4 More sleeps OH MY…

Its been a very hectic few weeks in our house, I had to work this week and am thankful for the snow day we have today, lol.. I am not used to working full days and my poor body  is thankful for the break today.

Christmas is approaching fast, I can’t believe we are only 4 sleeps away. crazy how this year has gone by so very fast.  The nice part is that I dont have to worry about anymore appointment till the new year..YAHH. It’s a nice break for us, BUT my calendar is filling up already with LOTS off appointments, I have to go for some more tests to see whats going on with my bladder, and to see someone about this cyst I finally got the appointment 🙂

But with Christmas coming our house is full of so much ANXIETY.  I LOVE Christmas, but the anxiety the kids have is so awful, I feel so bad for them, poor Tyler has not been able to sleep he is just so excited.  Behaviours are coming out as they are just so excited.

But I want to take a moment and say although we are going through stuff at this time of year, I can’t begin to imagine how the parents and families are going through from the shooting in CT.  So sad, awful for something like this to happen.  This Christmas lets take the time and think about all these people and the loss they have had, I am going to leave you with a poem someone sent me.

No one can make sense of all this, I received this in an e-mail and had to share 🙂

Twas’ 11 days before Christmas, around 9:38
when 20 beautiful children stormed through heaven’s gate.

Their smiles were contagious, their laughter filled the air.
They could hardly believe all the beauty they saw there.

They were filled with such joy, they didn’t know what to say.
They remembered nothing of what had happened earlier that day.

“Where are we?” asked a little girl, as quiet as a mouse.
“This is heaven.” declared a small boy. “We’re spending Christmas at God’s house.”

When what to their wondering eyes did appear,
but Jesus, their savior, the children gathered near.

He looked at them and smiled, and they smiled just the same.
Then He opened His arms and He called them by name.

And in that moment was joy, that only heaven can bring,
those children all flew into the arms of their King.

And as they lingered in the warmth of His embrace,
one small girl turned and looked at Jesus’ face.

And as if He could read all the questions she had
He gently whispered to her, “I’ll take care of mom and dad.”

Then He looked down on earth, the world far below
He saw all of the hurt, the sorrow, and woe.

Then He closed His eyes and He outstretched His hand,
“Let My power and presence re-enter this land!”

“May this country be delivered from the hands of fools”
“I’m taking back my nation. I’m taking back my schools!”

Then He and the children stood up without a sound.
“Come now my children, let me show you around.”

Excitement filled the space, some skipped and some ran.
All displaying enthusiasm that only a small child can.

And i heard Him proclaim as He walked out of sight,
“In the midst of this darkness, I AM STILL THE LIGHT.”

Written by a Gentleman in Southern PA

Meetings, Appointments OH MY

I have been dealing with so much lately and I tell you its starting to catch up, since September its been like a roller coaster ride.  My youngest was admitted into the hospital for a week, as he had a psychotic episode, I tried to quit smoking, and well that did not work out so well, dealing with the school, behavior problems with Travis, a new school year, the big assessment for the Twins, meeting for Brandon to figure out what is going on, dealing with Brandon calling me almost everyday with some excuse as he does not want to be in school, then I have been having some health issues of my own, I had a bladder suspension done, then a hysterectomy about a year after that as I had ALOT of issues, and not well something is not right with the bladder suspension, they found out I have one kidney bigger than the other, and a HUGE cyst on my right ovary.. GOD it never ends.  Yesterday I had an appointment with my counselor as things have been hitting home, and well I went out to start the truck (which I will tell you is a piece of JUNK) and it would not start, Barry had the van as he had stuff to do up North…..WELL that was the icing on the cake for me and I just broke down, I ended up having an over the phone with my councilor, thank god, she is so awesome.  I cried,  I vented,  I told all, she listened and was very helpful.  I need to take more time for myself, I know that, lately its been so hard to find the time.  I have been missing so many people who are in my life right now, my Mom who passed away of cancer 2 years ago, my Dad, my sister, my nieces, my Mother in Law.. the whole family.  Yes I talk to them everyday but it’s not the same, I just wish to be able to hug them and someone to tell me that everything is going to be alright, like my Mom use to do 🙁  I am strong but comes a time when you break and I guess I am at that point now.  I know it will get better and I hope it is soon.  I just want to figure out whats going on with Brandon and hope we can get him all leveled out so life will be less stressful.

