Wednesday, December 28, 2011

Survived the Holidays

Holidays are a little tricky when you have a child with special needs but especially with autism. Marissa gets over stimulated very easily and then begins to act out by hitting, screaming, throwing things and just over all whiney. While we had tried to make some changes in this years routine to make it more manageable for her, it still was not enough to help her. The break and lack of routine also don't help much with managing her behaviors. But school will be here soon enough and so we just enjoy this time that we get to spend with her.

Every once in a while I like to throw in a comment about what is great about having a child with autism. Marissa is a giver and not the best receiver of gifts. Christmas day at our house this year took almost 4 hours for her to open her gifts. (She only had 10). But its the enjoyment out of it, in everything there is a routine. "Read the bow (tag under the bow) whose it from", "all thank you mommy and daddy" (before she opens it), "thank you, I love it" (after she opens it). This year I switched from pattern paper to plain paper to see if that made a difference in how she opens a present. It seemed to help some as she was not ripping a pattern but I realized it was the thoughts and her thankfulness that she wanted everyone to know about. Also, she hates a mess. So after each present was opened the wrapping paper would have to be immediately put in the trash bag. No lingering paper on the floor here.

I hope that each of you had a wonderful Christmas holiday. This year I just took time to enjoy the day. Whether you have a child with special needs or not Christmas time can always be a challenge. I wish each of you the best in 2012. Thank you for taking the time to read my blog and allowing me to share this journey with you. Each of your comments help me realize that I am not doing this alone and that I do have people who care about Marissa, Steve and I. All I can say is that you are appreciated more then you know. Happy New Year!

Monday, November 14, 2011

Fun Times Are Here Again!

The one thing I know from my employment is that when a child experiences a trauma they will often regress back to the last milestone that they accomplished. Marissa has proven this theory to be true and has begun to hit and kick again. She honestly started it immediately after her surgery but four weeks later she is still hitting and kicking. I was hoping it would be for just a few days but she continues to do it. She doesn't hit or kick all the time but just at certain times, like changing her clothes. I don't know why. It doesn't make any sense. We have done the same thing every morning since school started but now we have a little power struggle to endure. Fun times are here again!

On another note, Marissa continues to make improvements since her surgery. We won't know if the surgery actually worked until December 22nd. They will do a Urodynamics test at that time. While I don't pray for any child to have pain, especially my own, I do pray that she will be able to feel the tubes and that we know this surgery was not all in vain. If this surgery did not work, then we know that at some point her kidneys are going to fail. But, I must stay upbeat and positive, Marissa is doing better then anyone in their wildest dreams could imagine.

Thursday, October 20, 2011

What a Difference a Week Makes

This time last week, Marissa was still sedated from her spinal cord surgery. Today, she is walking around, crawling at times, but overall doing well. The doctors had told us that she would still have to be laying still and would not be able to move like she did pre-surgery. This is nothing short of a miracle. I thank God every day she stands on her own two feet.

Marissa's hospital stay was eventful to say the least. The first night we were able to room with a friend of mine from work whose son was also in the hospital. Marissa slept most of this night, waking occasionally, but refusing to eat or drink. This meant that the pain meds that Dr. Jane Jr. had ordered for her, she was not taking. Just a wonderful Tylenol suppository. On Friday night, Marissa was in a lot of pain. The Valium made her a little loopy and she would giggle and then have major back spasms. She was running a fever. They finally had to give her some pain meds through her IV that knocked her out and reduced her fever. Nothing like having a hand slap you acrossed the face at 1am, trying to talk to you. Saturday is when Marissa's autism decided to play a role in her hospital stay. Marissa was lets say wired. With some sweet tea, chocolate milk, allbuteral treatments, and Valium- she was up and ready to go. Not to mention the 9 month old baby we bunked with that just had cleft-palate surgery, who cried non-stop. Marissa went well crazy. Finally, they gave her Adavane at 11:30pm, which never came into effect until 1:15am. In the meantime, she is asking me the same questions, over and over and over again. On Sunday, I begged the doctors to send us home. Dr. Jane Jr gave his blessing and Steve and I were packed and ready to go in five minutes. Sooooooo happy to be home.

Tomorrow, Marissa gets her stitches out so back up to UVA we go. Grateful that she is defying the odds and is healing so quickly. Dr. Jane Jr. called her "courageous, amazing and remarkable". I would agree with him, not because she is my daughter, but knowing that most children and adults would not respond as well as she did to this serious surgery. She makes it hard to complain about anything, but she is simply one of the strongest people I know. While we are facing our challenges now, her level of frustration is high, and hoping that the surgery will improve her kidneys and her gait, I know that God is truly watching out for her. He proves it time and time again.

