Thursday, March 30, 2017

My AM Routine

Hello everyone! This is BJ and for my first post I want to talk about something that I do that helps create order for my day. I call it my AM routine.  This routine gets me ready for the day. By completing it I gain the following:

  1. A Feeling of Success - I've accomplished something first thing
  2. A Positive Mindset - I look forward to the day instead of dreading it
  3. Energy, Energy, Energy - I have energy that I can share with my family and help them to get into a positive mindset
So why do I need an AM routine? Well in our family we have some unique opportunities throughout the day. Some of those consist of:
  • Navigating a child in meltdown mode
  • Getting a child to take medicine
  • Helping a child get dressed
  • Dr. Appointments
  • Therapy Appointments
  • Habitation and Respite worker scheduling
  • ...
As you can see there are lots of things to do in a day and chaos is waiting around every corner. It's important that I have the right mindset and energy at the beginning of the day. That mindset and energy can then be projected to my children and hopefully help them to be upbeat and positive.

My AM Routine consists of 5 elements:

Exercise -  This can be as simple as a walk around the block, or as intense as a 20 minute Tabata workout. The point is to get things moving; to stretch muscles that have been dormant for the past 6-8 hours. It also wakes up the mind, increases air flow to the body and in general wakes you up.

Scriptures - Usually I listen to them, sometimes I read them. It allows for a calmness to spread in my mind and body so that I don't start freaking out about what has to be done today. The scriptures also allow me to receive inspiration and answers when needed. I average between 2 and 3 chapters a day.

Vision Board - A vision board is a place where I put goals that I want to achieve. It is hanging on the wall in my bedroom so it's one of the first things I see when I get out of bed. I spend 3 minutes, between 20 and 30 seconds per goal, intensely looking at each goal. There are currently 6 goals on my board right now and they vary between health, learning, travel, needs, etc. As I look at the goal I picture in my mind what it will feel like to have achieved it. I also talk to myself about the benefits of achieving the goal and how it will help me in my life.

Declarations - I have a list of declarations. These are statements I tell myself that help me to be the person I want to become. I have statements on there such as "I have faith", "I seek wisdom in good books" and "I endure to the end". These declarations boost my energy and help me to have a positive mindset as I tackle the day

Prayer - I take time to check in with my Higher Power. I discuss with Him things that are coming up during the day. I thank Him for things that I have, blessings I have received, etc. I also ask for guidance and help on issues that will be part of the day so that I can do the right things.

Tracking - I also track my progress for the week. This allows me to see how I've done and also builds up feelings of success. This is especially important when the day has been long. I can look at my tracking and see that I accomplished my routine and feel better about getting things done that day.

I invite you to give an AM routine a try. If five things are overwhelming, you can start with 1 or 2 and build from there. Find things that will work for you and then track how your day goes when you start it off with the routine.

My AM routine is an important part of my day. It allows me to set a positive course for the day and helps me to be ready for whatever gets thrown my way. 


Sam is our middle child and our family clown and we adore him.  When I first arrived at the hospital to pick him up, a social worker brought me into another room to talk about certain issues.  She made sure I knew that the meconium had tested positive for Methamphetamines and we discussed various effects that might have on Sam.

Then she paused and said she needed to tell me about another problem Sam had.  She told me that Sam had facial palsy that prevented him from moving one side of his mouth and interfered with his closing and opening one eye.  Calmly and quietly she explained that when he cried, one eye would remain open while the other was squeezed shut.  She hesitated and I grew concerned about how this would effect him and what we would do about it. 

She continued, "When he cries, he is . . . he is just SO CUTE!"  Her positive response to something I had started to worry about, surprised me and as she laughed and described more about him I started to see things differently.

Her comments of: "He is just all our favorite"  "The nurses adore him"  "We call him our One-Eyed Jack" changed my attitude about Sam's palsy.  What she was able to do for me was "Reframe" my view and opinion about the palsy.  Instead of it being a negative, it turned into a unique character trait that made him irresistible.

The day we picked up Sam from the hospital and the AMAZING social worker in the background. She taught me a vital skill in dealing with the special needs of my children.

During our journey with multiple special needs and chronic illness, we have used this technique of reframing many times.  What at first seems insurmountable, can be overcome with a perspective change.

Sometimes when we focus too closely on a problem it becomes all we see, blocking anything else from our view.  But if we can image ourselves setting the problem down, and viewing it from another angle, new perspectives appear.

For example, if I were to hold a large rock in front of my eyes, it is hard to see around it.  It would be a stumbling block for me when trying to do anything else.  Yet if I can set that rock on the ground and view it from above, I begin to see it as just one part of my path and not an insurmountable part of my path.

Let me explain this another way again.   Our son Levi has autism and he has always been large for his age.  From a young age, he has had behaviors that are difficult to manage at times and his large size added to that difficulty.  To keep him from acting out on a sibling I would often step in between him and the sibling and gently restrain him.  This became more and more difficult the larger he became. During prayer one day, I was "discussing" (another word for venting) about this problem to God.  I was getting hurt, I couldn't carry him anymore away from the others and it was bothering me.  My complaint was that if Levi was going to be aggressive and violent, couldn't he at least be the smallest of the children?