So today I go and see the Doctor about my bladder and kidney issues, I have been calling him the Pee Pee Dr.. LOL.. Just seems like lately every time I turn around there is something else to add to the list.. and its a LONG list. I know there is light at the end of the tunnel and I will get there soon, just wish it was now.. and the Anxiety has started for Christmas, the boys Anxiety is HIGH at this time of the year and I don’t look forward to it at all.  I love Christmas, but it’s so much for the kids, the anxiety, we cant go anywhere as they just could not handle it, it sucks but we have gotten use to it, they are better in their own surrounding at this time of year as we want to avoid the melt downs, the temper tantrums, etc.

So this is my day today, Christmas shopping and seeing the pee pee Dr. and hope to GOD I don’t have to have more surgery,  we shall see, but I am afraid that is what will be happening.

Have an awesome day everyone xo

All about our life :) I am putting it out there :)

I am going to put it out there so that when you read my blogs you will understand.  We are a family of 5,  I married my high school sweetheart :).  We got married young at the age of 19, we have 3 beautiful boys all with special needs.  My goal and hope is through my own experience is that I might help people who are going through similar issues.  I will tell you here what my children have been diagnosed with so you can understand my blogging LOL.  These diagnosis does not DEFINED who my children really are, but with them you can understand more, our boys are bright, loving, caring, polite, helpful,  intelligent, funny, they are AWESOME kids 🙂 ❤❥ all they want is ACCEPTANCE, to have friends, to be loved for who they are, not what they have, not pity, UNDERSTANDING.

Ok so our twins Tyler and Travis were born premature, they have been diagnosed with, Autism, Behavior,  Intellectual disability, ADHD, OCD, ODD, Anxiety, mixed Expressive receptive language disorder, sensory overload visually,  and just Travis with generalized seizure disorder along with the other one I have listed, I think that all, now I will give you an explanation for all these LOL.

Autism : Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior.  Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger syndrome, and childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS).  Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group.  Experts estimate that 1 out of 88 children age 8 will have an ASD (Centers for Disease Control and Prevention: Morbidity and Mortality Weekly Report, March 30, 2012).  Males are four times more likely to have an ASD than females.

Intellectual Disability : An intellectual disability (also commonly referred to as a developmental disability among other terms) is, simply stated, a disability that significantly affects one’s ability to learn and use information. It is a disability that is present during childhood and continues throughout one’s life. A person who has an intellectual disability is capable of participating effectively in all aspects of daily life, but sometimes requires more assistance than others in learning a task, adapting to changes in tasks and routines, and addressing the many barriers to participation that result from the complexity of our society.

ADHD: (Attention deficit hyperactivity disorder) is a problem with inattentiveness, over-activity, impulsivity, or a combination. For these problems to be diagnosed as ADHD, they must be out of the normal range for a child’s age and development.

OCD: (Obsessive-Compulsive Disorder)  is an anxiety disorder that is associated with obsessions and compulsions.  Which is part of Autism.

ODD: (Oppositional Defiant Disorder) ok this one made me laugh as I thought all children where defiant but there is actually a disorder for it, here are the signs of it,

  1. Temper-tantrums, even over small disagreements, very upset when they don’t get their own way.
  2. Argues with adults, especially with those in authority.
  3. Defies or deliberately refuses to follow rules or directions given by adults.
  4. Deliberately annoys people, continues a behavior after being asked to stop several times (e.g., touching things, saying something, making sounds, etc.).
  5. Blames others for his or her mistakes or misbehavior.
  6. Seems touchy or easily annoyed by others.
  7. Seems angry and resentful much of the time, walks around with a “sour-puss” much of the time.
  8. Often wants to “even the score” with others, is spiteful toward others.

Mixed Expressive Receptive Language Disorder: Mixed receptive-expressive language disorder is diagnosed when a child has problems expressing him-or herself using spoken language, and also has problems understanding what people say to him or her.

