The Special Mom's World

My Favorite Team

2012-09-21T08:12:00.001-07:00

Josh was wearing a 1p36 deletion syndrome shirt the other day and a nurse asked me why in the world would I advertise his disability.

I understood that she meant no disrespect. She looks at a child with a disability and sees something tragic. She doesn't realize that when I look at Josh I see Josh not a disability.

My first response naturally is to bring support and awareness to his disability. I started to think about that answer. Well duh, I obviously want to bring awareness, but 1p is so much more to us.

1p36 deletion syndrome means family. It means support and comfort. 1p represents strength, accomplishment, miracles, beauty, inspiration, and so much more. How in the world do you explain that to someone who doesn't understand this amazing "special needs" world?

I looked at her and explained, well, it is kind of like rooting for your favorite sports team. You are proud to represent your team by wearing their clothing, watching them on television, going to the games, and cheering with thousands more fans just like you. You love your team. You will support them through the good and bad seasons. Well, that is kind of like our 1p family. We are a big team and we love and support one another."

I am not sure I cleared it up for her, but I thought it was a good analogy.

I don't know what I would do without the support of my "special" family. Josh recently had spinal surgery, (for those who don't know) the outpouring of love I received from our group was amazing. We received well wishes and support by friends and family, but nothing like our 1p group. They understand. The funny thing was I received calls and messages from concerned 1p parents, because of my fb posts. Even though I tried to stay positive many of my 1p parents saw straight through that. They recognized that I was barely holding on and they were there to lift me up.

I never wish for anyone to have to experience a disability. However.....if you do. Embrace it. Every day I get to personally witness a miracle. I was told Josh would never be aware of his surroundings. Josh's last test at therapy showed that he understands what a 6 to 8 year old child understands. That was last year so in some areas he was a year off. That in itself is a miracle. I also get to hear and see miracles from other special needs families. It may not be what we signed up for, but I am so glad to know these amazing people. I feel so blessed to be able to see people with disabilities so much clearer now.

As a former cheerleader I will end in a cheer.

A - W - E - S - O - M - E

Awesome Awesome

AWESOME Are We

WooHoo! Let's go 1p! Now let's pretend I can still do a fabulous jump. lol

A Million Times Over

2012-07-18T21:08:00.002-07:00

A Million Times Over

By Michelle Finn

I have known love forever. First with Randy Toothmen in second grade. I showed him love by calling him cavity creep and running away. Second with Brett Berry in sixth grade. I would call him on the phone and giggle, but I never had the courage to talk to him at school. Third with Dalton Britner in high school. I believed him to be my greatest love. We dated through high school and into college; a lifetime at that age. After Dalton there were many other loves that I thought I could never live without.

It wasn’t until 2002 that I discovered the true meaning and feeling of real love. I was in the operating room undergoing an emergency C-section, waiting for the doctor to hold up my new baby, and announce it’s a boy. What I actually heard was “he’s not breathing.” In that moment my entire world cracked. It seemed like hours before I heard him make a sound. Though in reality it was less than two minutes. The nurse finally brought him to me. He was already swaddled in a blanket with a hospital cap on. If Stefanie Meyer would have written Twilight already I would have named him Edward. He had pale skin, black eyes, and was beautiful perfection. Actually I call him bug. It just slipped out one day and it stuck. His real name is Josh.

Josh was finally released from the hospital nursery at three days old. I noticed something odd when I finally had him to myself. He would shake and afterward pass out. I questioned my doctor, his doctor, and probably the entire nursing staff who all replied “It is normal.” Over the next three weeks the shaking turned to convulsions and after he would be unconscious for hours. Josh’s doctor still tried to convince me this was normal infant behavior. I decided to take my beautiful boy to the emergency room. As we pulled up the convulsions started again. His father dropped us at the front door while I ran frantically into the ER shouting “My three week old is having a seizure.” What I thought was my greatest fear was soon confirmed. Indeed, my three week old son was having a seizure.

Hours later we were being air lifted to a hospital in Baltimore. The seizures continued and my fears escalated. The doctor told me to hope for the MRI and genetic testing to come back normal; they were the only two tests that I had to fear. The tests all started to come back negative, negative, and negative. This was a good sign. The MRI however did not come back the way I had expected. My beautiful boy had brain damage.

Josh was released from the hospital a week later. I was to give him Phenobarbital twice a day to stop the seizures. My heart broke for my boy. I hated to give him such a strong medicine, but I hated the seizures more. One week after we came home I received a call from the geneticist office telling me the results of his tests had finally come in. The nurse, Carmilla wouldn’t give me any information over the phone, but wanted to see my husband and me the next day. I pleaded with her to tell me something. Her response was “He should live a normal lifespan. His hearing and vision should be okay,” “ But what does that mean?” I asked. She responded “ We will see you tomorrow,”

I was sick to my stomach as I packed the diaper bag for our almost two hour journey to Baltimore. The only thing that I believed was after this appointment our lives would never be the same. The nurse ushered us into the examining room, and the doctor followed. Carmilla weighed Josh and measured almost every part of his body, while the doctor took pictures. My husband and I sat in confused shock wondering what was happening. I finally turned to the doctor and said “ What is wrong with him?” He pulled out a black and white drawing of a chromosome with the top of the drawing highlighted yellow. I suddenly wished I had paid more attention to college biology. Pointing to the highlighted area he said “ Your son is missing this. He has what is called 1p36 deletion syndrome.” “What does that mean?” I asked. His response “He has severe mental retardation. He will never know you. He will never be able to do anything for himself. You had a better chance of being struck by lightning twice than having a child with this disability.” I held my precious son tighter and adamantly disagreed: Josh already knew me. I believed he was disabled, but I did not believe he would never understand or not be capable of anything. The doctor did not join in my optimism.

