Possible Treatment for SYNGAP 1 Gene

I have come across an article published December 10, 2012 that talks about the possible treatment for my sons disability.  I am praying that they will find one soon before the window closes on him.  Pray for a cure!  Read the article and pass it along to your friends you know that has a child with special needs or autism.  It could be a medical break through. 
http://sfari.org/news-and-opinion/news/2012/autism-linked-protein-sets-pace-for-brain-development








_My%20Boy%20Beckett_0004d1a5364c07060aec55945b000393&LNM=Merry%20Christmas!%20Spend%20%2475%2C%20Get%20a%20%2410%20Target%20Card%20with%20Promo%20Code%20XMASGIFT%20-%2012%2F25%20Only!

RESULTS ARE IN!!! SYNGAP-1 gene

I am sad and glad at the same time. Today we found out that my son Beckett has been diagnosed with a very rare autosomal dominant disorder called SYNGAP-1 gene. It doesn't even have a name yet. I am hoping to find out more information on it, but there is not much out there in terms of a prognosis.  I don't know whether to cry or breath a sigh of relief.  Texas Children's Genetic Center called this afternoon and told us that Beckett had a very rare genetic disorder that is so new that they even don't know much about it.  They have only just recently identified one more child with the same syndrome in February. We are relieved to find out that it will not affect his twin or his other 1/2 brothers and sister.  Neither Chris or I have the gene defect and the genetic counselor has explained that it was a fluke in nature.  They do not know whether it was caused by the environment or if something just when wrong after fertilization.  Of course, we might not ever know what caused it.   They explained to me that there could be more out there but the test is only a year old and very expensive to run.  Some of the symptoms of this disorder are seizures, schizophrenia, moderate to severe mental retardation, speech delay, and autism type behaviors.  The doctors at Texas Children's have worked us into an appointment on January 7th to see Beckett and talk with us about what they do know and how to move forward with his treatment.  I am now seeking a new direction and feel that I must do something to further the research of how to help he children and families with this disorder. 

I do however, must mention that even though the news I have received today about Beckett, I am grateful that I have him to hold and hug.  Today was a horrible day in our country and I will pray for those who lost loved ones in Connecticut in the school shooting.  My heart is heavy and broken for all those affected.  I realized today that even though I have trails of my own, I am very thankful that I have my children with me today.  I was also reminded that through bad times, God truely will make good for His glory, even if we can't see it now through the hurt.  GOD BLESS THOSE BABIES AND TEACHERS WHO DIED TODAY!! They are in the ARMS OF JESUS NOW!!

Trying To Hang On To Hope....

Considering all the trails that our family has had to face in the last several months, keeping up with my blog as been hard.  We have had many changes in the last six weeks for Beckett.  He will begin Monday with a new daycare sitter.  We have had to move him from his regular daycare he has been at since he was 3 months old due to the change of some of his class situation, therapy and school schedules.  We were not happy with the new teacher arrangement in his class at his daycare.  They seemed to be too young to be able to deal with the needs that Beckett has.  We were very disappointed that this was not fixed or changed for us, considering we were paying for a full time program when he was only in there part time. I do however have to clarify that most of the workers there were great with him.  They were typically older women and not teenagers or college students caring for him.  We now will have him with a lady who will keep him in her home, but she is also one who has a special needs child herself.  We are nervous somewhat, but praying for the best and hoping that she can deal with his needs.

We have had some regression with his potty training due to the fact that the girls in the daycare were not paying attention to checking on him to go use the potty.  He has a hard time remembering he needs to go and needs some reminders every hour or so.  He has started trying to say a few more words and sounds which is encouraging.  We still are trying to teach him the dynovox, but at home he seems uninterested in using it.  He has mastered several icons for needs and food on it with his speech therapist.  We know he can use it, we just need him to understand using it for his needs. 
Texas Children's Genetic Center still has not called us with the results of his EXNOME DNA Sequencing Test.  I have been patiently waiting for some kind of answer.  We are also trying to get Beckett into see a psychiatrist to have him evaluated for a behavior problem that is causing his melt downs.  We are hoping that they will give him something for his OCD/High Anxiety Behavior.  His fits seem to be getting worse has he gets into the stage of the terrible 2-3's that his little brain is entering, even though he is 4 years old.  We have noticed over the last few months he is more interested in toys and musical instrument's that seem to keep him entertained.  We are hoping the we will get to implement music therapy in his daily routine in the PPCD program at school.  We are seeing slow progress with him..I just still have anxiety over what the future holds.  I pray almost everyday that God would heal my little boy...I have to admit that it has been hard to hold on to hope, but I know there HAS to be a PLAN..

