Friday, January 28, 2011

{Time to LIVE ~ LIVE ~ LIVE!!!!}

Over the last 4 years Al and I have worked opposite shifts to limit Michael’s need to be in someone else’s care. I have to say this has been really hard for all of us {Al working Mon-Fri, me working the weekends}.

It is TIME for a change, TIME for us to connect as a family. It is TIME for us to enjoy our family again.
I feel we have been doing a decent job at juggling family time and our need to work but it is taking its toll. We find ourselves feeling more like roommates and caregivers than husband and wife or Mommy and Daddy. We find ourselves feeling trapped.

Every 6 months I am faced with changing my schedule at work. This usually brings me a great deal of anxiety as I am not one for change. This shift in schedule also tends to take a toll on Michael as he also likes to have a routine.
This time it is different. This time I am looking forward to the change. I think for the first time in nearly 10 years of employment there.
With this change will come a bit of a financial decrease but the benefits far out way the lack in income.
Since Michael has been born we have only been on 1 family camping trip when he was less than a year old. We honestly have been fearful of taking him anywhere overnight as he hasn’t quite grasped the concept of an inside voice or how to behave himself in public {we are working on it believe me}.
We tend to do everything based on “is Michael going to have a melt down?” We assume he is going to have an issue because time and time again we face the evil stares from people when Michael displays his dissatisfaction in public places.

Michael has many autistic tendencies but the only way we are going to get him to learn to function in “the real world” is to go out there. Be apart of society and LIVE our lives.

No more will we live our lives for other people to make sure they are not “inconvenienced” by us. They can just deal with it. They can be as upset as they would like or give us the look of {can’t you control your child} all they want.
There are a lot of people, places and things we are missing out on.

It is our TIME to live life and set ourselves free of this prison we have created. This summer we are going to have A LOT of firsts. I can’t wait!!!!

Thursday, January 27, 2011

{Can’t wait to see His Brain}

Those of you who follow this blog may read and think man this chick is bi-polar! I am up then I am down. I think that’s life. {Isn’t it?}
I have to say that having Michael has been one of the biggest challenges and yet one of the most rewarding things I have ever done in my life. Never predictable, Never boring.

This week we went to Michael’s neurologist. He informed me that he does not need to see us any more unless Michael starts having seizures {Thank the good Lord we haven’t}.That there isn’t anything more he can do for Michael.

Hearing this from him brought me relief but it also brought a bit of sadness. My gut reaction was {woo hoo! And suddenly changed to But why?}

Relief because it is one less doctor bill for us, but, sadness because there is nothing he can do for our little Michael. Michael has what he has and there is no cure.
I have known this but I find myself sometimes holding onto the possibility of “a cure”. So when I hear things like this from his doctors I can’t help but mourn a little bit.

We can treat the symptoms of what is going on with Michael. Michael’s case is being sent over to Chris Walsh Labs at Harvard University where they study PVNH and other neurological migration defects to find out why they happen.
I can now hold onto the belief that one day they will know what causes this defect to happen and that somehow Michael was a piece of the puzzle in finding this out. {Who knows maybe one day we will read about Michael in some medical journal, maybe Michael when he grows up will be the one to figure out why this happens} You have no limits my baby boy.

So,that chapter is closed for now, a new one opens and along with it comes Michael’s MRI. I can not wait to get it so I can pop it in my PC and stare at his little brain in all its glory and wonder.
We look forward to these changes. We are embracing the moment. We are treating the symptoms and pushing forward to new things in science.

Thursday, January 13, 2011

{Silent NO More!}

Lately I have posted about a few difficult times we have been having. I write about them because it is REAL life. Life isn’t “happy” all the time, nor is it “sad” all the time.
I feel that in order to appreciate the good moments it is important to respect and acknowledge the difficult times as well.
A time for everything right?? I think Ecclesiastes 3:1-8 says it all. {Oh and the The Byrds did a great version in their song}