Sensory Over Load : is also known as sensory overstimulation; it occurs when sensory experiences from the environment are too great for an individual’s nervous system to successfully process or make meaning from the sensory experience. A common example of this is a carnival/fair including the smell of barn animals and food, sound of other screaming children, amusement rides, and buzzers from games, car engines revving, touch stimuli from bumping into people within a crowd, the visual input of fast paced movement including blinking lights, fast-moving rides, people and cars etc. In this example there is an abundance of sensory experiences entering the carnival goers nervous system all at once, which commonly leads to shut down, tantrums, or other negative behaviors that are associated by an overwhelmed nervous system (or sensory overload) that can not efficiently process the smell, sound, taste, touch, sight, and movement of the environment all at once.  There are many symptoms that occur when a child or adult is suffering from sensory overload and they include the following :• Tantrums for no apparent reason.

• Irritability.

• “Shutting down” refusing to participate in activities or interact with others.

• Avoids touching or being touched by objects and people.

• Gets over excited with too much to look at.

• Covers eyes around bright light.

• Has poor eye contact.

• Covers ears to close out sounds or voices. Complains about noises, such as vacuum cleaners, that do not bother others.

• Inability to focus on an activity.

• Jumps from one activity to another, never fully being able to complete a task

• Irritation from shoes, socks, tags, or different textures

• Over-sensitivity to touch, movement, sights, or sounds

• Difficulty with social interactions.

• Unusually high or low activity level.

Ok know if your still with me that is just for our twins our youngest Brandon who is 15 years old, has been diagnosed with, Intellectual Disability, Anxiety Disorder, Mixed Receptive Expressive Language Disorder, Major Depressive Disorder,  Psychosis NOS (not other wise specified)  this is a new one he was just diagnosed with, we are still going through testing with him to find out the underlying causes to behaviors, and other things that have been going on with him.  Below I have copied a definition to this as we are still learning and really will always be.

Psychosis NOS:  is a symptom or feature of mental illness typically characterized by radical changes in personality, impaired functioning, and a distorted or nonexistent sense of objective reality. suffering from psychosis have impaired reality testing; that is, they are unable to distinguish personal subjective experience from the reality of the external world. They experience hallucinations and/or delusions that they believe are real, and may behave and communicate in an inappropriate and incoherent fashion. Psychosis may appear as a symptom of a number of mental disorders, including mood and personality disorders. It is also the defining feature of schizophrenia, schizophreniform disorder, schizoaffective disorder delusional disorder, and the psychotic disorders (i.e., brief psychotic disorder, shared psychotic disorder, psychotic disorder due to a general medical condition, and substance-induced psychotic disorder).

So this is it in definition and in a nut shell, our life with our children is very busy, full of appointments, assessments, meetings, etc. We will always be learning, always be looking after our children until we can no longer do so.  That is down the road but then we will have to look into placing them in a good organization, but until that time, we will keep fighting the fight for them, in our eyes they are our children and we don’t have to heart to place them in a home, they may be 18 BUT they have a mind of a 7-8 year old, its like giving up your child and we cant do it. Yes its exhausting, yes it get frustrating, but the frustration comes from getting our voices heard in order to help these children live the most normal life they can.  We try our best with the services we have, the funding is small, we need a break, we need help, but we also need money to do so.

And about myself, I suffer from Fibromyalgia, osteoarthritis, herniated disks, Depression, spinal stenosis… to sum that all up CHRONIC PAIN 😛 BUT I keep going as my children NEED ME.

So in close in all this I can say, I UNDERSTAND, if you are going through all this, please realize you are not alone in the battle, family’s who are dealing with this, it’s a daily struggle and I get it as I am there as well.  If you need someone to talk to I have an ear to listen, I know what its like to feel alone, the feeling that you are dealing with it all , but you’re not 🙂 I will listen, I will give advice, I will let you rant and just listen as you need to do that sometimes, god knows I have 🙂  I am by no means a professional in all these areas BUT I have the experience with my own and sometimes that what you need, understanding and acceptance with what you are dealing with.

So if I don’t blog everyday, it’s because I am spent and don’t have the energy, or the kids are home, or I am on the phone dealing with agencies, the school, etc.  BUT I am always here and I pray for those who are suffering through life no matter what illness they have or what they are dealing with, that there is light at the end of the road, keep trucking along and soon you will be in that light 🙂 xoxoxo

❤❥Have a wonderful day Everyone ❤❥

 

Its been awhile

Good Morning,

Its been awhile since my last blog, with the last assessment we did it really took a toll on me. Dealing with that and our youngest somedays it a challenge, and you need to just step away and recharge yourself.  I find that sometimes as the boys get older it’s the reality that sets in.  You go about everyday life and do what you need to, to survive it.  I have never done an assessment like this one.  When the kids are 21 they will be done school as they can stay till that age.  This assessment we did was very long. 2 days.. my god we where beat, they look at EVERYTHING, and how it works out is that there is supposed to be money attached to the support they need in order to function a somewhat normal life of a 21 yr old.  We never realized that they need 24 hour care, you just do it.  When we were done one the lady looked at me and said, this is only for one child who needs 24 hour care and you have 3 that need it.  my response to her was, no wonder why I am always tired.. ..