The first year with Josh went by like a whirlwind. We had what seemed like nonstop doctors’ appointments and therapy sessions. When Josh was only two months old he was already involved in physical, occupational, cognitive, and speech therapies for ten hours every week. He also had eleven doctors. I had to quit my job, which left us with only one income. As Josh got a little older we realized our area did not provide most of the services that he would need, so we sold our home and moved to Pennsylvania. Josh had a wonderful teacher for preschool, but no therapy center would take him. I had a friend in South Florida who had a daughter with 1p36, and she was doing remarkably well. Her therapy center offered an intensive therapy program; something insurance would not cover. I decided to have a fundraiser and raised twenty-five thousand dollars and Josh and I headed to Florida for two months. After preschool we sold our second home and moved to Florida. We lived there for two years but unfortunately could not afford to stay. My husband and I separated and the three of us moved to North Carolina. He lives only a few miles from us and visits Josh almost every day. Most of the programs that were in North Carolina have dissolved, and again we are left without the proper help. We are now facing our fourth move in nine years. If it were not for our families and Josh’s father I am not sure how we would survive.

If you remember we were told Josh would never be able to do anything on his own. That doctor ended up eating his own words. Two years after Josh’s diagnosis we went back to that geneticist who was completely surprised by Josh’s progress, and apologized for saying Josh could never learn. I should have played the lottery that day. It is not often you hear a doctor admit when they are wrong.

Now let me tell you why I have sacrificed everything for my boy. Josh is an absolute love bug. He is constantly showering me with hugs and kisses. He scoots around our home and plays with toys that indeed he can activate himself. He is almost independent with his walker. He uses some sign language, and is starting to master a communication device. He is the funniest child I have ever known. In typical boy fashion he loves anything gross, noisy, and smelly. He has the most contagious laugh, and is constantly trying to get others to laugh with him. When he is mad he will yell Ma. It always seems to be my fault. He will ignore people who have been mean to him and scoot over to play with those who have been nice to him. I always say you can tell if a person has a good heart by Josh’s reaction to them, and his instincts have never been wrong. He is feisty and stubborn. Josh is the smartest, bravest, ,strongest, most beautiful boy I have ever known. No matter the sacrifice I would take him as is a million times over. He is truly my greatest love.

Where do you find help for your special needs child?

2012-07-18T13:41:00.001-07:00

I have had several people ask me where their children can get help. I am no expert, but I sure am trying to be. We live in North Carolina and this states services are horrible. I can't wait to move out of this state.

Here are some resources that may assist you in your quest for help.

2012 State Medicaid State Rankings

Top Pediatric Hospital Rankings

These resources can point you in the right direction. However, there are many more questions you need to be asking.

Are you looking to put your child in public or private school?
Will you be able to receive affordable childcare in the area?
Check out parent support sites in the area you are looking at, and don't be scared to ask questions.
What do you want for your child?
How are the therapy centers?
What are you looking for in a pediatrician?
Are there any large hospitals in the area?
Are they training hospitals?
Are the doctors familar with your childs disability?
Are there jobs in the area?
Is the area affordable to live?
Are there special needs activities in the area? (baseball, special equipped parks, sn swimming classes, hippotherapy,etc.)
Do you know anyone in the area?
Do you need a support system?
This is a life change make sure it is right for the entire family.

When you are looking to make such a huge move you need to make sure everything you need is there. We have moved several times and I still haven't found all of the help that I am looking for.

The school system here is an absolute joke, and there are even times I am sick about sending him.
There have been a few incidents that scare me, but that is another post.

Although, there is no way to completely know what you are getting yourself into. There are ways to protect yourself. We made this last move in haste. I did check the area, but the funding for special needs services literally fell apart weeks before we moved. When I checked the area most services were here, and as I was organizing the move that security completely disappeared. Since I can't work, because there are no affordable childcare facsilities we have been stuck in this horrible county. It is a beautiful state, but we can't enjoy it, because it is not designed for children like Josh.

Now before you tell me that you live in North Carolina and your child receives what they need remember our children and families have different needs. Make sure the area has what is best for your family.

Please feel free to comment and ask questions. If I haven't addressed something in this article I will be willing to try and find you an answer.

Have a Blessed Day!

My Silly Green Monster

2012-07-13T12:53:00.003-07:00

My silly green monster had a blast with our homemade paint.

This was great sensory play. Best of all we had so much fun.