So with all that being said, here is a little insight on what has been going on with BOTH sides of the coin.
Michael is in a specialized pre-school class. In his class he receives physical therapy, occupational therapy, and speech therapy. We have a IFSP{Individualized Family Service Plan} in place it’s purpose is to evaluate the needs that Michael has and what needs to be done to help HIM grow to be the best he can be.
One therapy that has been a sore spot for us has been his speech therapy.
Many of you know already or may have picked up by reading previous posts that I do not tolerate much when it comes to those that are working with our son.
The IFSP is in place to not only set goal for Michael’s development but also to hold people accountable. {It is a legal and binding contract}
Last year I called a meeting with his team {those who have a plan in place please KNOW it is your RIGHT to call a meeting whenever you feel you need one!} and speech was lacking in that they were not sending me monthly updates as I had implemented in our plan. I also found out at that meeting that the referral to get Michael an Agg Comm devise was not put in as speech had been instructed to do. Needless to say while we were in the meeting it got signed and put in {this was last year}
Since then it has been one big bureaucratic mess.
Every week when I take Michael to school I am given one excuse or another as to why we are at a stand still.” We are trying to see what will work for Michael” “We are down a person” “we have are waiting on a new speech therapist” {we have had 3 people!} It has now been almost a year NEWS FLASH>> Michael understands picture recognition he isn’t lacking in the receptive side of his brain!

Finally this week I had Enough!! I send an email out to Michael’s entire team yesterday as well has the Coordinator for all of Willamette Valley ESD. Needless to say I received a call after hours last night from her as this is not the first time I have had to involve her to get a situation resolved. I will also be receiving a call from the Coordinator for speech for all of Willamette ESD.

While all of this was going on with Michael’s school, I was on the phone with someone else {they wish to remain anonymous} and they advised me that they would buy Michael an iPad that we can load the communication app onto so he can finally get assistance in verbalizing.

The purpose of the devise is not to rely on it 100% but research has shown that children with developmental disabilities such as autism, down syndrome, etc. actually start to talk more after starting to use the devise in addition to reducing the frustration while in the learning process.
I know I would be pretty upset if I could not express everything I had to say {wouldn’t you?}

So now son YOU will now have a way that you can tell us EVERYTHING that your little heart desires, ask your questions ALL of it!! This is all part of the plan for you son, the plan in developing your independence!

We had a TIME for sadness and frustration and now we get to have our TIME for joy and enlightenment!!!!





Wednesday, January 12, 2011

{Tick,Tock,Tick,Tock}


Today is a new day. Last night while I was thinking about Michaels first three word sentence “Dad Hear Heart” {over and over again}, I could not help but to forget about ALL the other events in the day and focus on this BRAND NEW step for Michael and to look back at some other bright moments we have with him.
Michael is not you average kid. He would much rather watch the History Channel, Modern Marvels, How It’s Made, or Trauma Life in the ER than cartoons. Don’t get me wrong he does like his cartoons {what kid doesn’t} but, they do not hold his attention like these do. You can physically see the information being soaked up like a sponge. The look in his eyes screams Tick, Tock, Tick, Tock.

“Heart” was actually one of the first words he said aside from “NO” {his favorite}. While he watches the medical related shows on TV he sees the heart monitor spiking up and down, Michael points to it and says “HEART” {pointing to his chest}. He draws the up and down heart monitors lines on paper and announces “Heart”.
A child his age would typically relate heart to the shape of a heart not to a heart monitor.

We believe Michael is so intelligent and inventive but, his outward body won’t let it out. Everyday he shows us new things some times it’s creepy what he comes up with {not in a bad creepy way but in a, OMG! How, did you come up with or know that?!} Way.

Michael will sit and take apart EVERY toy to see how they work {none of his toys are in tacked or used the way they are intended}. He has done this since he was about 2 years old. He is always putting two toys together to make a NEW toy, or making them relate in some way. You can see in his little eyes his mind is going Tick, Tock, Tick, Tock.

Each day, each week he is always coming up with something new. His latest obsession is {Straws}.The other day I bought him a large bag of neon colored straws {it was that or not get out of the grocery store}. Honestly I was dreading this as all I could envision was me having to pick up all 50 at the end of the evening.
To my surprise when we got them home he spilled them out onto the floor {I had to take a deep breath} and he started putting them together into parallelograms {shapes}. Again, Tick, Tock, Tick, Tock.