So here i will continue the story of the birth of the twins,  looking back my poor husband must have been a wreak, after they were born I lost consciousness,  I was so sick, the boys were so per-mature, the doctors told my husband that the next 24 hrs were very critical  as my body was full of toxic crap from the illness and the boys were fighting to survive.  I was out for 3 days, as my poor body was fighting. On the 4th day, I was well enough to go see the boys, Barry wheeled me down in a chair and well as far as I was concerned, if you didn’t look at all the tubs, and wires these boys were perfect, small but perfect. We could not hold them, but we could put our hand into the little hole in the incubator to touch them.  I am going to attach a video link to a video I made of them a few years back, there are pictures in their of how small they were.  I wont go into much detail as for 2 months it was trucking back and forth to the hospital, a move to a closer hospital as they needed to grow and gain strength to be able to come home.  So for 2 months it was living in the hospital and just praying they would grown and get stronger.  We had set backs, as was normal, living day-to-day worrying, wondering.  I had post pardom stress and looking back that was a given with all that had happens and was happening.

They were put on a ventilator when they were first-born as their lungs where not mature enough to be able to breathe on their own, they were ventilated for about 4 days when they came off but still had oxygen to help them get what they needed, the tubes, medication, and monitors were so scary at first but you get use to it all as this is what is needed for them to survive.  There where many other babies in the neonatal unit at St. Josephs health centre in London Ontario.  The had apnea bradycardia spells, which is normal in premature babies, what that is, is that their brains can not do 2 things at once and they actually stop breathing, they forget to breath, its scary as it very fatal.  My first visit on my own one of the boys did that and the nurse gently rocked him and it took her a few seconds, but for me felt like forever, and he started to breath again, no one at the time explained this to me and let just say scared the living you know what out of me, they then told me that had to shave Tyler’s head in order to put in an IV, I was so upset I left the unit and went back to my room and cried my eyes out, at that time it was the lack of understanding of what was happening.  I was sitting there crying and my nurse came in looked at me and said OMG whats wrong, I told her everything and she hugged me and then explained it all to me, she was such a wonderful person to take the time with me.

They had lost weight as wich was normal, they went down to 2 lbs 6 oz and 2lbs 7oz.  They continued to be on many medications and oxygen for a long time. CCF04122012_00009

CCF04122012_00008

Here is pictures of the boys, then and now 🙂 Tyler is the first and Travis the second.

Tyler was born with a grad 1 bleed on the brain which resolved itself a grade bleed on the brain is a Intraventricular hemorrhage (IVH) of the newborn is bleeding into the fluid-filled areas (ventricles) inside the brain. Thank goodness it was only a grade 1 as the higher the grade the more severity there is.  IVH falls into four groups, called grades. The higher the grade, the more severe the bleeding.

Grades 1 and 2 involve a small amount of bleeding and do not usually cause long-term problems.

Grades 3 and 4 involve more severe bleeding, which presses on or leaks into brain tissue. Blood clots can form and block the flow of cerebrospinal fluid, leading to increased fluid in the brain (hydrocephalus).

It was a very tough time for them and us, we could not hold them as they were to fragile, they had a feeding tubes, medication, there where wires and tubes ever where, all we could do was hope and pray that they would make it.  I order to see them we had to wash very well, put gown, cover our feet, and makes on, visitors where limited, we could only touch them through the hole in the incubator, it is a device used to care for premature babies in a neonatal intensive-care unit.  So our life was busy, Barry had to go back to work and I stayed with my Sister in London so I was close to the boys, I lived in the hospital, all I could do was sit there and look at the boys and hope and pray they would make it.

Thats all for today fokes as I am drained, it so much to remember as it all happened 18 years ago, but I will say I remember it all like it was yesterday.  Wishing everyone a great day and thanks for reading.