Life Orchestrated

Life amazes me sometimes.  This is so true, that when you think your at the lowest point and there is no getting out, things just seem to go up and fall into place.  My faith makes me believe that life is an orchestra that just plays continuously until God is finished with you. I am hoping that I'm not done being used yet...I have just started..:)  Over the last few weeks I have watched my life take turns that I never thought would happen.  People, places and things have all been set.  I do believe without my faith, diligence, and tenacity that things will not happen as they should. Over the last few weeks I have been given the opportunity to share Beckett's story.  Global Genes and CNN I-Reports have both published his story on the Internet.
http://ireport.cnn.com/docs/DOC-1144791

http://globalgenes.org/mom-spreads-awareness-about-rare-syngap-1-gene-disorder-after-sons-diagnosis/

We have submitted his story to the United States House of Representatives, Energy and Commerce Committee to help pass legislation that will help the rare disease and rare chromosomal disorder community.  I have been asked to share Beckett's story to be published in the official Tribute To Champions 2014 Gala program with Global Genes Project.  The most exciting part of these past few weeks, besides everything else has been the published; is the new SYNGAP research that was done by Dr. Gavin Rumbaugh and his team of scientists at Scripps Labs.

http://www.cell.com/neuron/abstract/S0896-6273(14)00401-2

Our group of SYNGAP parents are also anticipating a new study to be released mid-summer by Dr. Jacques Michaud and Dr. Michael Parker about SYNGAP and epilepsy.

An exciting summer and still more to come.  Our small group of parents are also in the beginning stages of forming a non-profit foundation that will support research, awareness and small medical grants for families and caregivers of SYNGAP patients.  So stay tuned for new and exciting stuff!

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Beckett has just taken off developmentally.  In the last three weeks or so his language has increased and he his trying to repeat every one's words, I mean every word.  That's includes when he heard the word "ass" and repeated it exactly as he heard it.  And this time, it wasn't me saying it.  I do have to admit it was pretty funny stuff.  We had to get serious really fast and tell him "No, no, no!"  So now he shakes his finger at you and says that instead.  He is also asking for help, going to the potty by himself, asking for snacks when he is hungry by pointing.  For words he doesn't know yet he is coming to me taking my hand and takes me to what he wants or needs.

I was amazed the other night as we were putting the twins to bed and he was all tucked in.  I was looking for his chewy tube and couldn't find it.  I was stunned to see that he got out of bed, turned on the light, came back to the bed and found his chewy tube in the sheets.  He then put the chewy tube in his mouth, went back to turn out the light and crawled in bed.  I sat there with my mouth open in awe and I had to pick my jaw up off the floor when I left the bedroom. It came to me that this boy is problem solving...LIKE FOR REAL!!! 
I don't know if the combination of the medications are helping or if it is just him "growing up" a bit.  I might think it is a little of both.  I have always wondered if the Omega-3's he has been on since he was two years old has helped his brain development. The seizures being controlled has helped his cognition, while the Zoloft has decreased his sensory anxiety along with a significant decrease in his OCD tendencies.  I am very happy with his progress and I am hoping it continues as he gets older. I can't help to think that maybe we have stumbled on to something with the Omega 3's, but maybe time will tell.  Maybe I should mark my words and hypothesize that maybe the Omega 3's are protecting the cells in his brain from damage that the seizures cause.  It's a shot in the dark..but that's usually where science starts, in an "educated guess".

One of our many visits at Texas Children's Hospital
He loves Mini Moo!