Click here for homemade paint recipe

4th of July Fun

2012-07-07T12:07:00.001-07:00

Josh has never seen sparklers, so I decided to get some this year. He has only seen fireworks once, and wasn't that impressed. He liked the sparklers. He liked the fact that I stood up in the middle of our neighborhood and pulled out some of my high school cheers. I used the sparklers as pom poms and even landed a few jumps.

It made my son laugh and that is all I wanted. Let's face it my neighbors all know I am goofy. They have all heard me make funny noises, sing loudly, and dance all to make Josh smile. I sing silly songs throughout the entire neighborhood just so he will walk with his walker and not scream.

Good thing we are staying in our street when we move. The neighbors are used to us. That is a story for another post.

♥♥Making Memories♥♥

My son is a ROCKSTAR!!!

2012-07-05T14:17:00.000-07:00

Tonight Josh decided he wanted to go sleep after his bath. I thought it was cute he rolled over and covered himself with his towel. He closed his eyes and started to drift off to sleep. I thought I wore him out, but no my baby wasn't feeling well. Two minutes later he was throwing up. My poor pumpkin. He doesn't usually throw up so he was a little freaked out.

I cleaned him up and got him dressed. I wanted to hold him in my arms and snuggle him. I think all Mom's need to feel needed when their baby is sick. My boy had other plans.

Five minutes after being sick ..... here is my rockstar.

Kids really do make adults look like big babies.

How do your kiddos amaze you?

I Believe

2012-06-21T17:22:00.002-07:00

I believe in God. I have faith that He can and will perform miracles. I know it seems like I can write about negative things, but that is the reality of our world. I want people to understand the "special needs world." I know my situation is only temporary. When our 5 weeks of pure chaos is over I know we will be okay and stronger. I have no doubt that with prayer and persistence we will be okay.

Please don't think I want a pity party. I only want you to see what special needs families go through. We don't usually get the tons of money that most people think we do. We are usually the first that the government takes from. The only thing that I ask from you is to pray for my family.

When the Stress Keeps Coming

2012-06-11T17:24:00.001-07:00

The comments I hear often are "You are the strongest person I know"

"I admire you. You always have a smile on your face."

"I could never do what you do."

The truth is that I have plenty of reasons to smile. I have been blessed with an amazing son. My son loves me and is able to show me his emotions. I was told he would never know me. I was told that he would not understand anything around him, Well, as you can see from the picture above and below the doctors were wrong.

My sweet boy is watching Abby Cadabby on the Nook here.

When he is happy it brings me joy.

He loves to play like other kids

He likes to relax, play with his toys, and watch some Dora at the end of the day.

He loves to travel. We climbed a mountain here. If there is a path for the chair we're there.

He loves the water.

He makes me smile.

God has provided me with a miracle and I don't take this blessing for granted. Yes, I have many things to smile about.

However, being the Mom a child with special needs can also take a huge toll on you. When nobody is looking and my beautiful boy is asleep....

I look like this

I cry often. I wanted to spare you the full picture. I am not a cute cryer. Sometimes the stress and responsibility that I have can be overwhelming. There are not always services in place to help us live a somewhat normal life.

I can't send my child to after school care. They don't offer it for children with special needs in my area. I can't send him to daycare, again they won't provide services to a child that is so severely delayed. I can't work, because my son goes to a year round school and he is off for weeks at a time, several times a year. Not to mention the absence I would need to take due to sickness. If I send Josh to school with a little cold it could turn into something much more severe to one of the other children in his class. Sometimes children with special needs have a much weaker immune system. A small cold for Josh maybe pneumonia and hospitalization for another child, so I have to protect the other children from his sniffles.

This is my life right now. I have to move because my landlords are selling my house. I need to find a new place to live, but I need money for that. My family members that have helped me financially will no longer be able to help. I moved my ex in, but with all of the stresses he has decided to leave again. You know the saying " When the tough gets rough, the tough gets going." Well, that's him. He could never handle stress.

My beautiful son needs to have major back surgery. One doctor wants to put in a full rod in the next few months, and the other doctor wants to put in a partial rod next month. On top of that Josh's foot has been causing him pain. The back surgery is no joke. It will be painful and there are a lot of things that could go wrong. I live in an area where I have no one, and I have no where to call home anymore.

We have never had a tremendous amount of emotional support, so I don't know what to do. I keep praying and trusting in God that I am making the right decisions, because right now my life is in complete chaos.

I am strong! I will always do my best, but sometimes a girl just needs a shoulder to cry on. Someone that isn't going to judge me and tell me what's best even though they have no idea what they are talking about. I get lots of advice, and I know people mean well, but they have no idea what is best for Josh and myself. I need someone that isn't going to make this about them, because it is not about them.

I have lots of people say they will be there, but when I need them they are no where to be found.

Please understand as a parent of a child with special needs I don't want pity. I have an amazing child why would I need to be pitied? I don't want you to fix it. I have accepted Josh for who he is disability and all, and I really am okay with that. I don't want your charity.I want to stand on my own two feet and figure out a way to do that. I just want a true friend. Someone that will listen, not judge me, and love my son. Someone who can see Josh for Josh, and not allow his disability to fog their view of him.

