The Lighter Side

Funny, as I have just gone through another nervous breakdown and took about 2 days to only gain partial sanity back.  I was reflecting today about the things I have learned throughout this journey. I will share with you the things both good, bad and royal pet peeves that I have experienced throughout this journey.  First, I want to start by saying; the worst phrase any other person that has not gone through this before is, "That God doesn't give you what you can't handle"!  I CALL BS ALL OVER THAT!  That is the most absurd and ridiculous statement anyone could say to a parent of a child with special needs.

I mean seriously, you think He gave us this life to make us "handle it?"  Dear God People! Get your head out of your ass!  Any person that goes through a hard time has to either cope & deal with it or just go off into the deep end.  Seriously!
I mean really?  What am I gonna do?  Just be "happy and strap my ass in for the ride?" Come on?  No, we live just like anyone else.  We may have more breakdowns than most, but that doesn't mean we are stronger than the next guy out there.  As you can see, that is my biggest pet peeve.

I have learned more about life and people in it and their real motives behind why they do what they do.  It's quite sad in fact that you have people who are aiming for the same goal, yet sabotage the efforts you put forth because of their own self-serving attitudes.   Yes, those people will be in my book. Don't worry. I keep all the written documentation to prove otherwise. It's quite surprising what people actually put in a written word that they think will never see the light of day.  To them, I say; thanks for the new material!

But on to the lighter side.  I have learned many things in these last 10 years that I never once anticipated.

#1 Nervous breakdowns are regular occurrences. No way of getting around that, they just happen. I seriously should buy stock in Kleenex and wine.

#2 A therapist is an absolute necessity, no way getting around it because they understand more than your friends and/or spouse, plus they are sworn to confidentiality and can't go talk shit behind your back like some of the other people you realized really weren't your friends, to begin with.  Ummm?  Maybe I should have everyone sign an NDA and sign a "real friend" contract before disclosing any useful information that they could take and write a book for themselves. However,  I do have a few close friends who I trust with my life, but then I got dirt on them too.  ;)

#3 Marriage entirely is non-existent, and sex. Yes, we live together, but the lack of time building a relationship is put on the back burner due to the fact you are either getting over the nervous breakdown or just dealing with all the other needs in the family. Most of the time we walk by each other and say "hey, you get the mail today?"

#4 I learned there are more Cabernet and Blended Wines in the world I have not yet tried. HEB here in Texas has a selection that I could honestly spend hours in.. So, is it wrong that the grocery store manager knows you by your first name in a city of 8 million people? Ok. I am jesting people..kinda.

#5 I never ever need to go to school again.  I know more about the human brain than most Ph.D.'s.  Ok, well maybe not that much, but enough to get people to question if I am.  I just expect an honorary doctorate from somewhere before I die.  It's a bucket list item.  I learned you don't need letters behind your name to prove your worth.

#6 I need to get paid much more than I do for the things I do.  Yes, I said it.  Being a teacher for 23 years, it made me realize that we are worth more than they give.  That this is true for those, who lead nonprofits as well.  The old adage, you get what you pay for.  If you have all the volunteers, then they won't do a job like its a "real job." Well, not me, but others.  This is my calling. I did for nothing for over 3 years. Thing is others expect to work when they want to or not at all. You pay people, you will have better quality work and program outcomes. Part of it is understanding and having the right people backing you to get the mission done. Funny thing about that too is people just can up and walk away from the mission and their commitment, that's ok.  But for me to walk away, absolutely no way!!  Surprisingly to think a couple wanted me gone through this whole process. Funny, neither of those people did shit to help the cause either. Those backstories will go in the book as well. Wonder who would have stepped up and taken on the projects and programs and done the exact job I am doing now? Then never measure up to their own responsibilities. I have NO respect for you! That's when I learned people can kiss my ass!  By the way, next time you see me come to say "Hi"! Some may even say it's unprofessional to bring up. I call it being transparent.