Faith of a Mustard Seed

We have taken some time to be able to process some if the news about Beckett.  Our family has decided to go out on faith and trust God for the strength and funds to help take care of our little boy. I have been frustrated with the system put in place to help children and adults with special needs.  I am disappointed in the lack of funding that our nation has for these very needy individuals.  It is sad to see working people who want the best for their children struggle for every dime to get the needed care for their family members.  It seems that the richest nation on Earth can't find the necessary money to help people with minimal care. We are not talking the best of care, but the absolute bare minimum.
The decade of waiting is outrageous. The delay in critical developmental time is caustic for the brain to be able to make the best progress.  Without this time the chance for growth is slowed or lost. The burden is put on the public school system and it is already strained to its capacity. The average person who is working are punished for working. The ones who are well and able to work and don't, get the most from our financially stressed system.
My husband and I have gone out on a limb to try and get our son the care he needs.  Having to put our pride aside and ask people we know and even people we don't to help us get care for Beckett has been a humbling experience. We have set up a donation website to help raise funds to provide for his needed therapies, which include Occupational and Speech Therapy (recommended two times a week but he goes once) and the recommended Physical Therapy that we haven't started yet because we can't afford all the co-pays.  He also needs a special computer that will help him communicate and his SMO braces for his feet every 6 months.  We know that God will provide his needs and Beckett will be used for Gods Glory no matter the turn out.  I won't hide the fact that it is very hard for us to keep the faith, but we try to take it day by day.  We stand on the promise God made that He can move mountains with the faith of a mustard seed. (Matthew 17:20)  Some days I think that is all I have, but He still brings me through.

http://www.giveforward.com/beckettsstorymyswan

The Waiting Game

Trying to get answers to why Beckett has problems has found me searching every nick and cranny for answers. It is going to take a long time. It is very hard to accept there could possibly be no answer to what happened and how to fix it.  I struggle with that reality on a daily basis.  As long as I am able and willing to find an answer, I will not stop until I do.  I am not really a "conspiracy theorist", but sometimes I do believe the people that are in the elitist part of our society tend to know more than they let on about health issues.  I do think that sometimes information is only revealed in circumstances that ones closest to the research have some kind of conscious and end up letting the "cat out of the bag" and "taking one for the team".  Almost like the cigarette industry came out with research saying that cigarettes caused lung cancer.  I am learning more and more everyday that our health system and the way things are run by our insurance companies are strictly politically driven.  It can be very frustrating at times to think that a persons life is put second to money and political gain.

Beckett's ECI graduation 4 days before he started PPCD at Ault Elementary

 I have vowed to fight to the end for my son and any other child who has had to encounter the system who doesn't care about their well being and to fight for a cure for mental disabilities, autism, and other neurological disabilities that keep a person from living a life that is normal.  It is exhausting to deal with a child that has disabilities and finding respite to have a somewhat normal existence.
However, the tiny gains that Beckett makes become huge celebrations.  He began his new PPCD class 2 days after his 3rd birthday.  I will never forget the day that he came home from his new PPCD class an could suck through a straw!! Sounds crazy, but Mrs. Julie got him to drink through a straw in almost 2 weeks of being in his new class.  I was actually worried that he wouldn't do much of anything in his new class since the school year ended in 3 1/2 weeks from when he started.  I was so wrong..Other concerns were about his bus ride to the school from the daycare and overall cooperation with the teachers.  He learned a routine in a fairly short time and began to make more sounds. His teacher sent us a video of his progress. He was making sounds he learned while in class the short time he was there before summer started.  I cried!  I do believe that God sent a pair of teachers to take care of him and help teach Beckett.  They have also helped us to deal with Beckett's disabilities.  I knew that the new school year would be a huge benefit for him and was excited about the new things he would learn in the Fall.

Family Impact

I guess no one ever really thinks that they will be blessed with a child with special needs. I do know that my son is a blessing to our family.  I feel like I am being refined for something, I just don't know for what yet.  I know that in time it will be unveiled and it will change my life for the better.  I do however, sometimes wonder why the "refining" has to be so hard. 

My family has had to learn and adapt to new routines and changing the way they do things for and around Beckett.  Him being a twin was hard because when we would do something for him, we also found ourselves doing the same for his twin, Pyper. I know she knows that he needs the extra help, but I still try an give her that little extra when I can. I feel guilty at times when I have to spend more one-on-one with Beckett and had to make Pyper wait.  Her need for attention is also very high. I guess every toddler craves every bit of attention from their parents.

Big Brother Sawyer Entertaining the Twins

We also ask a lot of our older children.  They help us out tremendously around the house.  Ok..in reality, they do sometimes have to be coerced to help.  On days we would come in from work we would have one of our teenage boys play with Pyper, while my husband or I would bring Beckett aside to work on sounds, making signs, or putting together puzzles.  At the same time, one of us would be cooking dinner for seven people. My other teenage boy would help me with chores and my oldest daughter helped when she could.  She was is at home going to college, working almost a full time job.  She would do house cleaning on days she was out of school or wasn't working early. 