Monday, October 10, 2011

Pre-Surgery Day.... Completed

I am not sure really what I expected today, but I didn't think we would be at UVA for four hours. First it was the Acute Nurse Practitioner. She was great. She gave us a lot of helpful information and walked us though what surgery day was going to look like. She took a spinal cord model and showed us exactly where the incisions would be and the process it would take to get to the fatty fillium. I will say that Steve was understanding this explanation, as soon as she said they were going to have to chisel a bone, I was done. Then the Neurosurgeon came in next. Not so positive that this is surgery is going to fix the problems we intend for it to fix. He was a "downer" of our day. Then we went to get her blood drawn. Marissa has very skinny arms, so the first prick in her arm didn't take the second one in her hand did. The nurses spoke Spanish to her and she loved every second of it. She cried a little but not nearly as bad as I thought it was going to be. Then we went and waited...waited...and waited some more for the Anesthesiologist. We first met with a resident, who had the personality of a door, and then we met with the doctor who looked like he had stuck his finger in socket when his hair was wet. But, in the end, all was approved and Marissa is set for surgery on Thursday.

Every time we are at UVA, I learn a little more about Marissa. She is not scared of much and I am overwhelmed by her courage. She knows that mommy and daddy are there and that is all she needs. I looked at her today while we were waiting and said to myself "how did I get so lucky". Even with all this chaos and anxiety, Marissa is amazing to me. She won the hearts of the doctors today and some of the patients.

Thursday, October 6, 2011

Let the Preparation Begin.....

As my preparations are winding down for work as I get ready to go out on leave, my home preparation is just beginning. Yesterday, I realized that I was starting to feel the anxiety and stress of Marissa's spinal cord surgery. The reality is finally hear and I can no longer say "its two months away or one month away", it is now just one week away.

Marissa has been through a lot of medical procedures but never one as serious as this one. She loves the doctors and nurses and I hope that this doesn't change it. I pray that God will be with the doctors as they begin to maneuver the nerves in her spinal cord and that the outcome we all hope this will bring will actually be achievable.

As for my home preparations they are just beginning. I am preparing my heart and my mind. Allowing myself to be weak and allowing others to see me weak. Which those of you who know me well, know this is not in my personality at all. I will cry when I need to cry, let my guard down and let others help me, but most importantly I will trust God with all my heart and mind. I know He is in control and it is up to Him what the outcome will be, because He already knows it.

Wednesday, September 14, 2011

A "Friendly" Reminder

Today was a UVA day. Marissa had two appointments to get clearance before her surgery in October. As I was walking down the hall, I saw one of my friends, her husband and sweet baby girl. Her baby is about seven months old and has a deletion of chromosome 1. She and Marissa have some medical commonalities, but they are very early on in this process of understanding what is happening to their daughter. There she was so precious connected to the oxygen and a pulse-ox machine. The look in their faces was one of defeat, lonely and helplessness. As I left the room and walked towards my bouncing Marissa, I was reminded of the days when she would have to be strolled in to UVA with the same equipment feeling defeated, lonely and helpless.

I clearly remember the day Marissa was born. Once word had spread that she had medical problems, what should have been a joyful time for us, quickly turned to mourning. No one brought us balloons or flowers to celebrate in the birth of our baby girl, in fact, those that came to see us, had no idea of what to expect. I remember a few of the faces but I don't remember any words of encouragement. I also remember when Marissa was medivac to UVA at three months old. The doctor before leaving Lynchburg said "I have grave concern for your daughter". I thought that by the time Steve and I reached UVA she would have left us and became and angel in heaven. I remember every time she gets sick, panicked because I wonder if this is the time He is going to take her. I remember in each hospitalization, sickness, new diagnosis or no diagnosis at all- just and unknown, that I was in control of this situation.

I say I remember, because that is once how I felt. I lived in a world where I asked God "why me" but God gave me the greatest gift last year. Through a Beth Moore Bible study, I learned that sometimes, God has to injure us to Bless us. Even today He gave me another gift. He showed me this is where you were and now go to where you are now. I committed Marissa's life to Him way to late, but now He is in control not me.

While I wanted to sit there with them today, hold them, and give them encouragement, I couldn't. I brought Marissa in to see the baby she prays for nightly. There is nothing that I can say to them to make this situation any better, but hopefully seeing her full of happiness and joy can be encouragement enough.

I ask each of you to not only pray for Marissa but pray for this very precious baby girl. God is a BIG GOD and He reminds of us this every day. Marissa is the only one who has this Chromosome Disorder. This precious baby is one of a few. God made them, He has a purpose for them, so big of a purpose that He only created a few. So when you go to ask yourself, "why Lord, why me?", remember that He is mightier and bigger then anything here on this earth.

Wednesday, September 7, 2011

Let the Hitting Begin........again!

"My name is Marissa, it has been 8 hours since my last hit".