#7 Your future is dismal if you have no support.  In my case, the family has just gone on with their own lives rarely calling to check in or even to come by to say hi.  Very disappointing!  So I learned to stop expecting things out of people because you won't be disappointed when they don't do what you want.  Consider it a gift when they do come around.  I learned I need to depend on myself. I continue to chug through, and on bad days you see it through every minute hoping that the next day will be better.

#8 Social media is a farce! No matter what.  Anything you post is going to offend someone.  Me to You.. Get over it!  I usually tell them to suck my big toe.  I will not change who I am for you or anyone else.  It also has become a necessary evil.  Great free advertising and a tool to drive depression that shows everyone in the world your life is excellent.  PLEASE!  Your life sucks behind the scenes just like everybody else..LOL! No one walks around with no problems.  EVERYBODY HAS PROBLEMS, especially us families raising kids with special needs. Keep scrolling if you don't like what you see. If you judge me based on what I post, then you aren't my real friend, and we don't need to be connected.

#9 There is NEVER enough money.  No matter how hard you work, there is always something.  But, there is still enough left for wine!

#10 Who said leaders had to act differently than the average joe?  We are people, we shop, we raise families, we have marriage problems, get divorced, separated, have financial issues. You name it we experience it.  Leaders aren't perfect.  But I learned that the world expects you to be "different" when you are facing the public. My dilemma,  I don't really care what the public thinks of me.  As long as I am doing the job I was hired to do and am performing at a rate that is not backward, then people can't say much.  Pick me apart... I bet I could find many skeletons in closets of those who are so ready to judge that would make your hair curl and skin crawl.  Being a leader doesn't mean you never fall or fail, it means getting back up to complete the tasks at hand the very best way you know how.

In closing, things always come home to roost.  Never underestimate a person that has a calling and doing their damndest to help those in need.  When you can match up efforts with the person whos kicking ass, then and only then do you have the right to criticize anything. Its then on you to do your best to carry the same load.  These are the truths I live.  If people have an issue with me being real, then that's your problem to bear.  Not mine. 

It's a Marathon, Pace Yourself

I am sitting here next to my little Bean thinking that this is a race that never will end. I realize that he has so much to offer and he has taught me so much about life.  But on the other hand, I feel so guilty that he has these problems. He never ask for them, let alone deserved any of it. I get frustrated having to deal with the changes that happen everyday. It is like living a continuous state of post traumatic distress.  He is so cute and adorable when he is just happy and having fun, but when you tell him "no" all hell breaks loose and he turns into a different child.  The art of distraction is the key to curbing these horrendous meltdowns. My problem is trying to find different things to take his mind off what he is upset about.  The emotional and physical toll is taxing on your body, mind and soul. I have to reach deep into myself and find the strength to deal with this life I have been given. The good Lord above is my only strength.  I don't know how anyone does life with out relying on faith. That is my only hope.  Some days are wonderful and some days are absolutely pure hell.  His behavior over the last couple of  months has been erratic and we have started a new seizure medicine called Lamotrigine. It is suppose to help control the seizures and help curb the behavior. We have to watch for a rash that can be lethal and it will take a couple months to get him titrated up on the higher dose to see a full result of its effectiveness.  I have been told by several people that when children like him are growing, their brains are changing and that is when the behaviors are much more prevalent. So living day to day is the key.  Honestly, the older I get, the more fear I have that I will not be strong enough or have the energy to deal with his behavior.  I am already so tired and have no idea what it will be like in 10 years.  I will be 55 then and can't even imagine those days.  I already have very little help from my family or my husbands family.  To be honest, I am wondering when my husband and I will ever be able to spend a night away from home just to be together for any type special occasion? We haven't been over night anywhere in 5 years.  I think the last time we went anywhere overnight alone was when the twins were about 10 months old.  Of course that was before we knew exactly what he had and was not to hard to cope with at the time.  What will probably end up happening is I will have to pay someone tons of money to do it and then worry the entire time that my Bean will not be cared for like he should.  So I just sit and imagine myself going to Hawaii sitting on a beach with my husband and hoping when I get to Heaven that it is much better than Hawaii could ever be.  I do have hope that things will get better as soon as we can figure out the proper medicine for him.  It just seems to take forever.  I haven't given up hope on miracles either. I believe in miracles.  I believe that there is a purpose of why all of this is happening.  I just need a break sometimes.