New Chair

2012-05-29T09:44:00.002-07:00

Special Tomato Seat

Somebody got a new chair. I am so excited. He outgrew his last one. He needs a buckle to sit at the table. We have been having picnics on the floor for the past couple of months. I am so happy that we are now back at the table. It is much nicer on Mommy's back to sit on a chair.

Doesn't he look thrilled? This chair is so soft. I love it!

Psalm 23 Verses 4 - 6

2012-05-08T07:45:00.000-07:00

⁴Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.

I have been told that David wrote this Psalm while running from Saul. Everything was not good in his life, but instead of giving up he leaned on God. He was saying to God; Even though I going through a bad place I know you are with me. God, I know you are watching over me and protecting me. I have no need for fear. You take that burden from me and I am at peace.

⁵You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.

God provides. David has his needs met even though he was on the run from his enemies. To anoint oil over your head was to be clean. To smell fresh. David saw his cup as full. God provided his needs for survival. I am not sure why, but this verse has played over and over in my head since I was in middle school. I have always been drawn to it. Maybe it is God's way of telling me He has my back.

⁶Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell^[a] in the house of the Lord
Forever.

God is Good! He will always see us through. David is proclaiming God's greatness and that through God's goodness and mercy David is able to live in God's glory forever.

Keep in my as you read my interpretation that is all that it is my interpretation. I still have a lot to learn when understanding the Bible. I could be very wrong with my descriptions. If you see it differently or the same I would love to hear your thoughts.

Psalm 23 verses 2 and 3

2012-05-02T21:16:00.002-07:00

Yesterdays verse:

²He makes me to lie down in green pastures;
He leads me beside the still waters.

Our pastor gave a great visualization for this verse. She said God wants us to lie down so we don't smash down the path He has already laid out for us. Still waters is peace. I believe this verse to be about peace and rest.

³He restores my soul;
He leads me in the paths of righteousness
For His name’s sake.

This verse I believe is about God's amazing power. He can put me back on my right path when I have strayed. I am having some trouble finding the tight words for this verse. I feel it but can't convey it.

Can anyone else put this verse into words?

What's your take on Psalm 23?

2012-04-30T18:19:00.001-07:00

Our pastor gave us some homework this week. She wanted us to meditate on Psalm 23. We are to take verse a day and meditate on in. What does it mean? How can we incorporate in our lives today. I actually like homework. If only I had that attitude when I was in school. I thought maybe you would like to take the challenge with me. Leave me your thoughts.

A Psalm of David.

Psalm 23

The Lord is my shepherd;
I shall not want.
²He makes me to lie down in green pastures;
He leads me beside the still waters.
³He restores my soul;
He leads me in the paths of righteousness
For His name’s sake.

⁴Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.

⁵You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
⁶Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell^[a] in the house of the Lord
Forever.

Today's verse:

The Lord is my shepherd: I shall not want.

I take that to mean that God is like a shepherd. He takes care of me. He provides my needs.

What do you think? Can you addd anything to my my thoughts?

Don't Mess With My Kid!!!

2012-04-26T10:25:00.001-07:00

There are very few things in this world that can bring my claws out, but if you mess with my boy I will bring you down.

As a Mom of a nonverbal child one of my fears is that Josh will be mistreated when I am not around and I will never know. He can't tell me, so what is to stop someone from being cruel to him?

When Josh was four years old I dropped him off at school and when I got to the parking lot I realized that he didn't have his gloves. It was cold out and they were having fall fest I knew he would be outside. His gloves were in my coat pocket so I turned around, as I reached the bathroom I saw his wheelchair sitting outside (the bathroom was too small for his chair). When I got closer I could hear his aide yelling at him and I could hear Josh crying. I ran the rest of the length of the hall and flung the door open. His aide was shocked and stumbled for words. She was standing over Josh changing his diaper. I looked at her and said "you need to walk away from him. I have it from here." She told me Josh kicked her in her private spot. There were so many things wrong with that statement.

1. Josh has never been malicious to anyone, ever!

2. Josh does not stand on his own, let alone is he able to kick his leg high enough to reach that spot. 3. He was on a changing table that was above her navel and his pants were around his ankles.

I never found out the true reason that she was screaming at him. I did however make sure she would not ever work with him again. The school told me it was my word against hers and no disciplinary action occurred. The school essentially called me: the parent a liar and her: the assistant a victim. Pat her on the back " Oh it's okay there's always one parent in the pack. hahaha" The only victim was Josh. They wouldn't even remove her from the room they only removed her from Josh. I told them if I ever found out she was near him I would take legal action. I literally threw up every morning for the rest of the year knowing that he would have to see her face and hear her voice. It was repulsive. I did trust his teacher that she would keep that woman away from him. That was in the beginning. I am a seasoned pro now and I will make sure you are terminated or removed from the school if there is ever a next time.