Autopilot is common place in my life.  My five children keep me very busy. Four are usually in extracurricular activities. They have me running around to football games, practice, and therapy. It is all exhausting, but rewarding to see their successes.  I know that God has given me the strength to endure. Without my wonderful family I don't know how I would do it.  A friend of mine told me once that, "Children pick their mommies".. I know and believe that is to be true.  It sometimes is still day by day, but I know that there are going to be many blessings later and my hope still never fades for my special boy.

Our New Normal

Our New Normal

After a year of no "real" sleep and dealing with new situations that arise every day, life wasn't just day by day, it was minute by minute.  Often dealing with the frustration of a child who is unable to communicate is just pure hell.  The constant screaming shatters any semblance of calm.  Frequent breaks to step away for relief are necessary to maintain a sense of mental tranquility.

I kept asking why He allowed this to happen to my little boy.  I was angry at God.  It is a horrible cycle of frustration, anger, guilt, and depression.  Fortunately, I didn’t have the luxury of feeling bad for long because auto pilot would kick in and remind me that I had to determine to get through this and only God could help me do it.  I'm not just saying that because it sounds noble or because it is the "Christian" thing to say.  I truly believe it.  It's just the human side of me forgets sometimes…ok...maybe a lot of the time.  And then I come to my senses, and there He is just waiting for me to depend on His strength. 

I never knew how much patience is needed to raise a special needs child.  My mother used to say, "Don't pray for patience, pray for understanding."  So I did.  I was praying, asking God to help me understand what it was I needed to do to get through this.  Looking back on Beckett's first year was an eye opener…I had learned many small invaluable lessons of life.  The small things you do are really stepping stones to a livable and purposeful life.  To this day I struggle with my purpose.  I'm a proud mom of 5, a wife and a teacher, and still it seems that life throws things at you that you never expected.  In a flash, you can lose the focus of your responsibility to a child who utterly dependent on you.

My purpose changes daily.  To keep up with my child’s ever evolving needs, I am learning sign language, impersonating physical and occupational therapists, and as a result I am far more in tune with the everyday challenges of special needs people.  My compassion and empathy is foremost as I observe those who cannot do for themselves the most menial task.

I tend to come back to a statement that was told to me by a very wise seasoned educator I work for.  As I described some of my daily struggles, she said "Monica, God gives us a new normal on occasion, we must trust Him to get us through it and find ways to modify."  She was right, I keep changing and adjusting to my "New Normal."  Thinking like that helps me get through the hard times and knowing that it's only temporary helps because the next "New Normal" is just around the corner.  Beckett himself has a new normal every day.  Every milestone he makes is his new normal.  We are all on this road together but his path is bumpier than mine.

The second year of Beckett's life was full of uncertainty. He was now in therapy through ECI (Early Childhood Intervention) and making small motor skills improvements. He began using a walker that helps lower body muscles develop. His therapist, an ex-marine, with a demeanor and motivation techniques that do wonders.  He is a stubborn, bull headed little boy and a bit spoiled.   Sometimes I thought she was too tough, but I understand that higher standards are necessary for him to aim towards.  Just because he was slow, didn't mean he couldn't learn.  Repetitive commands and hand-over-hand demonstrate just what he can do on his own.   

With concerns about motor development came concerns about cognitive development.  He had an occupational therapist and a play therapist who worked with him weekly.  They taught him to hold a cup, turn pages of a book, and to use a crayon and other simple motor tasks. A normal toddler typically imitates behavior by watching someone with a toy.  Beckett was not interested in toys or even in watching cartoons on television.  Most of the time he wandered aimlessly around.  It seemed like he was in his own world, indifferent to the physical world he actually inhabited.   He was on a different level than typical children. At least that is what my "gut" was telling me. 

Before long we became concerned about his ability to learn.  Processing a simple task took him a long time.  Not just minutes, but sometimes days of repetition.  To serve as an echo chamber, I would repeat the same word a hundred times a day.  As a result, I think I dreamed about "more" and "juice" and "milk" for months after.  Frustrated and discouraged I often wanted to quit.  But God knew what He was doing because just when I wanted to give up, relief came when Beckett would make a sign or say a sound that was close to the word of the moment.  With effort, after his first two years Beckett had retained about 5 words he signed or sounded.

