we are infertility survivors, and just love making new friends. Feel free to check out our blog too

jndpayne.blogspot.com

jndpayne@gmail.com

Canine Companions

The reality of the future was starting to sink in.  Nathan is a beautiful boy who is one of 5 children in our family and has the diagnosis of Autism.   Nathan has such a tight bond with his siblings that we have worried what he would do and how he would feel as everyone grew up and moved on.  Upon attending a conference at Nathan’s school, the Carmen B. Pingree Center for Children with Autism, our journey began.  The organization Canine Companions was in attendance at the conference with two of their amazing dogs.  Knowing that Nathan loved dogs, I went and got him out of class and brought him to see the dogs.  The moment Nathan saw the dogs he dropped to the ground and started snuggling and playing with the dogs.  He was in total heaven.  This could be a possible answer for Nathan.  A dog is not going to grow up and move on with life.  A companion dog would do exactly that, be Nathan’s companion and buddy for its whole life.  Not only that, this was a skilled dog that by law was allowed anywhere Nathan went.  The dog was protected by the Americans with Disability Act (ADA) and could go into any public place with no questions asked.  This dog could go to the doctor with Nathan, stay with him if he needs to stay in the hospital, go to the grocery store, travel on the airplane (without needing to buy an additional plane ticket and sitting by Nathan’s feet), go into any theme park, stay in a hotel room, movie theater, restaurant, etc.  So, I took their information and immediately contacted them to start the process of getting Nathan a Canine Companion.

After filling out all the necessary paperwork and going through the interview process, we got the call.  Nathan had been matched with 2 possible dogs and they wanted us to go to their training facility to be matched and get trained.  Canine Companion is a non-profit organization founded in 1975 that breeds, raises, and trains Golden Retriever, Labs and Golden Retriever Lab mixed dogs.  Through donations and volunteers, families who apply and are accepted receive the dog at No cost to themselves.

Nathan and I packed our bags and we were off to training in Oceanside, California.  Canine Companions invites and allows you to stay at their facility free of charge.  You stay in a private room where you share a kitchen with the others participating in the training.  Upon entering our room we found the largest gift bag that I have ever seen.  The attention to detail was unbelievable.  The teachers in each class were very personable and understanding of those with disabilities attending the class.  There was plenty of time to ask any and all questions or receive additional help when needed. Amazing volunteers came each and every day and donated their time to make us lunch.  These were not ordinary lunches; they could and often did feed us again at dinner time. 

We worked with different dogs each day until the day of matching.  Upon being matched it became very obvious that this organization looked into every detail.  The temperament and strengths of the dog was taken into consideration and how that matched the needs of the child or individual.  These guys knew and definitely know what they are doing.

Upon returning home we have found Nathans canine companion to be such a blessing to his and all of our lives.  The dog meets all the needs that Nathan has.  When taking Nathan and the dog out into public I have found that we get more stares but not always in a bad way.  Nathan looks so “normal” that the dog and his vest helps other to see that there is a reason that he is acting the way he does. 

I would strongly encourage anyone who has ever thought about getting a canine companion for their child or individual with a disability, to do it.   You will not regret your decision and it will benefit the person more then words could ever express.

Canine Companion has changed our lives in so many ways I would not even begin to express or put into words.  They truly are the best and unbelievable!!   Canine Companion ~ 1-800-572-BARK(2275), info@cci.org or www.cci.org

Jessica Kerr ~ Nathans mom

Lessons learned in Epilepsy

I am so honored to be included in the listing of guest bloggers for the Utah Kids Foundation. I was asked to write about my experience with epilepsy and seizures. While this is something I have written and spoken about many times it is still a very personal topic so you will have to forgive me having to go back and give some background information about my family in order to show where we are now in the mix of seizures and the things that I have learned.

                My husband Erik had his first seizure after a fever at 3 years old. In his early teen years he started having seizures frequently. For many years he had seizures a lot. By the time he met me he was only having one seizure a year on average. So when he told me that he had epilepsy it didn’t seem like that big of a deal to me. Although I did have to go look up what the word epilepsy meant in the dictionary (yes we use to have to do that before google). We had been married six months before I saw him have a seizure. What he didn’t tell me is that he could have more than one in a day. So he had two seizures then a third. I called his dad and told him I didn’t sign up for three in one day and he could have him back. This is really the beginning of our seizure journey.

                Kimmie was born in May 1998. She was a beautiful healthy baby. From the beginning Kimmie had a mind of her own. Two and a half short weeks later Kimmie had her first seizure. Six months later she started having seizures regularly. Her seizures started with tonic clonic (grand mal) seizures and they lasted an abnormally amount of time (5 minutes to 90 minutes). Between hospital trips we spent a lot of our time relearning basic developmental skills. At five years old Kimmie had what some call a catastrophic seizure. She ended up seizing for 6 hours straight. We are very blessed that Kimmie came back to us and that despite all of her setbacks we have our beautiful girl.  She is now 16 years old and has had hundreds of thousands of seizures. She is currently having quite a few seizures a day (mainly myoclonic, complex partial and absence seizures). We have gone out of state three times looking for answers and are currently bring in medications from other countries in trying to help. With the help of some amazing mom’s Kimmie will hopefully begin her CBD treatment in the late fall or winter this year.

                A little over 3 ½ years ago Erik went from having one seizure a year to a seizure in the bathroom that changed our lives. Erik started struggling for over 9 months to return to “normal” life. It took 2 ½ years from that life changing seizure to get Erik a VNS (Vagus Nerve Stimulator). It is a device that is placed under the skin and attaches to the Vagus Nerve and sends impulses to the brain. This has been a heaven sent treatment for Erik. He went from having seizures almost daily to one seizure in the last seven months (knock on wood).

                So with all of this being said what things have I learned:

11.    Do not take even one day for granted. It can all be over so quickly.

22.       Enjoy the good days. The dishes will still be there and laundry never ends but the opportunity to fly a kite may only come once.

33.      Find people to talk to who understand what you are going through. They can be some of your best resources and biggest strength.

44.    Trust what you think is best for your loved ones. Doctors are just practicing medicine. They do not know everything. They are educated and a lot of times have the best ideas and help. Although you are the one who knows your loved one the most. If you don’t feel right about a treatment look for other options or other doctors.

55.       Find who you can rely on for back up and moral support. You will need a friend to cry on their shoulder, or babysit your other kids, or just someone who knows when you need an ice cream.

66.       Despite what doctors say you will never “get use to” seeing your child have a seizure.  You do learn to cope after time and know what to do a little bit better. It doesn’t ever fix it or make things go away you just cope a little easier after time.

77.       Despite my best efforts I can’t do it all. Some things have to wait or cannot happen at all.

88.       Give yourself a break. I know as a mother I feel like I need to be everywhere and do everything when I can’t I feel guilty. So try and remember that you are important so are your children. Do what is the best for your family.

99.       Put the tape measure down. Don’t compare your special needs child with anyone else’s child. While you may wish more than anything that they were doing certain things you and your child will always be on the short end of that tape measure if you keep measuring.

110.   People will say stupid things. Sometimes it is in hope that it will make you feel better (or them feel better). I swore at times when people said, “God only gives special children to special mothers,“ or “I couldn't handle what you do, you handle so much,” then I was going to punch someone.

111.   I learned that I can overcome insurmountable odds and I can fight for what is right even when I am standing alone.

112.   Last but not least how truly meaningful a kiss and hug, or an I love you can really be.

I hope that something I have said have helped someone and that our journey will continue to grow and learn.