Yesterday I came across a video from a dad with a son with autism.

http://www.youtube.com/watch?v=tfkscHt96R0&feature=channel&list=UL

This video broke my heart. I know it happens all of the time. Our society has sent a message that it is okay to be verbally abusive to children with special needs. Time and time again I hear the stories or I see it with my own eyes. It shakes me to my core. How is this okay?

I won't let Joshua ride the school bus because every year I read about and hear stories about children with special needs being abused on the bus.

I have an acquaintance that opened her own school because of conditions she saw at a public school her daughter was to attend. She witnessed teachers tying a child to a chair feet and all.

I have witnessed children being confined in a corner and not being allowed to participate with the class. One school Josh went to had a padded room with a window. I knew some of the children I would see in that room. Children that were curled in a ball on the floor crying and begging to be let out. I know this sounds exaggerated but it isn't.

Do your own research. When I was watching the above video on you tube I found other videos that were similar to it. I know I have found Josh strapped in his chair in a corner while the rest of the class is engaged in something else.

I realize that a teacher is not Mom or Dad. I understand they are going to do things differently than I would, but you still have to treat my child with respect and dignity. He is a person with feelings. Children with special needs can't fight for themselves. Non verbal children can't tell someone what is happening.

I had one of Josh's (past) teachers tell a friend of mine. I wish my child had special needs because you really don't have to do anything. If this is your attitude quit your job right now.

I love being a part of this "special needs world." Thank God I do because I didn't have a choice. If you have a choice and don't love being a part of this "special world" please go somewhere else. You are not helping these kids. You are only hurting them. You are never going to get rich off of them. I know there is a career out there that you are more suited for. Please leave my child and other children with special needs alone.

This topic is unreal to me. We shouldn't have discuss defenseless children in the United States that are being abused by the very people we trust to educate them. There should be no union protection for someone that mistreats a child. Parents of all children need to realize this is happening and say NO MORE. We will not accept this.

A Little Inspiration

2012-04-24T10:11:00.000-07:00

Don't Quit

by Anonymous

When things go wrong, as they sometimes will,

When the road you're trudging seems all uphill,

When the funds are low and the debts are high,

And you want to smile, but you have to sigh,

When care is pressing you down a bit

Rest if you must, but don't you quit.

Life is queer with its twists and its turns,

As everyone of us sometimes learns,

And many a failure turns about

When they might have won, had they stuck it out.

Don't give up though the pace seems slow,

You may succeed with another blow.

Often the goal is nearer than,

It seems to a faint and faltering man,

Often the struggler has given up

When he might have captured the victor's cup;

And he learned too late when the night came down,

How close he was to the golden crown.

Success is failure turned inside out

The silver tint of the clouds of doubt

And you never can tell how close you are,

It may be near when it seems so far;

So stick to the fight when you're hardest hit,

It's when things seem worst that you must not quit!

Born Again

2012-04-22T23:31:00.000-07:00

I was 13 when I gave my heart to the Lord. It hasn’t always been an easy journey, but the devil does not want it to be.

I was at Evangel Temple church in Toronto, ON with my grandparents and cousin. I was sitting in the balcony when I heard Pastor Benny Hinn say God has just healed a child from chronic migraines. I was sitting there with a painful migraine and in that moment I felt something flow through me and my migraine was gone. I knew God was real and that he was a God of grace and power. I went to the alter at the end of the service and accepted Christ as my personal Lord and Savior.

That summer was wonderful. My grandparents were both Pentecostal ministers. They were extremely involved with their church. I went to church at least three times a week. All of my friends in Canada came from Christian families. I was baptized that summer. I received the Holy Spirit and started speaking in tongues. I went to a Christian camp and out of a few hundred children; I received the “Rancher of the Week” award, because I displayed the most Christ-like behaviors. It was easy being a Christian, and then I had to go back to the real world.

I returned to Maryland at the end of the summer. I had no support system, so being a Christian became a whole lot harder. I had relatives threaten to beat me up if I didn’t stop talking about God. I had family and friends think I had lost my mind. They said my dad’s parents had brainwashed me.

I went to a Christian school, but according to their beliefs speaking in tongues was in the past. I was called into the principal’s office an accused of being a satanist. I had short hair and was wearing a black cardigan, so I couldn’t be a Christian. Teachers had dragged me out of class, because I debated them. My mom is Catholic and we had a teacher say 98.9% of all Catholics go to hell. I raised my hand and asked “How do you know? Have you gone to Heaven and hell and counted all of the Catholics? I quoted scripture to disprove a teacher’s agenda. Throughout middle school, I drifted further away from God. I attended a public high school and soon forgot my beliefs.

High School went by quickly, and my by my early 20’s I tried to ignore God’s voice all together. I partied every weekend. I was searching for love and acceptance. I was so lost. I felt alone. An outsider may think I had the greatest life, but I was constantly trying to fill a void. I gave my heart, my soul, my being to God, and because of that I knew what I was doing was wrong. What I was feeling was conviction, and I knew that. I still tried to ignore it, but God’s voice was there saying “You deserve better.”

I settled down in my mid-twenties. I ended up with a man who has no intentions of ever marrying me. We have nothing in common and can honestly go days without speaking. We have a beautiful son Joshua. Josh was diagnosed with 1p36 deletion syndrome when he was three weeks old. After Josh’s diagnosis, I found God again. Fear brought me to him and fear would once more lead me away.