So, here we are week three into school and the hitting has begun. Last year, many of you may remember that hitting has been an on-going problem. One that we seem to get control over and then it starts again. Marissa's hitting is a tool of communication. Deep down I know that, but society doesn't see it that way, and therefore, it becomes a battle in our house of how we give out consequences for this action. We train our children not hit adults or other children. Some learn and some do not. Marissa is in the "does not" learn category. So like anything, I am trying to find the silver lining. The silver lining in this is that she does show some remorse and is always willing to say sorry. Does this mean that tomorrow she will not hit you, no, it means that the odds are if she is frustrated or stress, protect yourself because she is going to hit.

There are days when I think, I can't do this another day. How do you explain autism to a parent who has a child that has been hit by your child? Will they look at it as an excuse? Will they tell their child not to play with her? Will she be labeled a "behavior problem"? Or do Steve and I become the parents that everyone wants to avoid?

Today, I was feeling defeated. Not as defeated as I have been in the past, but never the less, defeated. Our consequences are not working and she does not seem to mind being without her prized possessions. We now have to hit our reset button and try something new again.

I have to hope and pray that one day, like many others in her life, it will dawn on her that hitting is not the way to go, using her words is.

Thursday, August 25, 2011

School is Back in Session!

Oh, the first day of school. The smell of new backpacks, crayons, paper, and glue. All the kids hesitantly walking to thier classrooms, high fiving their friends as they walk by, parents crowding the hallways and the teachers yelling "don't run in the hallway". These are the joys of first day of school. Marissa's day was a little different.

We always have to prepare Marissa for her day. I don't know how many six year olds thrive on "to do" lists but she does. On Sunday night, we went over her schedule and I reminded her that she has to get up early because it is the first day of First grade. So at 4:30am, Marissa woke up. Singing and seemingly excited for her day to begin. I guess I over did the preparedness for school. She got out of bed around 6:30am and off she was to start her day. We had a great morning and then we went to school. Marissa is an extrovert, differing from most autistic children. However, she was not as we went into the school. If she could have climbed back inside of me, she would. She would not talk to the kids in her class, she simply put her stuff in her cubby, found her seat and then sat down. She had a great first day.

So far, she has had a good week at school. She has had a little problem in doing her work, but it is more that she knows that she is suppose to be able to write like the other kids, but she can't, her hands won't let her. When she sees the other kids do things that she can't, she gets upset and becomes resistent to doing the work. I am hoping that with her new IPAD to come that she will be able to do her work with ease and not have these issues. At least this is our prayer.

In any case, so far so good. Greatful for at least one good week of First Grade. Praying for more good weeks to come.

Friday, July 1, 2011

I am a snails pace.

I am learning and unfortunately had a snails pace, that I am not going to be able to conquer or even overcome all of the obstacles that Marissa has to face.

I am learning that her hitting, while sometimes she has control, most of the time she does not.

I am learning that not all that she does is personally towards me, it just so happens I am the one standing there when she feels the urge to hit. I am learning that she has such a sweet side and a great personality, although, she hides it deep inside.

I am learning that alot of people put emphasis on things that just are not that important. I understand now that each hug, each kiss, and each "I love you", is not to be taken for granted. I have learned to cherish these wonderful things she does, especially when she does them spontaneously.

I am learning that each day I have with her maybe my last. I am understanding that this is the way for anyone, but even more true for my beautiful Marissa. I pray each day, this rare chromosome disorder does not end up taking her life.

I am learning that Marissa is stronger then I am. She is braver then anyone I know. I am amazed by her resilience and her fight.

I am learning that Marissa is my hero.

Friday, April 29, 2011

Your Not Being Nice

The hitting venture still continues. Each morning, somewhere along our morning routine, I get hit. Sometimes, it is just a tap and sometimes it is an all out explosion of hitting. Yesterday, Marissa took both hands and hit me on both sides of my cheek. Today, it was just a small tap on my waist. Each morning, I get hit. I have tried many tactics, tricks, games and bribes. But, to no avail. So, I am going to try and take another spin on this hitting thing- "your not being nice".

I have decided that if she is not nice to me, by hitting me, then I won't be nice to her and take away some of her many things. Okay, so your thinking, "you haven't taken away stuff before?". Aahhh, but I have. Only to give them back a day or two later with no improvement. So this time, I'm going to add another level of my disappointment with her actions. I know, I know, this is not going to work either.......

So, Mother's Day is next Sunday. She loves to give gifts. So, now I am suggesting that she give me the "gift of no hitting". My husband likes this idea because then he doesn't have to go and buy anything (although, I am saving this one up for a new car). The count down is on.... 7 more days until "Mother's Day" when hitting will cease in this house. (Got my fingers crossed).

