Saturday, December 31, 2016

Goodbye 2016, Hello 2017

Wow, what a year!! Of course we have had ups and downs but the boys and I have accomplished some pretty amazing things this year.

First of all, this year has been a growing year for me in many ways. At the end of 2015, I started running. I forced myself to make time for me and I chose to use that time to run. Trenton finally let me get a good four to five hours of sleep at night so I actually had some energy to put a foot in front of the other one so I decided to run. (It's amazing how good four or five hours of sleep every night feels after you have lived through years of one or two hours of broken sleep every night.)
 Whew! So glad I did. I love it! It has been a blessing to me in many ways. I finally lost the weight that my body gained from the years of sleep deprivation and stress. Running and exercising is very good for a person's health. I found out in 2016 how crucial it was for my health and the issues that I started to have. So, as of now, 2016 made me a dedicated runner:)

I have met some amazing autism families this year. My blog and book has led me to some of the most extraordinary people. I would have never met them if it wasn't for my advocating work. I am forever thankful for the road that God is leading me on.

Trenton and I achieved the hardest task that we have ever tackled yet and that was potty training! As I have said before, it was a brutal 16-18 months but we did it! We accomplished it! Consistency, battling through the autism challenges and not giving up is crucial and we did it!!! I have not been any prouder in my life than I was, and still am, of Trenton with this accomplishment. To top it off, since our last medicine change, he is getting very good at going number 2 in the potty, too!

Trenton has made progress this year but it is slow and it will always be slow. If you look at it as a whole, he has been in therapies since he was 18 months old. His use of spontaneous words is very few BUT it's better than it was over 4.5 years ago when we first started therapy.  We have to look at the positive side. Our gains and accomplishments are very tiny but they are huge because it takes us a very long time to reach what we do. We have to be consistent, rigid, maintain same routine, and have lots of patience. When you maintain these, it is amazing the things that you can accomplish over a long period of time. It takes a long time, but without the consistency, strict routine, and patience-you don't accomplish what you should.

Trenton has grown in his ability to go out in public this past year. Again, he is slowly getting there. A year ago he wouldn't go into McDonald's for more than one minute. Now, he will sit in there for a good ten minutes at least.  This is small yes....but its huge for us!
Of course he has grown in many other abilities but these are the ones that I hold so close and dear to my heart because I know  EXACTLY what we have went through to reach these and it wasn't pretty!

Andrew has had many challenges this year. He has a lot of emotional/anxiety challenges. This was in full force for the first six months of this year while he was adjusting to the divorce. I don't speak about what I went through with Andrew very often, but it was very emotionally heartbreaking and it left a forever scar on my heart. However, he has worked through his emotions and is doing much better.

Andrew completed his one on one ABA program this year! That was our biggest accomplishment with him!! I am so proud of him. He will be starting at Harsha Autism Center again but his training will not be the intense one on one. It will be more focused on social/learning settings.

As a family of three, we have grown a lot! We have an amazing routine down that I don't bend much on (just ask our close family members. HA!) and I couldn't be prouder of the boys. Life is going smoothly! More smoothly than it ever has but with autism things take time and we are finally seeing some of that this year!

This year proves just how important consistency and routine is crucial to our accomplishments and to our learning experiences.

May the blessings of 2017 be wonderful to you! I pray that in 2017 things keep looking up for us!!

Wednesday, December 28, 2016

Reindeer

The daily struggles of a child who can't communicate is very hard, emotionally draining, and heartbreaking. It is hard on everyone who lives in the house and lives the journey daily.

The other day Trenton kept taking me by my hand and leading me all over the house saying what sounded like "bear". I figured he was looking for one of his "bear "animals. I looked and looked all over the house and I couldn't find a "bear"animal that he wanted.  Therefore, I kept wondering if my mind was on the right track. Did he want a stuffed bear animal? Did he want one of his figurine bear animals or one of his wooden bear figures? Did he want me to cut out bear animals from a coloring book (He likes to cut out animal figures from an animal coloring book.) I just kept trying to rack my brain on what kind of bear he wanted. Sadly, we worked on this all morning and I could never figure it out.

He led me by my hand all over our house. I occasionally stopped him and looked him in his eyes and told him over and over, "Trenton I don't know what or where the bear is that you want." Thankfully, he never once had a meltdown or tantrum and that behavior is very likely of him. Instead he just looked at me with the saddest look on his face and kept leading me around the house saying bear.