A few weeks later I was talking with a friend about bullying at school and I realized that I didn't worry about people physically bullying Levi.  Because he was so large and tall, he wasn't the target of people who would physically confront him.  All of a sudden my perspective changed!  I realized that his size wasn't a hindrance at all.  I was grateful he was large enough to deter any bullies at school. Who would pick on a 6 foot 200 pound 7th grader?  No one!  That is one issue we have never had to deal with for Levi.  This perspective shift didn't change the fact that at home I still would have to restrain a 200 pound child at times, but it changed my attitude about it.  I became grateful for his size and was glad he was so large.

Sam has learned some control over his facial muscles, but he will always sleep with one eye slightly open and his smile will always be crooked.  But instead of seeing that as a problem, it makes Sam, SAM!  I can't imagine him without his "devil may care" crooked smile and mischievous look.  It has become his trademark.

Who can resist that smile when it asks for a cookie or has been teasing his sister?  (Okay, I really can but it is hard.)  

Reframing our attitudes about a diagnosis, behavior, or other problem isn't easy.  And I'm not suggesting we become a Pollyanna, totally oblivious to the facts or difficulties we are facing.  What I am suggesting is that we need a positive outlook in order to move forward.  Negative thoughts and emotions freeze us and we lose our energy, our problem solving abilities, and our hope.  Reframing and looking at the problem from a new perspective creates positive energy, helps us problem solve, and gives us hope.  And if our children are to see their "disabilities" as "abilities" we must model that for them.

Tuesday, March 28, 2017

Welcome to Our Wild but Wonderful Family

BJ and I are blessed to be the parents of 5 wonderful children.  We were able to adopt all 5 shortly after each was born.  Those stories I'll save for another day; adoption is wonderful and we are so grateful for it.  BJ is a computer architect and works for a large company.  I am blessed to be a stay at home mom with a full time job of running our family.  Having three children with special needs is busy and I usually have a few doctor appointments and meetings a week.

Levi is 16 years old, 6'4" and lives for soccer.  Levi is on the spectrum and high functioning.  As beginning parents we suspected something was a little different with Levi, but people often told us to ignore our instincts.  We didn't however, and kept seeking help for some behavior problems we were having and eventually we received his diagnosis at age 5.  Levi has struggled with aggressive behaviors and it has taken unique solutions and parenting to help him overcome this.  We are so proud of the progress he has made.

Ellie is 14, a dancer, a soccer player and is neurotypical.  She loves hanging out with friends and shopping.  She also is an amazing sister.  Ellie has great skills when thinking of creative solutions to help her siblings overcome obstacles.  Because Ellie is so responsible and a natural leader in the family, we have had to be careful about not taking advantage of her abilities.  Balancing the parenting of special needs children and the needs of typical children can be tricky and we haven't always done our best.  But it is something we are learning to balance.

Samuel is 13, and also plays soccer.  He loves boy scouts, camping, fishing and all things outdoors.  Sam was exposed to meth amphetamines during pregnancy and as a result has severe ADHD and learning challenges.  A few years ago Sam's behavior changed dramatically and he no longer wanted to go to soccer practice and began sleeping a lot more.  We after 2 years of searching for a solution, we discovered with the help of a fabulous immunologist, that Sam has Common Variable Immune Deficiancy (CVID).  His IGG and IGM levels will rise with immunization shots, but then will dip again.  It is as if his immune system "forgets" that he is immune and his body is constantly fighting infection.  Sam now has infusions twice a month with a drug called Hizentra to boost his immunity. 

Grace is 10, has an amazing imagination, and loves to move.  She can't/won't sit still and even stands while watching television.  Grace has Fetal Alcohol Syndrome and Cerebral Palsy.  Our neurologist told us that she had written in her notes after first examining Grace that she would most likely not talk, walk or interact with others.  She told us because Grace does all those things now and she called Grace a miracle baby.   Environment and therapy were crucial in Grace's development and progress.  

Lia is our last child and is 9 years old.  She is neurotypical and the life of the party.  Lia loves entertaining and will dance, tumble and sing for anyone.  Lia loves playing with friends and being busy. She also loves to read and gets all A's in school.  We are so grateful for our little caboose and all the fun she brings to our family.

Raising 5 children is a crazy, fun experience, and when you add Autism, Fetal Alcohol Syndrome, ADHD, learning disabilities, Cerebral Palsy, "behaviors" and long term illness to the mix it can become completely overwhelming.  

BJ and I have had to learn coping skills and strategies to help manage our lives so that we can be available to help our children.  Believe me, there were plenty of days I wanted to curl up in bed and do nothing.  And to be honest, some days I did.  There were days I got the children ready for school, sent them off, put the littles in front of the television and went back to sleep.  And right before they came home, I would get dressed and start dinner.  Those were tough days.

Depression, anxiety, divorce and feelings of inadequacy are so common when you parent a child with special needs.  But there are ways to overcome these feelings and the voices that nag us that we aren't enough, we aren't doing enough and we should just give up.  

If you are just starting your journey, or if you have been doing this for years, I hope we will have some things to share that will help us all in our quest to help our children be the best they can be.