Tuesday, September 30, 2014

Meet our October Kid of the Month



Meet Whitney, a happy 7 year old with bright blue eyes and red hair.  Whitney has a smile that will light up a room.  She uses it as her main form of communication.  Whitney is in first grade and LOVES school.  She is very social and prefers to be around other kids.  She has two older brothers who take good care of her and love her deeply.

Whitney has been diagnosed with Cerebral Palsy.  She suffered an anoxic brain injury at birth due to complications from her mother having an Amniotic Fluid Embolism.  Both Whitney and her mother were lucky to survive!  Whitney has spastic quad CP.  She has a baclofen pump for spasticity, is 100% G-Tube fed,  wheelchair bound, uses a stander, DAFO's, and scoliosis brace.

Whitney loves to watch Mickey Mouse Clubhouse, Doc McStuffins, and Sofia the First.  She also loves Tinkerbell movies.  She loves to watch the leaves blowing in the breeze and having other kids play with and around her.  She is a very brave girl and rarely complains.  She loves to snuggle and be held.  She spreads joy wherever she goes.  


Sunday, September 28, 2014

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



Monday, September 8, 2014

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.
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.”