When  I got in my van that afternoon I saw one of Trenton's animals in the van and it wasn't a bear, it was a reindeer which he calls deer. I sat in the drivers seat of the van, picked up his "deer" and my eyes filled up with tears. I knew instantly that he was saying "deer" and not "bear". How terrible it must feel to be Trenton and not able to elaborate what he wants. I am very thankful that he is able to say a single word like deer. However, we are a very long way, if ever, of him being able to describe what he wants such as "my stuffed deer animal".

As a mother I felt terrible. I should have figured it out after awhile that maybe it was his deer he was wanting after not one bear was making him happy.  I felt terrible that my child has to live his entire life like this every single day. Every single day he isn't able to communicate what he wants or needs. I just can't fathom! I know how frustrating and sad I get trying to figure it out, I just can't imagine what it is like to be him.

This isn't the first time where something like this happened and it wont' be the last. I witness and am a part of these kinds of struggles and challenges every single day. As I have mentioned before, living and taking care of a dependent 24/7 and someone who will always be a dependent is an eye opener. Watching Trenton struggle sure has made me realize how thankful and blessed I am in my life. I think we all have taken so much for granted in our lives. Many continue to do so until the day they die. I am very thankful that l have allowed my boys to show me and teach me about the true meaning of life's blessings and to never take one moment for granted.



Monday, December 26, 2016

Resource

I am very honored that my blog is featured in this book as a resource:) God is leading me on an amazing path!
Cover Image

Sunday, December 25, 2016

Merry Christmas!

We had a wonderful, low-key Christmas which is exactly what the boys need!

Merry Christmas everyone!


 Four generations! The two generations above me have been the most influential people in the boys and I life! They are true examples of Godly people!
 Andrew grabbed Trenton's hand all by himself!!! They melt my heart daily. They love each other so much and Andrew really does watch out for his T-man!
 My Grandma! The boys and I love her and Grandpa so much! We wouldn't be where we are today without them.


Thursday, December 22, 2016

Senstive Santa

I am so grateful that a local small mall in my town had a "Sensitive Santa" for kids on the spectrum and other disabilities. SO THANKFUL!! It was one of the most amazing experiences. It was in a very quiet mall. The Santa was set up in room away from all the mall noise. The time was blocked out for special needs families only! WOW!! I recall last year walking into the big, noisy mall trying to get the boys to see Santa and the line was long, way too much stimulation going on with music and lights. Trenton started throwing himself down on the ground. I had to constantly redirect him while he was crying......but this year....so different!

This Santa was amazing! He talked to Trenton in such a very quiet, soothing voice. It was obvious he knew about autism. The photographers who took the picture were fantastic. It was very obvious they knew about autism as well. The whole experience was exactly what I needed! To top it all off, it was free of charge to families like ours and it came with a free picture!!  This doesn't happen every day and I am so grateful! The cost of raising special needs children is highway robbery these days, especially for a one parent family.  Therefore, a gift such as a free entry to see Santa and a free picture means a lot!

Honestly, I held back my tears until I got in the car and then I cried. Something that typical families do was made possible for us because of special accommodations. That is exactly what special needs and autism families need. We just need special accommodations to make things possible for us.
Thank you so much to everyone who made this possible today. You simply made our Christmas a little brighter this year;)

Wednesday, December 21, 2016

IEP

I really wish I had more time to blog and share my journey and my knowledge of special education. I have failed lately on educating and helping others on their special needs journey to understand special education. In case you are unaware, special education is what my degree is in. Anyway, here is a short post on some quick facts to know before you attend your child's meeting.

I found while I was student teaching and teaching that many parents who have children in special education don't simply understand special education nor do they know their rights. They often appear to be intimidated and leave it all up their child's teacher and therapist. Therefore, I want to try to do my best from time to time to share a little information for you in hopes to help you.

The IEP (Individualized Education Plan) meeting is typically led by the school administrator in special education. It can be led by others such as the principal or teacher. Most IEP meetings begin with introductions before you dive into the meeting.

I am very thankful for the Individual Disability Education Act (IDEA). This recognizes that each child's needs are unique. For example, if you can show that your child needs a specific service, such as a one on one aide, then the law requires it. A child's needs, not the cost, should dictate all IEP decisions. Sometimes you might have to watch for an administrator to indirectly avoid a service. Therefore, you need to know when it is appropriate to fight an issue and when it isn't.  I highly recommend to fight for the crucial issues and to be more flexible with other issues. You as the parent know which issues are more crucial for your child.

During the meeting someone from the school will write the IEP plan as the meeting progresses. Your child's IEP should included
  • child's current levels of academic and functional performance
  • how child's disability affects his or her involvement and progress in  the general curriculum
  • measurable annuals goals
  • description of how your child's progress towards their goals will be measured
  • When and how their goals will be measured
  • accommodations your child may need when taking state or other test
  • A transition plan if your child is 16 or older
  • supplementary aids and services your child will receive.
  • Program modifications for your child
Also during the IEP meeting, someone from the school will go over your child's evaluation.