Beckett and his twin Pyper at the Houston Zoo Lights 2014

My husband told me something the other day that I have thought about ever since.  I was complaining to him my discontent and frustration about how everything just seems to get harder and never seems to end.  He told me "Monica, this is a marathon, pace yourself!"  I was kind of taken back, but I stopped and thought about it. He was right. I need to just keep on keeping on, but deal with things that come up and not worry about the things that are out of my control.  He reminded that worry is just borrowing trouble.  Things will be the way they are going to be.  I will keep running, pacing myself.  I am determined to finish this race.  I might not win any trophies, but I will know I never gave up and if I have to drag myself across the finish line, I will.

1 Corinthians 9:24 Do you not know that those who run in a race all run, but only one receives the prize? Run in such a way that you may win.

Just Me

Have you ever just wondered how you were going to live through the day, hour, minute or even second?  I am sure that we at some point in time have all been there. When raising a child with special needs there is never a true time of rest and relaxation. Many people don't know that because they haven't experienced it. I get frustrated sometimes that people have known you for years still just don't get it. On the other hand I am still very thankful for the ones that do. The hardest part for me is lowering my expectations of what people should be doing to help.  Sometimes I don't have family that is available or they choose not to help as much as I expect them too.  I am totally exhausted and need a break. 
My mind continuously races and I think about the future and if it will ever get better.  I know that I have not given up on trying to make things better, but the fact that I am mentally and emotionally drained and it doesn't seem to go away.  I am probably going to be cynical when I say this..but I really get sick of people that tell me "everything happens for a reason" or "God has a plan, you just don't know it yet".  Ya know?  I haven't lost my faith or believe in what God has planned for me, I am just so very tired. That just makes me want to slap the next person who tells me I am going through what I am going through because I did something wrong in my life and this is just Gods way of "getting my attention". Maybe?  I just choose to believe that right now I am suppose to just live day by day.

I try not to think too hard about tomorrow because we aren't promised tomorrow.  You will also have to excuse my sarcasm.  I wouldn't actually slap someone, but as my husband has jokingly told me in the past, "I just slapped you in the face with an imaginary fish".  All joking aside, it is scary and I'm left wondering when  Chris or I are gone, who will take care of my Bean? These things run through my mind daily.  I am told it's normal, which I am sure it is, I just don't let it paralyze me.  I have accepted the fact that for the rest of my life I will have to take care of a person who will not be able to take care of himself.  I still hope for a treatment or a cure, but I am trying to be realistic about it all.  That is a hard pill to swallow. 
I get frustrated when I try and talk to people who believe that he will "get better and grow out of it".  Yes, I do still hope for that, but in reality it isn't going to happen unless a miracle from God heals my little boy.  Which I guess He could, but I don't bank on it.  I wonder sometimes what I would actually do if he was healed?  Would I still be an advocate? Would I still be spreading awareness to help others?  I don't know?  Most likely, but that is part of me protecting myself from higher expectations and being disappointed later.  Sometimes I seem to get frustrated with how things are not moving as fast as I want I find myself getting mad at my own child's situation for being who he is.  It is hard dealing with the meltdowns, no breaks, no vacations, the financial stress and no help on a regular basis.  I do tell myself that it could be worse and I am sure it can be. It doesn't mean I don't have an occasional pity party. 
I have to keep strong, but sometimes I really need someone to be strong for me and my family.  These past few months have been trying on my patents and nerves.  I want my little boy not to have to suffer the confusion that goes on in his brain due to seizures.  His behavior has been off the chain lately and after many visits to the neurologist we are still waiting for a more conclusive solution to his emotional meltdowns and obsessive behavior.  On the bright side, Beckett has had more verbal progress in his speech.  He is trying to say more words and simple 3 words sentences.  He knows his manners and says "hank you" and "peeese" when something is given to him or when asking for something.  I hope the new EEG results come soon and that we can find a medicine that will work better to control his seizures and behavior outbursts.