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Emotions Everywhere

We have had a lot going on in the Weldon house these past few months.  There have been days I have been on cloud nine and there are the days I wish I could run away from it all and never come back.  Granted I never would just pick up and leave, but I would be lying if I told you I never felt that way.  I guess I am going through a bit of a mid-life, not like the ones you hear of on TV or in a bar, but one where you look back at your life and wonder exactly what kind of purpose you have here on this Earth.  Mine? Well, I'm still trying to figure it out.  I really am dealing with the fact I guess I'm gonna get old one day. I will go out kicking and screaming just fighting age. I think about all that I deal with on a daily basis and how am I going to be able to keep up with my preschool twins and of course three older children, two of which are adults.  Beckett is obviously a handful. His twin Pyper, well she is a little spit-fire all her own.  Don't get me wrong, I love my children but they sure are hard work.  I find myself trying to keep in shape, trying to eat right, making sure I'm going to stay healthy for my kids that I end up getting sick and tired literally. Then on top of all that feeling guilty about it.  I know its crazy thinking but I think every mom goes through that at some point.  I am still trying to grasp my purpose..even though one is clearly being a mom and wife.  Sometimes you just want to do more in life...but is there more than that?  I'm not really sure, but I truely think there is. See, I even feel guilty for saying that I guess because I have always been about my kids and family in general. 

Mystro Please!!

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Well, I know it has been a while since I have had a chance to update my blog.  A lot has been happening in my personal life that has interfered with our normal routine.  I am now in a custody dispute with my ex husband over my 2 teenage boys.  It has been a challenge to try and keep on track with Beckett and deal with unplanned events that are happening around us.  Never the less, I must press on and give God the fight over to Him.  I have learned through the last couple of months to truly know what it means to be thankful in my circumstances.  I am allowed to have justified anger, but to know that God will see me through this and that He has a plan, which I learned AGAIN, that it is not always my plans he has for me. ;)  Keeping a smile on my face has been hard, but for the most part I am at peace and I know the truth will be shown for those involved.

Over the past couple of months Beckett has started school again and is now adjusting to a new routine.  He doesn't get a nap this year in the afternoon.  We are feeling the effects of this every evening when we get him home.  He tends to scream and kick until I can get him fed dinner.  We have been giving him a bath right after he eats.  He has been going to bed around 7 every night and sleeps until 6 in the morning.  I am hoping that he adjusts to his new routine soon. 

Besides the new routine adjustment, we have just gotten his new device called the Dynovox Mystro.  This full operational computer is going to be his link to communicating with the world.  I was so happy when we found out that our insurance company paid the full $9,000 for it.  This was an answered prayer that God could only do!!  I am blown away by all the things that he can do with it.  Beckett is catching on slowly, but I am sure that over time he will be able to communicate is basic needs in a few months.  He carries it with him everywhere. It even has his favorite restaurants programed in it with his favorite foods.  His frustration level will be incredibly lowered using this to tell people his needs. 

Beckett telling me he has a "Book"

 

In the meantime, we are still waiting for the results of our 3rd round of genetic testing to return.  We also got an answered prayer that the insurance company paid in full for the $15,000 test.  YES! That is correct..$15,000!! We thought we would be responsible for at least part of it at some point and were amazed again how God works when we just don't think He is going to have it in His plan.  GOD IS SOOOOO GOOD!

Round 3

Got some more huge news last week about my baby boy. Texas Children's Genetic Center called and they have approved him to be a part of a study for rare genetic syndromes!!! He will be taking the Whole Exome Sequencing Test. The best part is..they said insurance will pay 100% of the genetic test!!!!This ones about $6000 buck-a-roos!! So off to Texas Children's to this week for Beckett, Chris and I to give blood. Please pray they find the answer we have been looking for. We are also waiting to here if he will qualify for the Human Genome Rare Diseases Study in Maryland..maybe I'll get to see the East Coast if we get to go.