I can't emphasize enough to ask questions if you don't understand something. Make sure you participate and agree with all the goals that are written in the IEP. You have to agree with everything that is wrote in the IEP. Be an active, involved parent. It will only benefit your child greatly!



Sunday, December 18, 2016

Andrew

On the way to church this morning, Andrew said "Moochies, I wish we could go to church every day. I like to make God happy."

Little did he know he made my day by saying that!! Love it!!!!

Trials Produce Strength

James 1:12   
Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him

I try daily to remind myself that the more trials that are handed to us, the stronger I get in almost every aspect of my life. I have my weak moments for sure but overall I see the strength that the Lord is giving me. I beg him for it daily. I seek it out. I seek His word out even more daily to help me to find the answers. I seek daily to find the answers of why things keep happening to us. Yet, it could always be worse. I know this!


A huge fear of special needs parents is if something happens to them or when their health fails, who will take care of their child/ren. It's a laughing but serious joke among special needs parents is that we want to live to be over a 100.  Yet, life happens. We have no control over what happens to us or to our children. It's God's story and we just have to live  the role that he gave us.


I have came a long way in my life. At a time in my life I questioned a lot of things....such as why I had to have some major health problems at the age of 19....why was my friends and I involved in an accident at the age of 19.....why did I have to have a miscarriage...why did my firstborn son have to have severe autism. However, I have learned so much from these trials and much more from many other trials in life. I have learned to find what God was trying to tell me or what he was trying to prepare me for. By the time Andrew had problems and by the time I found out about other things that was happening in life that led to a divorce, I was in a much better place and handled things much differently. I did because I learned so much in life along the way.  I didn't see the good out of my trials right away. I don't think God expects you to. He wants to see the endurance that you have to stick with the situation, he wants to see your heart, and he wants to see if you can find the good and the meaning behind it all.

Whether it is your personal trial or a loved one's trial, I encourage you to look and see what God is wanting you to do. What is He trying to tell you? What does He want you to do? What is your role? What is He trying to tell you?


Romans 5:3   
More than that, we rejoice in our sufferings, knowing that suffering produces endurance,

Wednesday, December 14, 2016

Why I Use Medicine

In my book, Two Brothers One Journey: The Loving, Courageous Struggles of an Autism Mom, I discuss briefly medications. In a nutshell, I wanted to make the parents of a child with autism to know that medicine is an option to help your child on their journey.  I want to discuss a little more in detail on how medicine has helped Trenton and I.

When Trenton is not on medicine or when his medicine needs adjusted, there is a huge difference in Trenton. I have learned some great things from the boys' doctors over the years. One being that children like Trenton often get used to their medicine. Their bodies adjust to the medicine and eventually it doesn't work or doesn't work as well. This happens to neurotypical people as well, but it happens faster to children who are simply "wired" differently and that have a whole different chemical make up than neurotpyical people do. Therefore, adjustments have to made often.

When an adjustment to his list of medicines need to be made, it is very obvious in Trenton's behavior. Trenton becomes uncontrollable 24/7 and is at a higher risk of hurting himself and/or others through his maladaptive behaviors.  He displays erratic and impulsive behavior. If he doesn't have someone right by his side, he is unable to listen to or follow directions as well. While on the right medication, his brain is much like an organized filing cabinet. When his medicines need adjustments, it's as if his filing cabinet is hit by a tornado and all of his files are laying scattered all over the place and he is unable to do the smallest of tasks because his brain is a mess. He doesn't sleep as well. He can't tolerate short trips to stores or McDonald's.  He has more potty accidents. In fact, Trenton was finally successfully potty trained with pee when he finally got on the right list of medicines!

So, yes in our life, medicine is a huge help for us. It really makes a world of difference. I get asked often by other parents for my opinion on this. In some people with autism, I don't think they need medicine, but in some cases I do believe they need it. It is entirely up to you. It doesn't hurt to try and to see if it helps. Putting your child on medicine to help their challenges with autism is no different than a person taking medicine to help their high blood pressure or to help a headache.


Sunday, December 11, 2016

I. Love. You

I've been very proud of T-man lately. He has had fewer potty accidents with both if you know what I mean:)
At one point this weekend when he had a number two accident in his pants, I took him to the bathroom and cleaned him up like I always do. When we were all done we went to this room to get on some underwear and pants. As I was getting his underwear out of the drawer he started clapping and smiled great big and shouted. " I. Love. You." and just kept smiling and clapping.