Beckett's 3rd EEG of 2014

Beckett's Kindergarten Year in Review - He's Happy

Just wanted to share a short video of Beckett and his sister Pyper's Kindergarten year.  This is Beckett's favorite song by Pharrell Williams - Happy

Hope you enjoy!

So Proud of My Bean!!

It's been a crazy few weeks.  I've been gearing up for our Houston Livestock Show and Rodeo!  I absolutely love rodeo even though it can be really tiring at times, but so worth it!  If you are ever in Houston, Texas for a visit in March, you need to put the rodeo on your bucket list of things to do before you die.  There's not an experience like it. You really have to check it out!  I am what they call a Gate Keeper.  I am the one who welcomes you to the Rodeo and takes your ticket to get in.  It's a blast and I love meeting new people from all over the world.  http://www.rodeohouston.com/

In the mean time, I have been working to collect as much data for Dr. Michaud from other parents of children with SYNGAP.  I am still trying to get in touch with the genetic doctors at Texas Children's Genetics Clinic. I am trying to get them on board with Dr. Michaud and Dr. Parker from the UK to help define SYNGAP and have it identified as an actual diagnosis for the medical DMP.  I am also super excited to have at least 7 of the families in the US that have gotten the information packet from me to send to Dr. Michaud.   I am also excited to hear about the new discoveries that Dr. Michaud and his colleagues are going to be publishing soon.   I will keep everyone posted on the developments as they arise.

Beckett Spelled His Name Out At School

On the other side of things I have been so very proud of my Bean.  Beckett's teacher at school has been helping him to spell out his name in letters.  He also has been trying hard to write his name.  Since he has been on his seizure medication he has really progressed more than I expected.  He is more aware of his surroundings and making more of an effort to communicate his needs with us.  He is learning something new everyday.  He is imitating almost everything he sees.  I am so glad we found out about his seizures.  It has made a world of difference.  Of course we still have the melt downs when he doesn't get what he wants, but I guess that's normal for a child who is at the mental age of three.  We are working on trying to be patient and having to wait for things.  I didn't realize how hard teaching that concept is.  I assume that when he matures a little more he will eventually get it. 

 



 

I AM ON A MISSION!!!

Please pass this on to any families that you may know that would benefit from this information. I have some great news!! I spoke with Dr. Michaud last night about my son's Syndrome SYNGAP1. He has ask me to help him find families of children who have been identified. He is working on defining the condition to continue his research. He is the doctor who created the test for SYNGAP1. This syndrome has children who have characteristics of developmental delays, severe language delay and many other symptoms that are mistaken for other things. Autism Spectrum Disorder symptoms and possible seizures can be seen in some of these children, ...but not all. Mostly this syndrome causes Intellectual Disability. He has ask me to invite ...families who have this diagnosis to contact him to help him define conditions caused by SYNGAP1. He has told me that once they have an official definition has been made, research can continue to the next step of starting more ...
studies in humans, since they have mouse model data. Please share this with parents you may know who have autism or unexplained symptoms to push their doctors to get genetic testing. This is huge, because most people settle for the autism diagnosis and stop there and don't push for testing. The more people out there who are identified, the more money for research, then research for possible treatments can be done. So..needless to say...I'm on a MISSION now;)

Please watch the video on SYNGAP1
http://www.youtube.com/watch?v=6NE7FgFBO_o

 Jacques L. Michaud, MD
Head, Division of Medical Genetics, CHU Sainte-Justine
Professor of Pediatrics and Biochemistry, Université de Montréal

CHU Sainte-Justine Research Center
3175 Côte Sainte-Catherine
Montréal (Québec)
Canada H3T 1C5
Phone: 514-345-4931, ext: 6900
Fax: 514-345-4766

jacques.michaud@recherche-ste-justine.qc.ca

 

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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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!