This required another avenue of cognitive investigation and so began online research and contact with cognitive specialists.  But no one had definite answers.   I struggled with the idea of him not ever being a productive independent person in society.  Who would take care of him if something should happen to my husband or me.  Would he be dependent on my older children?  Would my extended family be able to provide the time and therapy he needed?   I had to let go of those thoughts and believe that God had a plan to take care of him and that I would be included in that plan.  With worries like these, depression was a constant visitor.  But thankfully sadness was short-lived because my brilliant boy would do something unexpectedly encouraging, which would signal a return to hope and promise.  It was going to be ok.

Never will I forget an afternoon that gave much-needed hope and renewed faith that God listens to prayers.  One afternoon, off I went to pick up the twins from daycare, and there was Beckett sitting looking outside the glass door that led to the playground.  He turned and saw me walk in and smiled…a big smile.  He pulled up on the door handle and took a step.  First one step, then another and then another as he kept walking all the way across the room to me.  I dropped to my knees, crying.  I grabbed and hugged him so close.  To see my little boy walking was extraordinary.  His teacher, Ms. Claudia, also wept.  Her sainted efforts were also a part of the many people helping him.  The news and excitement spread throughout the building and all his former teachers came to see The Magnificent Walking Boy.  He was progressing!   After months of prayers God had heeded the call.  Beckett was walking at 22 months, exactly two months before his 2nd birthday.  It was a moment of pure joy that will forever live in my heart.   

These glorious moments – precious few and far between – keep me going when I feel the pull of despair.

The year Beckett turned two was the most stressful since we learned of his handicapped milestones. 

Our pediatrician referred Beckett to the Blue Bird Clinic at Texas Children's Hospital to see another pediatric neurologist.  The doctor expedited an appointment for us.  Instead of the six- to nine-month wait we were seen within three months.  In the meantime, we kept chugging along, going to therapy and working with him at home.  He was making very little progress and it seemed that new skills were coming at a snail’s pace.   At times I cried myself to sleep.  Some nights I would get barely 3 or 4 hours of sleep and then work the next day running on fumes. The emotional toll was also showing at home and at work.  I needed answers!  I was growing impatient with a simple answer to our question that never came.  When will a doctor tell us what to expect in Beckett’s future.   

At long last we got an appointment to see a doctor at the Blue Bird Clinic.  It was a relief just to be in the waiting room.  But that feeling soon faded into worry and more anxiety.  I showed up with my husband, Beckett and Pyper, his twin in tow.  We waited in an exam room with two chairs, a patient table, and a computer.  You try keeping fussy 2-year-old twins occupied for 30 minutes in a sterile examination room…I dare you.  FINALLY a knock at the door and a woman peeks in and introduces herself as the Physician's Assistant. I was glad we were tended to, but disappointed it wasn't the Main Man neurologist.

I should be grateful but the frustration of unanswered questions had gotten to me.  After the introductions she was taking detailed notes and making close observations of Beckett while he was itching to get out of there.  The anxiety level rose as she recommended genetic testing and an MRI under sedation.  Several genetic tests, I knew, were for rare disorders that could cause a child to have fatal consequences or that would require round-the-clock care for the rest of a child’s life.  These tests were suggested merely to rule them out.  Because some of his symptoms were associated with these disorders the question of affliction lingered, and we needed to know one way or another.  The genetic test I feared most was Rhett’s test.  This is a fatal genetic disorder that, however mild, can reduce a victim’s life to 10 years.  The other tests scheduled were for Fragile -X, along with about 129 genetic metabolic disorders and a chromosomal karyotype.  Aside from a dreaded positive result, my husband and I cringed at the thought of how much these tests were going to run and the very real prospect that the insurance company would deny claims. 

