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.