Sunday, July 30, 2017

AAC Device

I am so thankful for Trenton's AAC device! It sure took a long time but it was worth it! Overall he seems to be more vocal with his device. Several people who work with him have even noticed it. In the picture below he was at his favorite pizza restaurant. As soon as we sat down he told me on his device that he wanted, "pizza and salad."
In this picture he was typing out different words before speech therapy the other day.
Twice this week he said, "Nana and Pop". He has never spontaneously said their names together. Today at church he told the lady who takes care of him during the sermon, "see Mommy" and I believe he also typed it out.
Tonight when I said that it was bath time. He did the sign language for "bath". I haven't seen him do that in a long time.

One form of communication often brings out other forms of communication. Many times Trenton would be in my kitchen looking for food but he couldn't find the words to tell me. Now, he goes to his device and finds the picture and says the word!! I am SOOOOO HAPPY AND PROUD OF HIM!!!! He is one happy kid with his device!!!
All praise to the good Lord to making this happen for us!

Thursday, July 27, 2017

My Boys

My Boys! My World!


Lamp Words For Life

I have had a few questions about what system Trenton uses on his AAC device. His device has the LAMP Words for Life system. This system allows the vocabulary to grow and the communication skills to grow in way that doesn't require re-learning. It provides a consistent motor pattern for words and a systematic way to develop communication skills allowing for unlimited language growth opportunities.... Basically, how a keyboard is for us, this device will be that way for Trenton!

Trenton and I are both still learning this system and we will be for awhile. However, he just LOVES his AAC device and is growing with it each and every day!
In the picture below he is showing off his AAC device while out in the community with one of his ABA therapist!

Tuesday, July 25, 2017

Joy

A few weeks ago, my preacher mentioned in his sermon how it seems like in life that good things happen to bad people and bad things happen to good people all the time. I know we all have thought this before. I have thought it numerous times. I could list numerous bad, life changing things that have happened to some of the best people in this world. At times, we look at others and wonder why they get all good things and never go through any trials. It is life and it is human nature to think this way. However, my preacher mentioned in his sermon that good things happen to bad people because God loves them too! God loves everyone and he shows everyone his love. It just really hit home with me on how true that statement really is. God blesses us all with good things and sometimes it may seem that all the wrong people get the really great things in life but it is simply because God loves everyone!

At times it often seems like that some of the strongest, Godly people go through some of the hardest trials in life. Why? God loves us too just like he loves the lost.
I often think it is because God knows we are strong enough to battle the battle. He knows that we will find the joy and hope during our hard times.
Through the numerous difficult situations in my life, God knew I would still live a life of joy, even in the midst of all of the trials, including autism.  Joy isn't simply smiling at the world, its a state of being and the act of serving God.  Joy allows us to rise above our trials.
Joy is a gift.

Galatians 5:22 But the fruit of the Spirit is love, joy, peace, longsuffering, gentleness, goodness, faith

We all have joy, if we have Christ. God wants us to have a life full of joy
We can have joy even in the midst of autism. If we have Christ in us, then we will have a life of joy and see the beauty that autism and/or any other trials you live with can bring to you.

Even though it is hard, I am very thankful for my trials in life because it has made me stronger. I live my life daily doing my best to find the joy in our daily life. The burden I carry....the hurt I feel daily knowing I will close my eyes in death leaving behind a child with  a severe disability is something I would not wish upon anyone. Its a life of hurt and guilt. We all want what is best for our children. We all want our children to grow up and live independent lives. However, many families aren't able to have that because we are raising  children with severe needs.
Yet, what good is my life if I dwell in my own self pity? It's not good at all. Therefore, we take our trials and tribulations and do the best we can with them and we can't do that without finding the joy in our lives.

Just as Christ laid down his life for us, parents of special needs children come very close to understanding the heart of Christ. Most special needs parents would lay down our lives to make our children's lives better.  There is nothing greater than that kind of joy and love!

Nehemiah 8:10
Then he said unto them, Go your way, eat the fat, and drink the sweet, and send portions unto them for whom nothing is prepared: for this day is holy unto our Lord: neither be ye sorry; for the joy of the Lord is your strength

The joy of the Lord is my strength and He gives me all the strength I need to find my joy!!

It's hard one some days but I encourage you to find the joy in your trials. Ask God to help you with that and he will answer that prayer for you!

Special Education Post 1

In the spring of 2016 I did a special education series. I thought I would try my best to do another special education series since it is back to school time:)
I receive messages from time to time from parents asking me questions about their child and the special education program. Therefore, in this post I want to concentrate on some of the most basic principles of special education. Hopefully, if you have a child that is in special education or who will be evaluated for special education, you find something in here helpful.

Every school district hast he legal responsibility to identify, locate, and evaluate children who may be in need of special education.
Individuals with Disability Education Act (IDEA) was first enacted in 1975 because public schools were ignoring  children with disabilities or shunting them off to other programs.  IDEA has a list of disabilities that fall in the regulations and autism is one of them. For your child to qualify for special education services, your child needs more than a diagnosis.  There must be evidence that your child's disability adversely affects his or her education.  Therefore, your child has a right to an evaluation by a psychologist that works in the school district. An important note to make note of is that the school district will not take a diagnosis from outside sources. It has to be done specifically through the psychologist that works in the school district. If you are new and entering the school systems this year please know that if you child has an autism diagnosis from an outside source, it won't qualify your child for services. You have to go through the school district.