                                 Riding on his pawpa's tractor at his ranch in Madisonville, Texas

Beckett is making more milestones everyday.  He is almost fully potty trained.  He still forgets if we don't remind him.  But he is in big boy pants all day and a pull up at night.  He stays dry throughout the night!! YEA!! I huge step we have been working on since Christmas.  The daycare has recently moved him into the 3 year old room.  He is trying to make more sounds and is imitating behaviors of his peers.  We are beginning to watch him play more functionally with toys..especially cars.  We are still trucking on.  We are in the process of getting a Dyno V communication device.  Hoping that insurance will pay for it 100%.  The therapist seems to think he will do well learning how to use it.  This will make communication so much easier for him.  God truly answers prayer.  When you begin to give up He reveals Himself when you least expect it.  GOD IS SO GOOD!

My Medical Mystery

I am dumbfounded, I don't really know what to think or do now.  We got back our second round of genetic testing and Beckett's result were normal, ALL NORMAL!!  I am glad and I am shocked at the same time that the doctors found absolutly nothing in his genetic testing.  His microray came out normal, he has no signs of the three creatine disorders, and has no genetic irregularities of organic compounds and now I am at a loss.  The genetic doctors did say that they only find about 80% of the causes for global delays in these tests.  I was sure that they would find something, but they didn't.  This only means that we are headed to the next stage of testing.  This time we are going to try and get a x-nome test done.  This will search for very slight irregularities in the chormosomal DNA of the X chromosome.  This could possibly mean that he has a very rare genetic disorder.  This is scary because this means that the information on the types of syndromes is very limited.  My oldest daughter even said "maybe Beckett will be named after his rare disorder, if it doesn't have a name".  I told her I have mixed feelings about that.  I was hoping that it would be something well known so that we would know what the future could hold for our little boy.  On the other hand I would make it my mission to help any other child that was suffering from the same thing. 
Beckett has just recently celebrated his 4th birthday in May.  I have noticed he is getting more mature and is becoming more verbal than he ever has.  He tried to sound out the word "cake" to ask for a piece of his brother's birthday cake, I was so extatic that he said it. Just yesterday out of the blue he said "baby".  I was watching my nephew who was 14 months old and I told him to be nice to the baby, and he just said it clear as a bell.  I am not sure exaclty what is happening to Beckett, but I see accelerated progress with him.  He is actually beginning to go to the bathroom himself without being asked.  He still needs help, but he asks or pushes his button to go.  I do have to say I know God is answering our prayers.  I am coming to a point where I am accepting what I am being faced with and finding a piece with it.  I do admit sometimes days are hard, but it is getting better.  I am also trying to acccept that Beckett could just be "our little medical mystery" and might not ever find an answer.  Sometimes I do realize that that's also how God answers a prayer...He sometimes doesn't answer with what you are asking Him to do.  I am being taught something or He is growing my faith. Even though at times it is very hard and I really don't like it, I know he has my best interest at heart.
Jeremiah 29:11
For I know the plans that I have for you,’ declares the LORD, ‘plans for welfare and not for calamity to give you a future and a hope.

Potty Training & etc...

I have no idea even where to begin.  Do I start with how we are going with potty training or do I start with the transition time from daycare to the house during the afternoon?  Umm....well these two particular events have been the hardest thing I have ever had to do in my life. I actually thought that teaching middle school was much harder.  Boy, was I totally wrong!!
Potty training with Beckett has been quite difficult.  Getting him to tell us he needs to go is the hardest part. We have a digital voice box that has a button he pushes that his PPCD teacher has recorded the message, "I need to potty".  When we first put it up I think he pushed the thing 200 times.  Of course, this helps us know when he needs to go; if he'd use it the right way. We began to bring him every 30 minutes when we can.  Beckett can control himself for the most part, but its getting him to try and complete all the steps that's hard.  Due to his lack of motor coordination, he has a very hard time pulling his shorts and pull-ups up and down.  He knows to do all the steps, which is the frustrating part for me also.  Since summer has begun Beckett has gotten better about having fewer accidents and letting us know he needs to go. I finally got around to getting a second voice recorder to the daycare.  Within one day he learned to let his teachers know he needed to go potty by pushing the button.  Funny thing is all other 19 children in his class did the same thing. I warned his teachers of the "new novelty".
I know he still has trouble coordinating his motor skills to master all the steps to go potty.  I never really thought about the process of something very simple to the average person as being a really difficult one when you think about it. So far, it's been a week and he has had only one accident.  Hopefully by the end of summer he will be able to let everyone know when he needs to go.