We waited almost 3 torturous months for the genetic results to come back.  During this time I spent untold hours researching genetic disorders.  I was looking for answers that never seemed to come.  I would cry at school and cry at home praying for the tests to be normal.  Meantime, we were still waiting to get a MRI.  Beckett was continuously sick with a cold or ear infection.  After 3 attempts to get him an appointment at Texas Children's for an MRI, we succeeded.  But I hated that day too.  He had to be put under anesthesia for a conclusive view of his brain.  I myself almost passed out when they gave him the drugs that put him under.  My husband was holding him while they administered the drugs.  He fell limp, which was painful to watch.  It was a successful scan and the results would be ready in 3 days.  Again, 3 very long days. 

That day finally came, the moment of truth!  We had the results of both the genetic testing and the MRI.  The PA called and said all the genetic tests were all NORMAL!  I felt my chest sigh in relief.   The neurologist looked over Beckett’s records and related some of the best news I’d had in a long time.  He said that there was a discrepancy in his MRI. He explained that the myelin, or white matter in his brain was at 50%.  A typical 24-month-old has approximately 90%.  Myelin is the plastic covering that insulates an electrical impulse wire. This disorder makes it difficult for him to make connections.  My heart then fell again. The emotional roller coaster is exhausting.  Hope then returned when the doctor said that with extensive therapy and lots of patience, there is an 85% chance that Beckett would be fully functional by the age of 6 or 7.   This mother dreams of that hopeful prognosis every day.  This is a potential result I won’t forget and I pray that this time – this time – the doctor is right. 

We will see, because there are changes every day, good and bad, but for now we choose to hold the most positive light before us.

My Biggest Question....Why?

Dealing with the emotional shock of finding out that our beautiful blond haired, blued eyed, smiley faced little boy had so many problems facing him was devastating to us.  The questions of course began to race through my head of why this was happening to our family.  I would look back at the things I could have done for this to happen. I wondered what I had done wrong.  Did I not eat right, pray hard enough, read my Bible enough, not be the best person I could be? It was like a broken record playing in my head over and over.  The frustration of the unknown lingered and never seemed to subside.  I ask God many times "why" and the answer never came.  I had to teach myself everyday to let go and do the best with what I had to give my boy, while at the same time providing support and attention to my other 4 children.  It seemed like a whirlwind had taken over my life. I was out of control of my own life and I didn't know what to do.

Reprieve came when we received help from the ECI program for Beckett when he turned 8 months old. They provided physical therapy, occupational therapy, and play therapy for him two times a week at daycare. This helped us financially by qualifying us to be on their sliding scale to pay for his monthly therapy.  It also kept my husband and I from taking off work and bring him to another location for therapy.   Before Beckett began therapy we wasn't crawling, turning over well, he could not feed himself finger foods or hold a sippy cup.  He also did not babble like normal.  He did however have a scream that would set off our broken glass alarm.  My husband playfully said he was an "X-Man" and had "X-Man Powers".  That piercing scream would make the hair on the back of your neck stand up.  On the flip side to that he has a contagious laugh.  When he laughed, everyone laughed with him.

His therapy began to help is motor skills and coordination develop by the time he was 12 months he began to scoot on his rear end and was attempting to try and crawl.  We learned through the therapist that every motion he made had to be taught to him.  Hand over hand was key to his success in developing his motor skills & coordination.  On his one year well check we received a recommendation from his pediatrician to have Beckett be seen by an ENT for the continuous ear infections he had since he was 3 weeks old. He also had a concern about his hearing, since he was not talking yet.  He had a numerous hearing tests done, which thankfully were all normal. He and his twin sister both had ear tube surgery the same morning. This seemed to reduce the number of times he was sick. 

Beckett first pair of SFO's before be began walking

A few weeks after ear tubes were put in we found out from his physical therapist his feet are pronated and turn in. He has no arches, he has "flat feet".  This causes problem causes him to lack balance. She recommended him to get SFO's.  These types of braces came right below the knee and were custom fitted by casting.  Keeping a busy boy still for that was a three man job, one to hold his arms, one to hold his legs and the other to cast them. He wears these braces all day except when he his sleeping.  We also found that this was just the beginning of the many appliances and prosthetics he would have to wear. Another finanical hit to us.  These braces run about $2500/pair that must be replaced every 6-8 months, depending on how fast the feet grow.  Needless to say, my husband and I were saying...How much more can we take?...Looking back from now...so much more than we expected.