Taking Joy in the Little Things

Hello to our Utah Kids Family!  We love reading about and sharing in your triumphs and your hardships.  It’s nice to know we are not on this journey alone.  We have each other.

I would like to introduce our little family and tell you a bit about our 10 month old son, Jonathan or Jonny for short, and his diagnosis.  I am Molly and my husband Dave and I have been married 18 years.  We did not think we would be able to have children, but in April of 2013 we found out we had a little one on the way.  We were surprised and excited and all of those wonderful emotions that you have when you find out that you are going to be able to have the child you had given up on being able to have.  We also knew that there was a 1 in 4 chance that our baby would have Lowe Syndrome.  I had an amniocentesis done when I was 5 months along and we found out that our little boy had Lowe Syndrome.

Lowe Syndrome is a sex linked recessive genetic condition that women carry and males are affected by.  I am a carrier and I grew up with 3 brothers, 2 of whom had Lowe Syndrome.  Lowe Syndrome is a rare syndrome that affects the eyes, kidneys and brain.  Boys are born with cataracts, which is a cloudiness on the lens of their eyes, and often have Glaucoma, which is an increased pressure inside the eye.  Their kidneys do not function properly which makes it hard for them to put on weight and keep the nutrients that they need to grow and have their bodies function properly.  These boys also have varying degrees of mental and physical handicaps, anywhere from moderate to very severe. 

Jonny is our little miracle baby.  He inspires us daily with his accomplishments and his fun smile.  He spreads love and joy wherever he goes. 

He was born in November of 2013 and he spent his first ten days in the NICU because of breathing and eating issues.  In his first 6 months of life he had 5 surgeries and 8 other exams under anesthesia to take care of the glaucoma issues and cataracts on his eyes.  He is a trooper and did so well with all of these procedures.  He can see well with his glasses now.  We hope to have artificial lenses implanted in his eyes about the time he turns 3.

Jonny is delayed physically and has low muscle tone.  We are working on his head control and sitting up right now.  We hope that he will be able to sit up on his own by the time he is a year old.  He likes to roll around, kick and play with his musical mobile.   We have not noticed any significant mental delays at this time.  He loves to babble, play and listen to upbeat music.  He also enjoys finger play like pat-a-cake and itsy bitsy spider. 

He is a Mama’s boy and will call “Mom mom mom” if I get out of his sight or hearing.  He loves to play with Dad as well and he calls Dad “A” like the a in apple.  He is also starting to say “Hi” when someone says it to him. 

We work with several specialists with “Kids on the Move” which is the Early Intervention program in our area.  They help us with Jonny’s learning and growth. 

We treasure every step forward that Jonny makes.   Every smile is a treasure and he is our sunshine.  This journey that we started when Jonny was born has been hard at times but overall we have had a very positive experience.  We have had to adjust our perspective on what we expect but that has allowed us to enjoy our little boy even more.  We see the world through different eyes and we try not to take anything for granted.  The love and support we have received has been wonderful.  We couldn’t imagine life without our Jonny.

For more information on Lowe Syndrome you are welcome to visit the Lowe Syndrome Association website at http://www.lowesyndrome.org/.

~~ Molly Barrington

Ten things I would do differently if I could parent my son with Autism over again

10 Things I’d do differently if I could parent my son with Autism over again.

By Heidi Michelsen Whittaker.

1. I WOULD SLOW DOWN!! I would make my life as easy as possible by cutting out all the non-essentials and focus on the most important things instead. I wouldn't even try to keep up with the neighbors or other family members with “typical” children. I wouldn't make my son with Autism try and run the race at the normal pace, rather I’d do a better job at stepping back and letting him decide if he even wanted to put on his running shoes. I wouldn't feel guilty about not going somewhere or coming home early if my son was on sensory overload. I would accept a slower pace and not look with longing out the window at those who “seemingly” lead more exciting, more eventful lives. I’d make peace with the slower pace and find joy in it.

2. I WOULD TAKE CARE OF ME BETTER. I would first have allowed myself to grieve—to mourn the loss of a “typical” child without guilt (even if someone ELSE did NOT mourn the same way), and then I would take A LOT more breaks all along the way—hire babysitters and get away even if it was expensive. I would NOT allow guilt to ever creep in whenever I took care of me. I would have rewarded myself more often—even if it was just for little things I did right, instead of berating myself for all the things I did wrong. I’d recognize when I was feeling overwhelmed and I would STOP, allow myself a good cry, do something to take care of me, and then go forward again feeling renewed instead of continually exhausted.