Look Who's Watching

I am learning more and more each day how some people are either truly compassionate to a person's situation or they really don't care much about other people's lives at all.   I find that it probably runs 50/50 with the people I meet or run into.  I understand that people fear what they do not understand.  My goal and purpose has changed to not only raise a son who is independent and happy, but to help people understand that special needs individuals are also special gifts from God.

I find myself getting defensive about negative comments people make and the classic looks I get when I go into public when Beckett begins to scream and squeal so loudly it could break glass.  I find older people in their late 70's give me the worst looks, people in their 50 -60's make the rude comments, and people in their 30 - 40's for the most part say "Oh my, he's loud" and smile, and anyone younger seems to just ignore it.   I really don't mean to stereotype people. I can only judge what I have experienced.  I think for the most part it is a generational thing.  I think the younger generations are more exposed to the language used to describe autism and other intellectual disabilities.
I have been told to "control my child" and "you really need to discipline him for that".  It's almost comical that they don't even know he can't talk.  Usually my response is to say, "sorry, but he doesn't have any language and can't talk this is how he communicates".  Most of the time they turn bright red and walk away, while other times they look at me as if they don't care.  Sometimes they have even left the store altogether.  It's as I intruded on their world and how dare I even bring him into public.  Usually, it's because of their own ignorance and selfishness.  I have even been ask "how could I even bring a child like that into the world?" I have responded by telling them.."He is God's gift to me and I would have never even have thought of terminating him, giving him away, or even putting him away in a home somewhere".  He is created in God's image and is fearfully and wonderfully made.  I do have to admit, I usually don't respond to that nicely at all and respond in a defiant voice myself.  I defend my child and would stand up for him to anyone. Yes, I do realize I can't change anyone unless they want to be changed.  I do have to be careful about how I respond and think before I speak. I try to be an example of what God wants me to be and I will be the first to admit I am not perfect but will always try to remember that other's are watching.

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

One of the Hardest Days Yet

I am skipping forward a bit through my walk with my boy Beckett.  Today was a day that I can't hold back from sharing my tears of sadness.  Today was a grueling day of testing for Beckett at Texas Children's Hospital.  He saw four different doctors that evaluated him for autism, psychology, developmental pediatrics and neurology.  After the 6-7 hours of testing we were told that they are taking the autism diagnosis away and re-diagnosing him with mild mental retardation. 

My heart sank to the floor..really it went below the floor.  I was being told that he would never be able to live independently or progress over the cognitive capacity of a 12 year old at best.  I was not expecting that at all.  It seemed that all the hopes and dreams I had for him vanished into thin air.  His dad and I couldn't hold back our tears.  It was a blast of information that I couldn't process in the hour we were getting all the feedback.  We were asked if we had a will to be able to appoint a legal guardian for him if we died, we were told he would possibly never be able to be left alone or take care of himself.  We got information on the process to enroll him in an adult program for the mentally disabled.  On top of all this information that he could have a genetic syndrome causing all of his problems. 

I am trying to tell myself that they are painting the worst of the worst of what it could be for his future.  I have told myself that only God knows the future for anyone of us.  I also know and am trying to believe that God can heal him and make is future as bright as my other children.  I have to believe and have faith in that.  Right now I have to honestly say may hope has been crushed and while I write this tears well up in my eyes.  My heart is crying out to the Lord to give me strength to endure this trail that has an uncertain path and believe that He will carry my husband and I through this.