I had not said it to him so he didn't repeat it. However, I do feel like it was his way of thanking me for cleaning him up and taking care of him. It brought instant tears and an instant smile to my face.
He is so smart. I just know he says stuff all the time in his head, it just can't come out. Moments like these make all the sacrifice worth it.

Life is hard. Some days are harder than others. It is so easy to get frustrated and long for a better life. However, moments like I had earlier this weekend just simply make everything better. Its the gas for my engine to keep moving. I feel so blessed to have had that moment. Every time I hear him say it spontaneously is a miracle. It is proof of our hard work and sacrifice since he started therapies at 18 months of age. It is simply a miracle that I get to witness and be a part of from time to time.
It might mean something more today than it did the last time he did it a few months ago because he and I have had it very rough lately. It was simply the best "early" Christmas gift that he could have given me:)


He also has done some pretend play and imitating lately. YAY!!!


He wanted to feed all of his friends at once:)

The pretend play and imitating came from a video that he watched. It only lasted a few minutes but it was the closest that he had came to playing with anything in a very long time at home!!!!!!!!!!!

Sunday, December 4, 2016

15 Steps Back

So, I've been on a break from blogging for while now. I still don't intend to blog as much as I did before. However,  I do plan on posting here and there for our fantastic, loyal supporters:)

You can basically say I have been on this journey of autism for almost 6.5 years. Trenton is almost 6 1/2 years old and was a difficult baby from the beginning and I always had to do things for him that went against the "typical" parenting of a baby/toddler/child.

When all you know is one certain way, you get accustomed to it. It is your normal! For example, I don't know what a normal 6 1/2 years old child does. I don't really think about it but when I am with typical children Trenton's age, I am flabbergasted! Sometimes it feels like I get suddenly slapped in the face with a reality check.

Wowsers!So that is what life could be like? And I thought things have been good for me the past year?!?! WOW!!...words like that get tossed around in my head.

When a parent of a child with autism says, "It's a roller coaster ride."...well please believe them because it is! You can be going up with everything and feel like you are on top of the world and then you suddenly drop all the way to the bottom and everything that you have worked so hard to achieve takes a huge nosedive. It's like going five steps forward and you wake up one day and you are 15 steps behind where you were the day before. When you wake up fifteen steps back you realize it is not just your child's disability that has brought you where you are, its also other life situations....other situations that arise such as your own personal health that has taken a decline and the answers you get told over and over from the doctors are, "Stress has caused this. Prolong stress takes a toll on every body organ when it is continual stress.  It's the stress that is aging you. It's the stress that is making ________ happen."
 All I have to say back is...it has been over six years of sacrifice and taking care of dependent 24/7 that will always be a dependent....how do I get away from stress?!?! Oh and I am a single mother of another child too...the stress...it's always there because I want their life better!

Also, on that day you woke up fifteen steps behind where you were, you also find out that certain people come into your life and then they run away quicker than they entered because of the trials.

Trials. That is what life is about. Some have more in life than others. Some peoples trials are quick and then they are healed and moved on with life. Some are life changing trials. Some life changing trials happen later in life and some happen early in life. Some trials are so hard for others to even fathom.

God's plans are not always our plans. They seem confusing, disappointing, and frustrating to some at times. But God's plans are always better, always bigger, always longer-lasting. God wants to see what is in our hearts. Understanding God's plan takes time. It doesn't happen over night. I have been praying and trying to understand God's plan for the boys and I for a long time ago. I have no doubt God picked me for this role in life because he knew I wouldn't give up. He knew I would sacrifice every square inch of everything I got for T-man. Sacrifice....it's what Godly people have to do. Sacrifice is what we have to do to get the bigger and better gift in the end. 

Our life isn't really our life. It's God's life to us. It's the role he chose for us to live in this beautiful world that he created. Therefore, it doesn't matter how many steps back in our life we take from time to time. The trials are never-ending and they will always be there for some people. It is part of the rollercoaster ride.

I find myself wondering at times what kind of person I would be if it wasn't for the trials. I truly do believe that everyone is faced with a trial in their life to test their character...to test their heart. God loves our hearts more than he loves anything else about us. I wonder if I passed up on trials earlier in my life? HMMM....makes me think.....

All in all, its been a rough patch and I choose to keep it to myself on the specifics. Trenton went to the doctor last week so hopefully we are on the road to getting him what he needs because that is what it is all about....Trenton...he is the one with the real big trials. It is all about T-man!!

In case you missed our smiling faces...here ya go! We still know how to smile behind our trials because we have God on our side. He helps us through and has led us to some amazing places so far on our journey. I am looking forward to see what the good Lord has in store for us in the future.