I came to God out of selfishness, not because I wanted to love Him. I wanted something from Him and that was to heal my son. I prayed that He heal Josh and make an example out of him to bring others hope. Then one morning feeling panicked I ran to Josh’s room and he was having a grand mal seizure. He turned blue and his little body just stopped. I called 911 and told the operator that he had died. My brain wouldn’t stop, yet everything seemed like it was in slow motion. Josh ended up being okay. An ambulance came and he was later flown to Baltimore. In that moment, I should have been thanking God but instead I cursed him.

Why would he do that to Josh? To me? I had “Christians” tell me my son was being punished because of my sins. The older Josh got the more people disappeared. People in public would stare. Strangers would make horrible comments. I finally through my hands to Heaven and screamed “I am at my limit!!! You said you wouldn’t give me more than I can handle!!! I can’t handle this! You are not real!” I felt abandoned and because of that began to question the Lord’s existence.

This past November I finally broke. I have written about my anxiety attacks so I won’t go into too much detail. Again, I started praying out of fear. I played Christian music around the clock. Josh’s father and I had separated for two years I had him move back home. I did everything because of fear. I started taking anxiety medicine and I started to feel better. I stopped playing Christian music. I stopped praying. I started following my old ways.

To be honest I am not sure what the change was, but I knew I wanted God in my life. Not only did I want him in my life but I want to immerse myself in Him. I want Josh to know Him. I started to pray. I decided to find a church. We went to a few different churches until we found the right one for us. I am excited to go to church. I would go everyday if I could.

The first time in my life, I can hear God. I want to read the Bible. I want to completely understand the Word of God. I have no idea where I am headed, but I know he is leading me somewhere good. I have learned to trust Him, and obey Him. He doesn’t want me to fail.

There are some really awesome things that God has been leading me too. I am going to keep you updated so you can see how He is working in my life. If you are not saved, I hope my experiences will inspire you to have a personal relationship with the Lord.

Girls Just Wanna Have Fun

2012-04-12T16:47:00.001-07:00

In keeping with the theme of anxiety and I just got to me I wanted to post more about... ME! Trust me I am not conceited, but I am working on it. For so many years I have not been happy with myself. I haven't been smart enough or pretty enough. I thought I was boring. I felt like I had nothing to offer anybody.

Many people feel like this. Depression and anxiety affect around 14 million people each year. I am not alone. We are raised in a society that pushes for more. Good is never good enough. I am here to say you are good enough. Don't let other's insecurities affect how you see yourself. Sometimes we have to go back to a time when we were carefree and just be silly and forget about our stresses.

I feel my best when I am being myself. I am goofy. I love to be loud and obnoxious. I love to sing and dance like a wild woman. Society tells me as a 37 year old mom I need to be mature and serious. I am responsible. My son is very well cared for. I make sure he has food, shelter, love. I make sure he is taught to be kind and to respect others. I make sure he gets to all of his appointments. I work with him everyday with walking, standing, climbing, communicating,self feeding. (For those of you that are new here; my son has special needs). Why do I have to be serious? Why do I have to be the type of parent my Mom was, my neighbor is, or like the woman I saw at Target? If you are not putting your child in jeopardy you will never hear me judge your parenting skills.

Why do I let other people tell me how I'm supposed to act? I'm not hurting anybody. Actually, I strike up friendly conversations with strangers in the grocery line. I am a very kind, loving, and helpful person, but I have friends and family members tell me that is a ridiculous way to be. I dance through my house and have been asked to stop. I will not change for anyone anymore. I will try with all of my might to be true to myself.

Keep in mind I am serious when I have to be. I don't dance and sing all over town, but we all have the right to let loose. If you aren't hurting anybody do whatever it is that makes you happy.

I have someone in my life that constantly puts me down. I started to believe this person. I am taking my control back. I will not allow someone else to dictate my self worth any longer. I hope you learn to let your hair. Learn to be yourself. Learn to love yourself.

Today's lesson: Be true to yourself.

Tonight's homework: Run around your house singing "Girls Just Want To Have Fun,' at the top of your lungs.

Men you can sing "Boys Don't Cry."

Nicole Bishopp: The Sharpie Artist

2012-04-04T17:28:00.001-07:00

Nicole Bishopp is a wife, mother, sister, daughter, snowboarder, skateboarder, artist, adventurer, and college graduate.

Nicole grew up in a small town in Maryland. She knew she wanted to be an artist since she was in grade school. Her family wanted her to seek something different for work since there were not many opportunities for an art career in Hagerstown. Needless to say, she was anxious to get out and explore the world as soon as she could.

She attended Montana State University (Bozeman), and graduated with a BFA in Sculpture/Ceramics
She also earned a degree in Web Design at The Art Institute of Pittsburgh.