Some Saving Grace

The 3 weeks Beckett attended PPCD was a sneak peek to what he was going to be introduced to for an entire school year. It was finally hope being realized. The road of over coming obstacles was just beginning. We set his IEP goals for the upcoming school year and were excited to see if he would master or even exceed those goals. His vocabulary was limited to about 10 -15 words. He mostly said "bye-bye" to everything. We set a goal to have him work on single step commands, like "pick up the trash" or "hand me the spoon". He also needed to begin to identifying items in sets of 3. We would ask him to point to the picture we would ask him about. Examples would be like, "shirt, pants or jacket". This was frustrating and disheartened to us at first because we could not keep his attention for more than 30 seconds.

He pointed to the beater..I couldn't refuse:)

His frustration level was over the top when he tried to communicate his needs with us and sometimes he would scream for hours. The whole time trying to guess what he needed. We knew that he did not qualify for a summer program through the public school system, so we took another financial burden on to bring him to speech therapy twice a week. We knew that if we didn't that he would not make small gains. We also had help for us to learn new techniques of communication with him in the form of signs, pictures and teaching him hand-over-hand skills at pointing to an object.

In the meantime, I was researching all I could to find out to why he was having these problems. I decided to take a scientific study I had read and use the information and make him my "little science experiment". This study was done somewhere in Europe, but it caught my attention. I figured it wouldn't hurt and maybe I would get some results over a period of time. We already knew that he has delayed speech and that therapy would be apart of his life for a long while. The scientific study I read had to do with a group of speech delayed children ranging from the ages to about 2 years - 10 years. The scientist made a small scientific break through with what Omega 3 & 6 oils do to increase the brain development in the area of speech. They recorded that out of about 650 children about 85% had a measurable increase in speech development over a 3 month period.

I said to myself "what could it hurt". I called my doctor and he was in agreement with me. He said that all children should take some form of Omega 3. Well, after that I went out to the store and bought a 30 packet months worth of fruit flavor gel packs to give him everyday. I noted that we started in June and continued throughout the summer months and along with speech therapy he began very short spurts of new communication. Most might see it as not measurable, but when a child that has almost no language skill signing more and pointing for more juice...that was a huge milestone. I knew that something was working, but I knew that once he began PPCD in the Fall he would make incredible gains. This was going to be his saving grace.

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.

Slow Moving Stream

We noticed that when Beckett would begin to make gains and advance a little, other characteristics would pop out in his personality. His tantrums became unbearable at times. Every time the front door opened and the chime went off, he raced to the door as fast as he could to go out. When he was about 30 months, we noticed that he became fascinated with water. This was a soothing activity for him.  His focus was scattered and when we could get his attention, it was only about 2 -3 minutes at a time.  I knew this was going to interfere with his learning. 

Our Little Water Boy

We were about 6 months away from enrolling him in our PPCD (Preschool Programs for Children with Disablilities) program at our local elementary school.  I was anxious to get him in so that he could have more regular and consistant intervention.  It was also feeling relief because the PPCD teacher was the wife of a coach my husband worked with.  But not only that, I had gotten feedback from other parents and employees that knew her and they said she was one of the best teachers in that position.  I knew she was going to take care of our boy.  In the meantime, we were waiting and preparing for his transition and were getting a better idea of how his progress should be moving. 

His therapist from ECI would tell us that development came in a particular order.  He would have to master his motor skills, both gross and fine before spoken language could be mastered.  He had a long way to go.  We were still trying to get him to eat with a utensil, hold an open cup to drink from and suck threw a straw.  He was able to walk upstairs, but not down yet and unable to jump.  It was heart breaking to watch him trying to jump. We knew he wanted to and just couldn't get his feet of the ground.  It was going to be a slow road a go. 

The funny thing is about his personality was all said in his name.  I had a hard time trying to find out what his name actually meant when he was a baby.  I ordered a Birthday Keepsake that had the information about his birthday day and it included the meaning of his name.  My husband and I weren't suprized to read that his first name means "Slow Moving Stream".  He was definaltly like a slow moving stream.  The one thing I think about a slow moving stream is that they start out slow  and as they move along their path then the end becomes a roaring wide river.  I know that Beckett will one day overcome his obsticles and become a strong determined individual that has many gifts to offer this world.  That is my prayer for him and I know that God will be faithful to answer it.