Life with Michael does get overwhelming but, it is these moments of creativity, genius, what ever you want to call it that make us step back and realize that. There is a REASON why our little man defied the odds to come into this world {we were told he should not have made it due to the complications I had during the pregnancy}.

Son, you have a beautiful, creative, smart mind. I can’t wait for it all to be revealed!

Tick, Tock, Tick, Tock, Tick, Tock, Tick, Tock, Tick, Tock

Tuesday, January 11, 2011

{Dark Places}

Today was a very difficult day for me. Michael is sick and when Michael is sick it is like Linda Blair moves in and takes over. The self inflicting injury, the constant screaming, throwing him self backwards. Really it is like it is not my little boy in these moments

About the first 3-4 hours things are manageable but long about the 4th hour. You can’t take it any more! You just want to scream {STOP!}.
Now the first hour starts at about 4:45 am so about 8:45 am I am trying to get him to settle down and take a nap. Not today. Today he wanted to do everything mentioned above and soo much more.

I finally got Michael to go to sleep at about 12:30pm. I fell asleep to.
Normally I will stay awake as it is my only time to have a conscious, quiet moment to myself {and I want to be awake to enjoy it and or to allow myself to process the overwhelming feelings}.
I woke up an hour and a half later to Michael screaming PANTS! I get up and the time it takes me to grab a diaper and wipes I must have heard him scream PANTS! 10 times. Believe me I have a sense of urgency when it comes to Michael but I could not seem to move fast enough.

It is these moments that I have to even quicker than I got the diaper, go outside because my mind starts to go to {dark places}. I start to cry and become so utterly down on myself for even thinking them.

I wish I could say that the afternoon improved after the nap but it just got increasingly worse. I am careful with my tone and my body language because Michael is smart he knows when mom is at her breaking point and even when I do watch those things he still knows.
I found myself scrolling through my phonebook on my phone wondering who I could call. Who would be willing to come {HELP} me? Instead I found myself in the fetal position on the couch balling like a baby.

Thankfully the good Lord above obviously saw my dilemma and Al came home at 5 rather than 6. Being the good husband that he is he didn’t waste time asking stupid questions. He just went into action.
We needed some things from the grocery store, so Al bundled Michael up and took him to go get the items so I could get into the bath{sorry folks at the grocery for my son hacking and coughing all over you, you should be sick in about 48-72 hours}

I without delay started up the bath and got in it while it was filling up..All of a sudden there was just as much water coming out of my eyes as there was in the tub. I am starting to go back to the dark places again. All the pressures of Michael and worries about work start to take over.
My mind starts to think, I could just lie down in here under the water, would it hurt? Would it be fast? I hate it when those thoughts come into my mind. I can tell you I would never act on them as I do value my life, my son, my husband, and my daughter. It just gets exhausting at times.
Suddenly and oddly enough just as the thoughts came in they go out and my mind is then filled with the song {I will survive} I know the content of the song does not apply but I can’t always control the things that come in and out of this crazy head of mine.

So now Here I sit, typing away letting it all out while Michael is being occupied by Daddy and dinner is in the oven. Soon, very soon in about an hour to be exact it will be bed time for Michael. It is our time to talk about the day and to finish crying it out.

Do you ever go to the dark places? What do you do when you are in them? Do you talk to people, cry, pray, take medication?
Don’t say you have never been there because I am going to step out and say I am pretty sure everyone has had a moment or two in their life.

Friday, January 7, 2011

{Boy in a Bubble}


Recently I have had the need to change daycare providers for Michael. I can’t tell you how much anxiety this causes us ALL but especially me.
Being a mother to a child that can not yet fully express the things that happen through the day is very worrisome. We are forced into a position where we have to trust another person with our precious Michael. When in my mind I start to think {what if they poison his food, what if they take off with him to another state, what if, what if, what if}
We do all we can to make sure it is a safe, clean, structured environment. We run national background checks {have to make sure we cover it all}, and do everything aside from full on interrogation {with water boarding}.

