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.