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.

A Year To Remember

I think the year Beckett turned two was probably the most stressful since we learned of his milestone delays.  We had no idea that the financial burden of therapy, doctors visits and prosthetics would have on our family.  Our pediatrician referred Beckett to the Blue Bird Clinic at Texas Children's Hospital to see another pediatric neurologist.  The doctor called and expedited an appointment for us.  Instead of the six month to nine month wait he got us an appointment for about 3 months out.  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 things were coming at a snails pace.   At times I found myself crying myself to sleep, praying to God that He would heal my little boy.  Some nights I would get maybe 3 - 4 hours of sleep and going to work the next day running on "fumes". The emotional toll was also showing at home and at work. I needed answers! I couldn't wait to get into an appointment to see a doctor who could tell us what to expect an where to go from here. 

After a wait that seemed like forever, we finally got into see a doctor at the Blue Bird Clinic.  It was a relief just to be in the waiting room.  But that feeling would soon fade into worry and more anxiety.  I showed up with my husband, Beckett and Pyper his twin in tow. We then waited in the exam room with two chairs, a patient table and a computer. Trying to keep 2 years old twins occupied for 30 minutes was a challenge in itself.  FINALLY!! A knock at the door!! She peeked in and introduced herself.  Low and behold she wasn't a doctor, she was a Physician's Assistant. Don't get me wrong, I was glad we were in, but disappointed the it wasn't the "neurologist".

 I guess it's selfish and I should be grateful but the frustration of everything had gotten to me.  After the introductions we continued to share our concerns with her.  She was taking details notes and making observations of Beckett while he was fussing to get out of there.  The level anxiety rose as she began to explain that she was going to recommend genetic testing and an MRI under sedation.  Several of the genetic tests she recommended to have done were rare disorders that either caused a child to have a fatal consequences and or one that would cause him to be needing round the clock care for the rest of his life.  Even though she reiterated that these tests were to rule them out, there was no guarantee that he would not have one.  Some of his symptoms were part of these disorders and the question was there that needed to be answered.  The one genetic test I fear most was the Rhett's test.  This genetic disorder caused boys who had this fatal disease, even mildly only lived a life span of 10 years old.  I couldn't imagine my boys mid-life at 5 years old.  The other tests that she had ordered was Fragile -X, along with about 129 genetic metabolic disorders and a chromosomal karyotype.  My husband and I cringed at the thought of how much all these tests were going to run and "go figure" if insurance would ever pay for them. 

We had to wait almost 3 torturous months for the genetic results to come back.  During this time I spent hours upon hours doing research on the Internet.  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. We were still waiting to get a MRI.  Beckett was continuously sick with a cold or ear infection.  After about 3 tries to get him to Texas Children's for an MRI, we got him in.  I hated that day too.  He had to be put under anesthesia for an MRI to get a conclusive view of his brain.  I 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.  I hated watching that.  I had a sick feeling in my stomach watching him be carried away. It was a successful scan and they told us the results would be read in about 3 days. Again the 3 longest days I had in a long time. 

That day finally came, the moment of truth!  We had the results of the genetic testing and the MRI. The PA called us with the results.  She said all the genetics tests were all NORMAL!! I felt my chest fall in relief. She had the neurologist look over his records and some of the best news of hope I had 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 basically the plastic covering that insulates an electrical wire. This disorder made it difficult for him to make connections.  My heart then fell again. The emotional roller coaster is exhausting, you never know how or what to feel.  The hope then returned when the doctor said that he believed with massive amounts of therapy and lots of patience, he thought that there would be an 85% chance that he would be fully functional by the time he reached the age of  6 or 7.  I bank and pray on that hope everyday.  This is something I haven't forgotten and hoping that this time the doctor's right.  Of course we will see, because there are changes everyday, both good and bad.

