Tuesday, December 31, 2013

Last post of 2013

For my last post of 2013, I want to start off by talking about two of our "big" accomplishments that we have successfully made this year. Believe it or not, one of his biggest areas of improvement is his sleep. I know, I made some jaws drop on this one. His sleep is still not fantastic but it may never be great. That is just one small minute characteristic of autism. Some children and adults with autism can sleep and have never had a problem. Some, on the other hand, have huge sleeping problems and Trenton is one. However, we have made some huge improvements over the past three months.  One year ago he was still in the sleeping pattern of waking up around midnight and running uncontrollably in our house for the next four hours. He would go back to sleep around 4 AM.  (Normally I would get to bed at ten, wake up with Trenton at midnight, go back to sleep from four to five AM) He would do this for a few months and then he would have one night or a few nights where he would sleep for some consecutive hours. My stomach turns just thinking back to that time in our life. I felt like a walking dead person. I constantly was light headed and did not feel human for one second out of my days. Now, a year later, he sleeps much better. He may have one or two nights a week where he does not sleep well. The other five nights (approximately) he will sleep for a good consecutive 6 hours, some nights it may be more like 8 hours. He will have a random week every once in a while where the whole week is bad, but it is nothing like months upon months of bad sleep with no break. I am very happy to say we are improving in sleep!!! In spite of the sleep study and surgery he endured this year to help with his sleep, I do not think either one helped. Nor do I think his medicine really helps. In my honest opinion, it is just him getting a little older and him learning how to deal with his body better.

Another great achievement of 2013 was the beginning of our long lengthy process of picture exchange communication. I say beginning because we are no where near being successful with this but we have introduced it and he is  learning it.  We may be successful once a week or twice a week. For that reason, this is a huge deal for us and I am excited to see how much we will improve in 2014.  We use a picture exchange on his iPad. Thankfully, his iPad was given to us from a great organization. The iPad has offered Trenton many opportunities! Alongside the picture exchange communication, we are also using a picture scheduler with Trenton. I love this! This may be my favorite form of communication with him. On his scheduler, I have a picture for everything that Trenton will do throughout the day. Before we transition from one event to the other, I show him what is next on our schedule. For example, when I pick Trenton up from school and put him in my car, before we leave the parking lot I show him where we are going. This helps him with his transition problems. He understands with pictures and not so much words. If I would say, " We are going to Effingham for some ABA with Heather." He would not retain any of it. He needs a picture to understand. I will post pictures of his scheduler at a late date when I am not so tired.

Trenton still remains non-verbal. In a structured setting, if asked "What is this?" while pointing to a circle, he will say "circle". As far as functional speech, he is non-verbal. He will say hi and bye on most occasions, especially if I tell him too. He will go through phases where he will say "help" when he actually needs help. Nonetheless those situations are few and far between. Majority of the time, I still get the "noise" for help. If I tell him to say help, he may or he may not.  This is my area that I would have liked to make bigger gains in 2013. I want more than anything for him to talk and communicate. It has taken a lot of  blood, sweat, and tears in 2013 in the area of expressive and receptive language. I hope our blood, sweat, and tears will pay off one day and my non verbal Trenton will be talking my leg off and understanding every word of it!!!

I look forward to what 2014 will bring Trenton but at the same time I am sad to see another year go. As I get older, the years fly by and my boys continue to grow. These years may just be our easiest years. Unfortunately, the statistics state that children affected by autism to the degree that Trenton are, very rarely live on their own and will be dependent on family, disability homes, etc. With that said, these years are the easiest years and they are no where close to being easy.  When many families celebrate their child turning 18 during his senior year of high and start making college plans........well....families like ours have to hire an attorney and start the legal paperwork to get legal guardianship over our own son. I have been told this is an expensive, emotionally draining process.  I have no doubt that that is true.

I have been told over time the grieving process gets better. I'm not sure I believe this. It's been almost two years since I knew Trenton was "different". I grieve just as much today as I did then. I always will. My child that was placed on my chest at birth who was perfect and normal (so we  thought) died to autism. Autism left us his beautiful shell. Autism took over his body. Unlike families who have buried a child, we have no grave to go and mourn the death of that normal child that we lost. The pain hurts just as bad as if I physically buried him. I thank the family and friends who have realized this and who have helped us along this grieving process. Every single mother of a child with autism or a child with special needs who had their "normal' child at one point in their life has agreed and said these words them self. Unfortunately, since our children look normal and can run around, in most circumstances, we are not understood. That is so sad! That is why we form our own family and make friends who understand and walk the same path. If we don't have each other, than we feel totally alone while the world keeps going on. We are forced into survival mode. Survival mode is not really living. It's being here, walking around, tending to your duties and doing what you have to do to survive. We are stuck in survival mode until the day we die. With that said, every mom of a special needs child fears their own death. After all, we have a very special person depending on us. More so than most can imagine.

I pray we make big gains in 2014. I will continue to shed blood, sweat, and tears daily in order for Trenton to be the best he can be one day. I am so ever thankful God trusted him to me. Trenton is the most amazing person and I am SO LUCKY to be his Mommy!!! I would not trade him and the life we live due to his disability for anything! Yes, this road stinks but we appreciate a lot more and celebrate the tiniest of accomplishment where most families those accomplishments would have gone unseen. 

Trenton-
You are my inspiration in this life! You keep me going. You are my angel indisguise and I am so lucky to call myself your Mommy! I am so proud of you and everything that you have accomplished this year. You are such a hard worker! I know you don't know this but you have impacted so many people and have changed so many people. You are truly leaving your mark on this world!!
I will continue to dedicate the rest of my life to you! God is with you and I every step of the way. He wraps his arms around us every day and helps us. I know this Bubba!! I feel him working his power through you. You are making great gains and I know we will make lots of gains throughout the next year.
I love you so much Bubba!!!!!
Always and Forever!

Andrew-
You are another inspiration to me! You are an amazing brother to Trenton already. You go through so much living with Trenton and I appreciate all you do for your brother.
I pray the both of you will love each other and have a special bond as you get older. Andrew please stay strong on this journey! I know it is hard but stay strong! I am here for you any time and I know you know that! I am so blessed to have you call me Mommy! I am so lucky and honored to be your Mommy.  God knew what he was doing when he placed us together!! I love you Bubbie!!!

I will close with a few scriptures that help me get through my days.I firmly believe that God give me the strength I have each day. I firmly believe he gives everyone the strength they need in this life, if they are faithful followers of Christ.

Philippians 4:13

 I can do all things through Christ who strengthens me.

Romans 8:28

 And we know that all things work together for good to them that love God, to them who are the called according to his purpose.

 

Proverbs 3:5-6

 Trust in the Lord with all thine heart; and lean not unto thine own understanding.
In all thy ways acknowledge him, and he shall direct thy paths.

Psalm 46:1

46 God is our refuge and strength, a very present help in trouble.



No comments:

Post a Comment