When I am faced with situations like this it takes me back to the night we brought Michael home. Just 24 hours after giving birth to him, we came home and life was good, then all of a sudden while I was lying on our bed I started to cry like nothing before. Al came in, lay next to me, and asked why I was crying. All I could say is “I didn’t think I would be so sad with him on the outside. I want to keep him inside by belly forever so I can protect him.”
As time goes by I am able to see just how over-protective I am. Sometimes, to Michael’s disadvantage.
I puréed his food until he was a year and a half for fear he would choke. I would think {he has a tiny throat, the food is going to get stuck and then I have to do CPR!} To this day I have to sometimes get up from the table and go to another room because the fear is still there. Thank God Daddy is brave and can be my strength.

When we are in the store or in public places if I even remotely hear someone cough or sneeze we quickly redirect our path to avoid them. In my mind {they might have H1N1, The Bird Flue, or some other God forsaken air born disease}

Then there is the school bus, Oh the bus…What a huge thing that was. The very thought of my little 3 year old being lifted into a bus to go to school terrified me. Even though we knew it was important for his development I had a very hard time with it. Again my mind starts to run away with me {What if the driver is a child abuser? Then I would have to kill him, Michael would have to visit me in prison, I don’t look good in orange, What if they drop him off at the wrong place? What if they get in an accident? What if a train hits them on the tracks? }

The list is long, so long that this particular subject has the potential of becoming a very lengthy novel.

Over time I have learned to suppress these fears of mine but, every once in a while they rear their ugly little heads and I find myself laying on my bed again that night we brought Michael home, wishing he was still in my belly.
Having a child that has special needs, I have more of a responsibility to make sure I do not over-protect him. It is our job to make sure he can be independent and self sufficient. I have to put myself in uncomfortable situations to make sure he is able to experience life the way it is intended. So he can learn and grow.

So, today as I have to take it one day at a time, I will tell the over-protective mom to have a seat, as we have some living to do without her fearfully nagging in my ear.

Wednesday, January 5, 2011

{ I Love Pancakes! }

Three years ago we started our journey to find out why our little Michael was not hitting his milestones. Why he was not even responding to sounds, giggling, or looking in our direction when his name was called {utter sadness}. During that time we were told by a pediatric developmental specialist {world renown} that Michael would most likely not ever speak.

Let’s fast forward to present day.
Lately I find myself in amazement over the efforts our little man puts forth in communicating. Behavior issues {atrocious} aside, he is now mimicking the sounds we make. I love that I can carry on a conversation with him. To hear him tell me that he wants to eat, or hear him sing his "ance,ance,ance”{dance} song while he starts dancing in his own little way makes my heart smile.

Not all the words are clear but the sounds are so incredibly close we still know what he is saying and THAT is a great accomplishment on HIS part.
Needless to say, I can now go back to the neurologist that told us to talk to Michael in BABY talk “so he would understand us” and tell him he was WRONG. No! I will not talk to our son like he is less than intelligent. I will talk to my son like I do anyone else in the world. As time goes by the sounds become more streamline and form the actual word.

In addition to words he is now starting to verbally express emotion. No, not just in the screaming when he is throwing a temper tantrum. But, actual feelings!
I made Michael some fruit laden pancakes the other day {fruit hidden of course} when, all of a sudden Mike said to me “Mom” to get my attention, then he pointed to and said “takes”{pancakes} then pointed to his chest and said “heart”{which is clearly heart}. I repeat words back to him when he says them. This time was different, this time he kept repeating “takes heart” he must have said it like 6 times. I stopped, looked at him and said “Why do you keep saying“takes heart?”
Thank God daddy was there because he had the utter epiphany. He said “Mike you LOVE PANCAKES?” Michael’s eyes lit up so bright {bigger than life}, he got a huge smile and said “yes”. He then stopped repeating the words because we got it! Michael let us know He loves the pancakes!! This was followed {of course} by a lot of praise, clapping and doing the silly dance to celebrate this new breakthrough.

These events make it all worth it for me. All the days I have felt like I have played one big game of charades, have spent the day telling him what things are a gazillion times when he asks “what’s that”. I am able to sit back and be so very proud of our little man for not giving up, and being so patient {mostly} with us while we teach him new words or try to figure out what he is telling us.