Year 2: Future Unknown

The second year of Beckett's life was full of uncertainty. He was now in therapy through ECI (Early Childhood Intervention) and making small steps to improvement with his motor skills. He began walking with a walker that helped him develop his lower body muscles. His therapist was an ex-marine and her demeanor and motivation techniques did wonders with him. He is a stubborn, bull headed little boy and a bit spoiled.  Sometimes I thought she was too tough, but I understand now that was necessary to set an expectation for him to meet.  Just because he was slow, didn't mean he couldn't learn.  Repetitive commands and hand over hand help made him see he could do on his own. 

Besides our concerns of his motor development came concerns of his cognitive development.  He had and occupational therapist and a play therapist that came to work with him on a weekly basis.  They taught him to hold a cup, turn pages of a book, use a crayon and many different type tasks. A normal toddler typically would just pick up by just watching someone or shown how to use these things with ease.  Beckett was not interested in toys or even watching cartoons on television. Most of the time he wondered aimlessly around.  Almost seemed like he was in his own world, investigating what was around him.  I almost thought he was on a different level than some typical children. At least that is what my "gut" said to me.  My husband and I became very concerned about his ability to learn.  Processing a task took him a long time, not just minutes, but days and days of repetitive working at it.  I found my self saying words to him hundreds of times a day.  I think I dreamed about "more", "juice", "milk", "eat", for months. I felt helpless sometimes when he was not getting it.  I just wanted to quit.  I guess God knew what he was doing, because just when I wanted to give up, relief came when he would make sign or say a sound that was close to the word.  He probably only had about 5 words he signed or sounded during his first two years of life.  His frustration level was incredibly high and I felt so helpless.  I was doing all I could and some days I was just spinning my wheels.

I began doing research online and talking to doctors about his condition.  Of course no one had any definite answers.   I struggled with the thoughts of him not ever being a productive independent person in our society.  I worried about who would take care of him if something would happen to me or my husband.  I ask questions like,"Would my older children have to help him if I'm gone? & Would my extended family be able to help provide the therapy he needed if I wasn't here?" I had to let go of those thoughts and believe that God had a plan and I am included in that plan to take care of him. I struggled with depression all the time.  But somehow, someway it was short lived, because Beckett would do something new that would make the hope return and it was going to be ok.

I will never forget an afternoon that gave me much needed hope and a new faith that God does listen to prayer and answers it.  I went to pick up the twins from the daycare, I saw Beckett sitting looking outside the glass door that led to the play ground.  He turned and saw me walk in and smiled a big smile like he usually does.  His teacher and I were not expecting what came next.  He pulled up on the door handle and took a step, not just one but he kept walking all the way across the room to me.  I dropped to my knees crying. I grabbed him and hugged him.  I could not believe that my little boy was walking.  His teacher, Ms. Claudia also broke down and cried. She was also a part of the many people helping him over come his obstacles. The excitement spread through out the building and all of his former teachers came to see him walk.  I was relieved that he was progressing. I knew that after I was praying for months for him to walk that God answered one of my many prayers for him. He walked at 22 months, exactly two months before his 2nd birthday. It was a joy I will never forget. These are the moments that keep me going when I fall into a "rut" of despair.

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.

Beckett's First Year

During Beckett's 6-month well-check the doctor said that he would need an therapy evaluation to check for a condition called ‘hypertonia.’  This neurological disorder causes the muscles in the body to lose tone, which results in weak muscles and spasms that cause them to get rigid and stiff.  Hypotonia, we believed, also caused him to have lazy eyes, or strabismus. This then sent us to an ophthalmologist at Texas Children's Hospital in Houston.  To lessen the effects of the affliction, Beckett wore a patch on each eye, every other day for one year.  He also was treated for acute acid reflux, and taking prescription medication daily. We found out later that all these were symptoms were the result of the hypotonia.  Further, we were referred to a neurocrainal surgeon to treat a condition called phagiocephaly, also known as "flat head syndrome."  Custom-fitted for a helmet he had to wear this for almost 11 months. 

Simultaneously, insurance claims were being challenged.   For treatments, tests, and specialists so far, we were receiving bills upwards of $4000.  To no one’s surprise, the insurance company denied the claims.   Back-and-forth we went for almost a year.   We were however fortunate to learn that the company that fitted him with a helmet waived $3000 of its expense after we paid them $1000 cash.  But still, bills were adding up. 