I knew of Nicole when I was a freshman in high school. She intimidated me a bit, and because of this it took me until my senior year to actually talk to her. This is saying a lot because we went to a really small school. This may seem irrelevant , but there’s a reason to my digression. I mentioned that I would be writing about people who inspire me. Nicole is one of those people. I was so intimidated by her, because in a time where most people are desperate to follow the crowd and be accepted Nicole remained true to herself. She never struck me as the type of person that would change herself for someone else. I think we have all admired someone from a far because of a strong quality that they possess. I got to know Nicole my senior year and discovered I was right. She is an extremely talented artist. She believes in herself, and is kind to others. She has an energy that is wonderful to be around.

Nicole’s first job was working for her father. She has come a long way from cutting glass for her father’s side business. She is now an accredited artist.

She started out creating 3 dimensional art in college and loved
the freedom of it. This is the first piece she sold. Hitch hiking. He is 6 ft. tall sculpture.

After college started a pottery business
at MSU . She said she had so much fun and loved throwing pots.

She lives in Washington with her husband and son. She is a long way from home, but she is thriving in her artistic endeavors.

One day she picked up a sharpie and started to create unique and beautiful art. I asked her why sharpie and she responded because of the permanence. She started doing illustration a year ago and In her words was lucky enough to be interviewed by Sharpie Permanent Marker and featured on their website. Here’s the link to her work.
http://blog.sharpie.com/2011/07/classic-marker-new-media/

She has also combined her love for skateboarding and art. Here are some of her examples.

Upcoming Events:

Nicole has a showing of her work May 24, 2012 in San Diego, CA at 4th
and B(http://4thandbevents.com/) with RAWartists
(http://www.rawartists.org/)

If you want to see more of Nicole’s art please follow her on Facebook and Twitter.

www.facebook.com/nicolebishoppart
http://twitter.com/Nicole_Bishopp

Right now Nicole is in the running to have her artwork put onto a bottle. You can vote once a day for the next five days.

http://www.talenthouse.com/creativeinvites/preview/a6dec7715bc4082a4de142729655a7b6/446

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of other’s opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.” Steve Jobs

Nicole inspires me. She is living her dream. She knew what she wanted out of life and stayed true to her path. Her passion is clear in her work. I hope you will enjoy her art and support her ambition.

Whould you feed your child like this?

2012-04-03T09:23:00.000-07:00

Alicia Silverstone feeding Bear Blu

There is so much controversy over this video. What do you think of Alicia's method of feeding?

Do you or anybody know have some out of the box parenting strategies?

There is no concrete evidence that this is harmful to her child. Doctors and scientist have come up with contradicting research about this. Some say it helps build a child's immune system. Others say it can introduce harmful bacterias to attack the child's immune system. What do you think?

Feeling Anxious..Take a Pill Feeling Stressed...Have a Drink

2012-03-28T20:01:00.000-07:00

I have always been a fairly open person. My motto has always been “I don’t have anything to hide.” I sometimes wish that I had the perspective “I may not have anything to hide, but I also don’t have to put all of my business out there.” Unfortunately, my mouth and typing fingers don’t have a filter and I just can’t stop putting it out there for the world to see.

My discovery of anxiety occurred in November. I say discovery because I really did not understand what an anxiety attack was until I went through it. I ended up in the emergency room. I didn’t know what was going on, but I felt like something in me finally snapped. The physical aspect of an anxiety attack is overwhelming. It’s different for each person. I felt like I was dropping from a roller coaster and the fall wouldn’t end. I later developed the quite unusual symptom of feeling like my body was on fire.

I quickly did what I had to do to get myself back on track. I called a doctor and got put on anxiety meds. I also started seeing a counselor. I called my Mom and asked if she could come and help with Josh. When I call for help it is major indicator that something is seriously wrong with me. I never ask for help. My Mom arrived to help with Josh. I was fortunate that she was able to come and assist me. I’m not sure what I would have done if she didn’t come.

The day of my doctor’s appointment finally arrived. I was so relieved. Everything went well and as I left with my anxiety medicine prescription I climbed into my van and nothing. I turned the key again and silence. I literally sat and hysterically laughed with Jimmy Buffet singing in my head “if we couldn’t laugh we would all be insane.” Thank God I had my script in hand or my laughter may have lead to mad insanity. Over the next week I took my van to three mechanics, dropping a few hundred dollars at one of them, only later to find out that my van was going to cost a whole lot of money to fix. Needless to say two months before my van was paid off we parted ways.

Trying to climb my way back to my own normalcy hasn’t been easy. I have made a couple of mistakes along the way, but I can assure you I am on my way back up. I am a Christian and I know that God has something better in store for me. He’s just cleaning out all my trash right now.

I hope through my experience you realize that if you are going through something get help.

I waited and I suffered greatly for it. I didn’t go through all of the details, but I went through hell. Don’t wait. If you need help get. Go to your doctor, a counselor, your minister, somebody just don’t deal with it yourself. Don’t lose yourself in a spiral of anxiety or depression. You can live a content and happy life. Why would you accept sadness. I started to feel the anxiety again this week and I immediately called my doctor. Anxiety is mental. You can overcome it. I have a child that relies on me he can’t wait for Mommy to feel better.

Feeling Stressed? Have a drink.