I will never tire of hearing your little voice our little Michael. It is music to my ears.

Saturday, January 1, 2011

{Inside Me, Why I love}


This is me wide open, it explains a lot about the person I am today. This is why I love the people in my life today more than words can describe. I value relationships {true relationships} as they are very precious gifts not to be taken for granted.

That being said….Let’s start from the beginning; my mother married a man when I was 10, when they married he looked me in the eyes and told me "I already raised 3 kids of my own I don't want to do it again".
I was 13 years old when my parents had heard of this "boarding school" for girls from some of their friends at church. At this point in my life I was mouthy and failing in school but I had not yet done drugs etc... The worst I had done at that time was to sneak out and toilet paper a friend's house. My mother's husband was very verbally abusive; she told me she was sending me there to save me from a horrible life with him. According to my mother divorce was not an option that she wanted to do again in her life. I went shopping with my mother for new clothes that would be suitable for the school as I was still under the impression that it was your typical boarding school that you would see in the movies.
When we pulled up the dirt road to the school I was ok until I saw what seemed to be a 50 foot tall chain-link fence with barbed wire on the top and a very large gate that automatically opened for us to drive through. We were met in the entry by the staff along with a couple of other girls. They allowed me to say my good byes to my mother, it was a very tearful one as up until I was 10 it was just me and my mother. She was my life.
They whisked me back to this institutional like bathroom filled with a horrible sterile smell, told me to get undressed, take a shower and wash with lice soap. I was a basket case. I had been on anti-depressants and I was told I would no longer need them so they just abruptly took me off my medication {I found out as an adult this could have caused adverse side effects}. I was put on buddy{the only person I was allowed to talk to, and had to walk behind at all times} and did not like the girl I was paired up with nor did I like anyone there as I was your typical teenager who did not like being told what to do. I also had a pretty severe issue with lying. It seemed I would lie before I could even think about the truth. These behaviors led to some horrible events in my life.
I was placed in the GR{get right room}.This room had plywood walls, industrial office carpet, 1 small light in the ceiling, and an industrial lock with a peep hole on the outside of the door. I was in there for several days on several occasions.
My food was brought to me, I had to listen to fear based Preaching tapes, and I was allowed only to leave the room to take a shower.
When I was not in GR, I was sitting in the corner writing sentences all day and was not allowed to go to school while in the corner. I wrote sentences in the corner, ate in the corner, and the only time I was allowed to come out was when it was time for chapel or bed.
At one point I was made to stand all day in the dinning hall with my nose to the pole while the entire school and staff went on with their day as usual.
We were made to write the book of James if someone said “oh my gosh”. We had huge dorm searches where girls under things would be put on display. If a torn fingernail was found on the floor they would round us all into the dorm until someone would confess and if they didn't we would all pay the consequence.
We had to endure an activity called sheep and goats. They would label each girl either a sheep or goat. Goats got nothing but to go back to the dorm and have quiet time while the sheep got to have a party.
I was called a “puke”, a “liar” and several other things I have managed to block from my memory.
I wrote letters to my mother that never made it to her as I was told I was trying to manipulate her. I finally got to see my mother after the first 30 days, all I could do was cry. I tried to tell her what was going on but she was being manipulated by the staff with their fake concern, fake smiles, and were so nice to me while she was there.
I finally got smart and "got saved" several times in fact, as that seemed to be the only way I could get a second chance around there.
Life in hell went on and it was pretty much one tumultuous event after another. In 1989 my time was over, my mother took me home and I was enrolled in a Private Christian high school. I was out for 7 months. I did start to behave worse than before and sneak out of the house more and more. Finally, my parents said “Let’s go visit Victory”. Me being so utterly stupid agreed, not that it would have mattered if I opposed.
We went on a Sunday, I sat through Church service with my parents and immediately after the service we were greeted by the staff at which point we were invited to stay for lunch. Needless to say once the girls left the chapel, the staff and my parents took me into a room and told me I was not leaving.
My heart sunk. I remember waking up the next morning, looking at the cinderblock walls painted blue, crying, thinking “Oh my God I am here again.”