Beckett at 5 months old before his helment

On top of the neurological and the undiagnosed global delays, Beckett was sent to see a neurologist for possible signs of seizures.  At 14 months I noticed sudden jerks and rolling of his eyes.  A CT scan and EEG test returned results of o seizures or abnormal electrical impulses coming from the brain.  A ray of good news, finally!

Needless to say, these tests and screenings were just the beginning of the many specialists my boy would come to know during his first months by my side.  Meantime, our frustration was building as we tried to find answers for his conditions.   We wanted desperately for someone to tell us definitely what was strong.   In the continuous search for finding the best possible care, we focused on getting him help through Occupational Therapy at Texas Children's Hospital, and eventually through our Harris county ECI (Early Childhood Intervention) program. The emotional and physical strains were taking their toll on my husband and me.  We were trying hard not to think about the financial impact this was going to have on our family, but expenses were never far from the back of our minds.

In Beckett’s first year we became familiar with hypertonia, strabismus, phagiocephaly, CT scans, and the ever-lingering fear of not knowing how to save our beautiful boy from medical conditions best left unfamiliar. 

The Beginning of Beckett's Story

The Beginning

My husband and I decided to have a baby.  This was my second marriage and my husband had no children of his own.  Three children from the first marriage was an obstacle to overcome.  I had had a medically irreversible tubal ligation at age 28 after my third child. Upon weighing options we decided to take a chance with in vitro fertilization.  After initial testing and under ideal conditions we proceeded with the regimen of injections and the stressful hormonal ups and downs of IVF.  Then, one happy day, we were very delighted and excited to learn that of 3 implanted embryos, 2 of the rascals had made it.  We were doubling the fun and having TWINS!

During the pregnancy we had several frightening experiences of losing them.  I prayed that God would protect my babies and keep them healthy and bring them to full term.  On bed rest for 19 weeks, I held on with them until the C-Section at 36 weeks and 6 days.  My baby boy was 6 lbs. 13 oz. and my baby girl was 7 lbs. 2 oz.  Both were healthy and to prove it they exercised full lung capacity upon arrival.  We were deliriously happy about the new additions to the family.  Although, the first week was incredibly stressful, as I was rushed to the hospital 7 days later to discover that I was in liver failure.  Turns out I had an infected gall bladder with a large gall stone the size of a marble blocking the bile duct.  Admitted immediately, the ER doctor ordered tests to ensure that my pancreas was not also infected, otherwise I would be need emergency surgery to save my life from the toxicity of the infection  Thankfully the tests came back normal – relief  –  but “I would not be going anywhere!” I began to cry, not so much for me but for my husband who was left stranded at home with the newborns.  I wasn’t as nearly concerned for my own life as I should have been even though the doctor said I was very lucky to be alive.  Still, my focus was concern for my babies and my husband who needed help and my two extra hands. The worries would have to wait however because over the next 10 days, I underwent 3 major surgeries.  Had my gall bladder ruptured I would have had only 25% of recovery because of the toxic infection.  After four more days on the mend, I finally got to go home to my babies.  Looking back on those harrowing days, I now know that God kept me near for a larger purpose.  I just had no idea at the time what it was. 

The first year was an eye opener to say the least because I was unprepared for the challenging path that lay ahead.   Raising young children, a mother hopes and prays for a natural growth and progression of the infants.  Baby milestones mark progress.  The first few months of the baby’s lives I didn't think much about these natural milestones. Possibly, because of sleep deprivation and maintaining a full-time work schedule.  But a few months in, I noticed that my baby girl, Pyper, was right on target with milestones as she sat up, crawled eagerly, and took a keen interest in toys.  Whereas, my baby boy Beckett could not hold his head up or sit up on his own without being propped up by a pillow.  Mental notes I started taking of the odd behavior he began to exhibit; like screaming during baths and an inability to focus on toys or to hold them. His muscles became rigid, yet weak and limp. He would lie stiffly on a changing table during a diaper change.  Very soon, these disturbing patterns began to tug at a mother’s instincts.  Something was very wrong with him.  My suspicions were confirmed during a 6-month check-up when the pediatrician expressed concern. Thus began a journey any mother or father dreads embarking upon.