Friday, April 1, 2011

Autism Awareness Month

As I sit here, the reality of Marissa's autism is very real. She is also sick currently which always compounds the situation even more. We have lived with this diagnosis for the past two years. However, we are gratefully that with her chromosome disorder we were able to have early intervention services in place when she was six months old. This has been such a struggle for us and especially for me. I had to grieve the child that I did not have and come to gripes with the child I have. Some days are easier then others, but we take one day at a time. There are lots of things Marissa is unable to do. Like now for an example, she is sick but she doesn't have the ability to identify what feels funny to be able to tell you, "my stomach hurts" or "my head hurts". Instead we have to play the wonderful guessing game. When she is sick she is what I call "hyper sensitive". Like now, she is standing beside me saying "something is wrong with my socks, mom can look at my socks". I look, nothing is wrong. Two minutes later, she says "mommy, I got something in my mouth". I look, nothing is wrong. Then she says, "mom, can you look a my finger". Over and over we do this. Move from her socks to her mouth to her finger without really knowing what is truly wrong. One would think it would be hand, foot and mouth disease, but its not. It would never be that easy. She can't tell me how her day went at school and she really doesn't have "friends" in the sense that other kids have friends. She makes funny noises and has major meltdowns. I often feel that I live the movie "50 First Dates" because nothing in my day is different when it comes to her. Recently, as I have listened to my friends talk about their children I have complied a list of things I am grateful for having a special needs child, who also has Obsessive Compulsive Disorder. So, here is my top ten list: 10. Marissa is not interested in the latest and greatest toys. So, I don't have to worry about tracking things down or stalking the Internet to make sure that perfect gift is under the tree at Christmas. 9. Marissa loves computers and electronic stuff. So if I can't figure out how something works, give it to her and in a few minutes she has it all figured out. 8. Marissa loves clothes. She has to make sure that everything matches. No dressing herself and wearing crazy outfits to school. 7. Marissa loves order and structure. Everything has it time and place. 6. Marissa loves music and songs. I have learned to stretch my creativity by making up songs to going to the bathroom to brushing teeth. 5. Marissa is the ultimate picky eater. So I buy yogurt, pound cake, mac and cheese, pancakes and waffles and we are covered. 4. Marissa's room is always very clean. Everything has its place and she hates it to be messy. 3. Marissa loves different languages. French, Spanish, and Chinese. We are covered. 2. Marissa has a memory like you would not believe. So I can tell you who got in trouble at school, what they did, and what she learned that day. Not by her telling me, but at night when I put her to bed, she presses "play" on her brain and I know. This really scares the teachers. (Yes!) 1. Marissa is so unique and I thank God every day that he gave her to me.

Friday, March 18, 2011

Hitting Dilemma

I am beginning to wonder why God has chosen me for this journey of raising Marissa. In the recent weeks Marissa's hitting had subsided. We almost went four weeks with no hitting. I thought that we had been successful in moderating this problem. Now, she turns 6 and it is back with a vengeance. I am tired and I am worn out. I feel like a punching bag. Do you know how it feels to be hit in the face by your own child? It is the worst feeling in the world. I can physically feel my stomach drop, my head throb and my heart cry. I can handle most things, but this is beginning to be impossible. I've tried everything from taking things away to the easy button at Staples, nothing is working.

So as I sit here, I am crying. It has been a long time since I've cried. I went in her room after I escorted her to bed, hoping that physically seeing that I was visibly upset she would understand, she just looked at me and told me to shut the door. Then I noticed her bed, she has put her elephant, cow, Mack and bear in her bed and line them up like her dad and I always do. The funny thing about that is her room was dark and she has a basket full of animals. I am not sure how she accomplished that, but she did.

I pray that God will give me the strength to help her overcome this hitting dilemma. I pray that this will be something I look back on and think "wow, that was a trial". As with everything, this to shall pass. Oh, I hope it passes soon. Because a girl that can get four stuffed animals out of basket of forty and line them up perfectly in her bed, in the dark, can certainly learn not to hit.

Sunday, January 16, 2011

"Mommy, I just hit you!"

One of the challenges of raising a special needs child is the delays in which they decide to do typical child behavior, with a twist. Marissa is about two years behind. Not all behavior is delayed, just the "best" ones. Like hitting.

The thing about hitting is that it should or could be controlled, but not when you have a Rissa. We have tried just about everything including bribery, but still the hitting continues. The positive in this is that she doesn't hit other children. Some days her hitting is so bad that when she goes to hug me I have put up my arm to block the hit. Only for her to wrap her arms around me and say "I love you mommy". Its an interesting world in which I live. One in which the hardest moments often become the sweetest.

My most recent decision to try and stop the hitting is to ignore her when she does it. So she will hit and hit. Then she looks at me with that precious big eyed look and says, "Mommy, I am hitting you". Like, "hello, lady- I'm hitting you what are you doing!". This seems to get her for a period of time but then the saga still continues and I am still getting hit.

As in everything else, I hold true to know that "this to shall pass".