This time I had learned how to play the game from my previous stay. So no GR or corners for me this time. However one early morning not to long after I had arrived maybe about 2 or 3 months, I was told to get my things together, get dressed, that my mother was on her way to go on a plane with me to Florida. I was actually excited as I hated the walls of the Ramona school. My mother and I flew to Florida . When we got to the airport in Florida and we were greeted by the staff. We were taken to the {Jay, Fl} school, it was this huge house almost mansion like. It was a totally different world as there were only 3 other girls there besides myself. We ate at a normal dinning table in the kitchen and got to have seconds. We went to this little church in town ran by Brother Jimmy who seemed to spit saliva every time he preached. They had a horrible choir; the song "Turn the radio on" still is remembered. We did our school work, worked out in the yard, took trips on the tractor, chased snakes around the property and chopped of their heads. Life was what seemed to be better there.
Still the indoctrination continued and we were still basically told that women were the lesser of the human species.
While there I received a phone call from my mother and she told me that her and my step-father were getting a divorce. “Right On!” I thought as I was under the impression that would mean I was coming home. Oh how life had another plan entirely for me.
My mother who was manipulated by the staff decided that it would be a good idea for her to work at the Ramona school so she packed up all her belongings and moved there. She made 300.00 a month to run the kitchen. The difference between my mother and most of the other staff is she genuinely loved the girls. She thought she was doing what God wanted her to do. Once my “time” was done in Florida I was put on a plane only to return to Ramona to live. Not as a girl in the school, but, a “staff kid”. This was different. I hung out with the owner’s daughter and her husband, was taught how to drive in the staff vehicles, and would sneak into the walk in refrigerator with my mom in the middle of the night to eat left over desert. After a few months the Ramona school was officially closed by the state of California. My mother and I stayed at the school until the last girl was either transferred to Florida or went home with their parents. Once closed it was desolate no one was there but my mother and myself. Oh how eerie the place was and so full of residual negative energy.
My mother and I packed up our van and drove cross country to the Florida school where she and I lived for the first few months in a 20' travel trailer. I would go to school but would hang out with the girls most of the time.
In 1991 my life took yet another unexpected turn. My mother told me one night that she had received a phone call from my step-father; he was going to be in Louisiana and wanted her to go there to meet him for the weekend. I begged my mother not to go as I knew how utterly manipulative he was, a real womanizer. I told her before she left that I knew if she went that she was going to get back together with him. She assured me this would not happen. So off she went, she came back and told me what I knew was going to happen all along. She was getting back together with him! I was upset as I never developed a good relationship with him. I never thought for a minute that I would be placed back in the school as a girl in the program. Unfortunately that is what happened.
My mother got married at the Florida school; I was then placed back in as a girl in the program while my mother and step-father left to go live their lives.
I was told I could leave when I finished high school. When I was placed back in the school I sometimes think that Mrs. P felt sorry for me because she would allow me to go on the weekly all day shopping trips. I was able to go spend the night at the staff's houses ,and use the phone when I wanted with in reason.
I finished my paces {school workbooks} early, a year earlier than I should have because I wanted to get out. All I wanted to do was to be with my mother.
My mother paid for and reserved my dorm room at Pensacola Christian College as that is where I was to go after high school however, I had different plans. My mother and step-father came for my graduation and they took me cross country to go to their new home in Oregon for the summer until school started. Once we got to the West Coast I told my mother I did not want to go back to Florida. I was finally 18 and they could no longer dictate to me where I was to be.
I enrolled in the local community college in Oregon but all of a sudden I discovered men, drugs and all the things that I had been previously accused of by the school but had not yet ever done.
My life has gone from being very hurtful and challenging to at the present time, very rewarding, meaningful, and love filled. I am going to be 37 years old. I am married {almost 11 years} to THE most understanding, loving, patient man. I have a beautiful 14 year old daughter , and a very challenging 4 year old little boy.
Do I say all of this to feel sorry for myself, NO, I say all this because..Had I not exsperienced this portion of my life I would not now KNOW what true love and trust is today.
For those of you in my life who I have ever told {I LOVE YOU} to..KNOW that I mean it.