3. I WOULD BECOME THE MASTER AT HANDLING BAD ADVICE OR HURTFUL COMMENTS. I would have dealt with disapproving family members or ward members or neighbors more with my “head” than my “heart.” I’d worry less about what everyone else said I was doing “wrong” as a parent. I’d reply to unwanted advice by saying, “I can tell you’re trying to help, and I appreciate that. We’re working on some different therapies that seem to be really helping, but your concern is appreciated.” Or, “I’m not sure if you’re trying to help when you say that, and maybe I don’t truly understand what you mean by that statement, but I’m going to give you the benefit of the doubt.” And then I’d forget about their comments as quickly as possible for MY health instead of holding on to the hurt and anguish. I would quit trying to get everyone around me to understand MY life and MY journey with Autism, rather, I’d spend more time trying to understand my son’s life and HIS journey with Autism.

4. I WOULD HAVE EMBRACED MEDICINES INSTEAD OF FEARING THEM. I fought a long and hard unnecessary fight against my children taking medicines because of MY own worries and fears. When I finally bit the bullet and gave my children medicines, suddenly my children THRIVED and had success in all areas of their lives. I would have looked at medicines like a parent who gives Insulin to her child with Diabetes. I would better understand that if my children NEEDED medicines for their greatest success, then depriving them of those because of MY fears was wrong.

5. I WOULD CELEBRATE THE SMALL STUFF DAILY. I would treat the small successes in my child’s progress as if they were big ones. I’d take my son out to ice cream more or hug more often when he reached a milestone, no matter how small. I’d praise more and get upset less.

6. I WOULD HAVE RELIED, TURNED TO AND TRUSTED GOD MORE. Instead of feeling “punished” or angry for a life plan that wasn't MY choice, I would have had more faith that there WAS a purpose to my difficult life. I would have trusted in God more and complained A LOT less. I would try to have more gratitude. I would remember that I go to Church to have a relationship with GOD, NOT to have a social life. I would remember that none of us is perfect, and that all of us are in different places of understanding. And lastly, I would make church events as easy as possible for my son. I’d worry less about who was watching our family circus.

7. I WOULD HAVE LAUGHED MORE. There’s a LOT of humor in Autism itself, and I would have laughed more rather than been embarrassed by behavior or cried about it. I would have laughed more at myself when I made mistakes, and laughed more with my son when HE did.

8. I WOULD HAVE LIVED MORE IN THE PRESENT. I would STOP worrying about the “what ifs” of the future and stay in the PRESENT. I would rejoice with what my son is able to do TODAY and not worry so much about tomorrow. I’d certainly keep hope for my son to have a bright future, but I’d worry about it less. I would make up my mind to be happy for other friends’ successes with their children. I would cry more happy tears for my friends and less sad tears for me. I’d remember that “Rome wasn’t built in a day, and neither will my son with Autism.” I’d take it one day at a time, one goal at a time, and not worry about accomplishing it all TODAY.

9. I WOULD HAVE FOCUSED ON BUILDING A CLOSER RELATIONSHIP FIRST RATHER THAN “FIXING” MY SON’S BEHAVIORS. If someone had told me sooner to establish relationships and connections FIRST, I would have done a much better job understanding what my son “needed,” rather than what I thought he needed. I would have thrown out everything I “thought” I knew about parenting, and instead learned how to “soft-parent,” right away, which is to react calmly and kindly, trying to figure out the “why” to behaviors rather than focus on the “what” he is doing or “how” he is behaving. I would have focused less on “discipline,” or fixing negative behaviors, and more on the lessons to be learned in a gentle and accepting way. And I wouldn't even pay attention to the onlookers who criticized me for "not disciplining" my child, rather I'd just smile and continue to parent as my SON needed, in that gentle and loving way.

10. I WOULD HAVE LOOKED FOR THE ROSES RATHER THAN THE THORNS. I would have tried to see the “good” in Autism instead of all the things that bothered me about it. I would have tried not to hate the disability; rather I would have tried to see the benefits. I would try to embrace what makes my son the special person he is rather than what the disability is making my son the person he is “not.”

And one last thought: “Being happy doesn't mean that everything is perfect. It means that you've decided to look beyond the imperfections.”

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