(Stress and Anxiety are not the same thing)

Meet My Big Ben

We get along just fine.

We Have to Move

2012-03-27T17:44:00.000-07:00

Well, I have known for the past two months that my house is going up for sale. The time has arrived and I am a little sad. Since moving to NC two and a half years ago the only thing I have wanted to do was move the heck out of this state. I have prayed about and cried over this move, and around Christmas I finally felt peace about my decision. Josh was finally in a descent school and seems happy. We are finally starting to become eligible for some help for him, we joined a church, he is involved in baseball, and I get along with our neighbors. We have finally started putting down some roots. Literally two days after I decided to stay I received a letter from the landlord letting me know the owner would be selling the home.

I know that God will provide. I know He has a plan for us, but I can't help but wonder where will we be a year from now. Will we still be in North Carolina or will we be somewhere else? I have searched the area and rentals are few and far between here. We looked into buying, but I think we want to wait at least another year. I really do miss owning my home, but with all of our moves it seemed silly to buy in every state.

The funny thing is that for the first time in my life I am not worried, I know God will not let me fall. I truly believe something big is coming our way.

It's just ironic, (really just the way things go). When I finally discovered the beauty in my surrounding we have to leave. I only hope with the next move that I get to appreciate the beauty from the beginning.

Glitter Playdough

2012-03-25T17:36:00.001-07:00

http://thespecialmomsworld.wordpress.com/crafty-ideas/glitter-playdough/

Glitter Playdough

Recipe found at:http://tradewindtiaras.blogspot.com/2011/10/diy-project-how-to-make-glitter.html

Ingredients:

2 cups of all-purpose flour

2 cups of water

1 cup of salt

1 tbs of oil

1 tsp of cream of tartar

food coloring

glitter

Directions:

1. Add food coloring to the water. Put it straight into the saucepan. It is easier for color distribution.

2. In saucepan add flour, cream of tartar, salt, and oil . Cook over medium heat, constantly stirring until in becomes play dough.

3. Place dough onto the counter and let sit until it’s cool enough to knead. Flatten some on the counter, and sprinkle generously with glitter. Knead the glitter into the play dough. If you want more sparkle, repeat this step.

4. Store in an airtight container. This recipe filled 6 4oz plastic containers.

Enjoy!!

Wrap a bow around these and they would make great birthday party favors.

Contests | Parenting Special Needs Magazine

2012-03-22T22:25:00.001-07:00

Contests | Parenting Special Needs Magazine

Bite Bands

We need these. I have never seen bite bands, but now I am not sure how we ever managed without them. Good Luck!! Give Aways are great!

The Special Mom's World: Got To Be Me

2012-03-22T17:15:00.002-07:00

The Special Mom's World: Got To Be Me: I know this is a scary picture, but there is a point to it I promise. I have a new segment that I am introducing next week about inspiring ...

Got To Be Me

2012-03-22T17:15:00.000-07:00

I know this is a scary picture, but there is a point to it I promise. I have a new segment that I am introducing next week about inspiring people. One trait that has always drawn me to certain people is their individuality. Growing up I was to insecure to show my true self. I followed the crowd as many of us do. We fear what others will say about us, but I believe when we hold ourselves back we fail us. In this new segment I will be highlighting everyday people who I believe stay true to themselves. People that follow their own path. I believe we all have a calling, a purpose on this earth, and if we allow others to stifle our choices we might miss out on what will truly make us happy. I am now getting to the point. Be true to who you are. If you have blue hair, tattoos, piercings, or if you wear ties and dress shirts, or baseball hats and shorts. If you are loud or quiet. Academic. mechanical, creative, athletic. It doesn’t matter. If you are being true to yourself and you are not hurting others in the process that’s what matters. This is not to be confused with being selfish. We all have priorities that come first sometimes. This is about being free to be you. I guarantee the people who love you will still love you even if they don’t understand you.

See it doesn’t matter what I look like he still loves me.

Celebrate life, find your purpose, and be happy!

Miracle League

2012-03-17T22:53:00.000-07:00

We had a fantastic day. Today was Josh’s spring training for his new baseball team the Bulls. He did great. He threw the baseball several times. I have never seen him throw a ball. He normally has no interest.

He danced his way across home plate.

Children with special needs don’t usually have the opportunity to be involved in extra curricular activities, but thanks to organizations like the Miracle League of the Triangle these kiddos have an opportunity to be involved in their community and have some fun.

On September 16,2004 the Miracle League of the Triangle had its first game. That first season included over 100 “special” athletes and more than 200 community volunteers. Over the next 6 years the Miracle League of the Triangle has grown to more than 300 athletes and they actually have a waiting list for the volunteers.

The Miracle League of the Triangle is a non-profit organization and rely solely on donations. If you want to find out how you can help please check out their website. http://miracleleagueofthetriangle.com/default.aspx

Organizations like the Miracle League provide children with special needs an outlet and a place in their community. They also provide the families with a support system and the chance to see our kids do “regular” things. I encourage you to find an organization like this in your community and see how you can help. Believe me once you enter this amazing “special” world you will never see things the same again. It is wonderful.