If your child is evaluated by the team of professions, a meeting will be held, called the IEP, to figure out the correct placement of your child and education program. IEP stands for Individualized Education Program. Every child who qualifies for this has a right to an individualized education plan that best meets their needs. No part of an IEP can be implemented without the parents approval.
A school district can not force anything on your child, the parents have the ultimate choice in your child's education process as to the type of classroom and how their education plan will go.


IDEA states that your child should be in regular classroom unless the child cannot be educated satisfactorily there, even with the use of supplements and aids and services.  Although it is recommended that every child be educated in a regular classroom, it is necessary that some children's disabilities are too severe and require to be in a self contained special education classroom.

Your child may just need some support services such as occupational, therapeutic, physical therapy, etc. The school districts provide various services in this area. You can also receives assistive technology and transition services for your child as well.

A great thing that IDEA provides is the right for your child to be placed in a nonprofit or private school if your school district cannot provide an appropriate program. This may be hard to fight and win through the school district. However, if you are proactive and have all of your documentations together, you can get your child in the correct private school somewhere that meets their needs more appropriately than the school district.

If you have a child who has severe needs, I would contact the school district before school even starts to get an evaluation done on your child and an IEP set in place to start the school year off right. I did this for Trenton and started on it the past spring and we had our final meeting this summer. His IEP is set and ready to go on his first day of school. Being a former special education teacher, you can betcha that I will make sure it gets followed to the T!! (A parents needs to be active in their child's education and ensure that their child's teacher is following the IEP and giving your child exactly what they need.) Children with disabilities have a right to an education that meets their needs just like a typical child does.

Stay tuned for more special education post. Please let me know if you have any questions or any suggestions that you would like a post on. There is a lot of information in the special education world and I know it can be very overwhelming at times.
   

Wednesday, July 19, 2017

dvds

Trenton is doing an amazing job lately carrying around his AAC device. (It's in the black bag that is around his shoulders.) I was nervous he would be really rough with it but he is doing much better than what I thought!
Today I went with him and his team of therapist to the library for story time. It was a rough time for him at the library today. He was fixated on the dvd section instead of story time with the librarian. Therefore, it lead to some upset noises and some maladaptive behaviors. At one time during story time he spelled "dvds" out on his AAC device to let us know that he wanted to go look at the dvd section. That was huge!!! I was so proud of him! For those of you that don't know, Trenton has a huge fetish with dvds.

Tuesday, July 18, 2017

Reassurance

There is a lot of doubt that goes into parenting a child like Trenton who is unable to communicate. Of course there is all kinds of other emotions as well. However, one that I struggle with daily is wondering what Trenton feels towards me. I know deep down that he loves me and loves me to the best of his ability. Yet, I find myself doubting that. I find myself wondering if he really does. After all, he does not come up to me like typical kids can and tells me he loves me. He rarely looks at me or acknowledges me around the house like typical kids do. There is not any, "Oh thank you mom, you are the best." moments like I get from Andrew. He lives in his bubble and I do my best to live in it with him. However, God made me the way I am and I long for those moments that most parents receive.

One of the top situations that is difficult to deal with daily is when Trenton is crying and I don't know what is wrong. However, there are moments when I am not around him that he cries his sad cry and says my name numerous times. Sometimes when I pick him up from Harsha Autism Center and they tell me that he had a day where he cried and said my name several times, of course I am saddened. However, there is a part of me that is jumping for joy because it shows me that he loves me and wants me! He misses me and needs me!!!That is the only time I am reassured that he needs me, wants me, and loves me is when he cries for me when I am not around.

He has had several of those moments the past few weeks. Some have been at therapy and some have been when he is with someone else when I am not around. It breaks my heart and makes my stomach turn because he is unable to communicate. I get a sick feeling when is upset because he has so many trials in this life I don't want to see or hear of him being like that. Yet, he wants me, his mom, and is saying my name and that makes my heart so happy!!! Him and I have been through everything together. I am the ONLY person who really knows what he has been through. I am the ONLY person who really knows him. To be truthful, I feel so blessed and honored that he wants me when times are hard because he can't tell me daily. He knows that it's been me that has been with him through every waking trial. He knows....yet I doubt that at times. So when he cries and says my name when I am not around, I do find some reassurance in it.


Sunday, July 16, 2017

Andrew & Alee

It didn't take these two long to form a great relationship. They are seriously like brother and sister!

Thursday, July 13, 2017

Swim Lessons

We have done swim lessons for three years now. Andrew still can't swim. He is a very slow learner in this area. He can't learn from groups due to his issues. Therefore, one on one is the best for him. So this year marks three years of one on one swim lessons and our progress is very slow. On some days, he does okay and other days he is deathly afraid of the water. He tells his instructor that he went under the water one time and is afraid of water now and thinks he is going to drown. He is very afraid of water I have to say. My goal is to get him to swim, we all need to know how to swim because we never know when we may need to use that ability. Three years of expensive swim lessons but we will do what we need to!
Needless to say, our Thursdays are spent in swim lessons!

Tuesday, July 11, 2017

Eyes

Even though things have been good lately, which I bragged about in an earlier post, it still doesn't mean they are great by any means. Trenton still lives with challenges daily and we arrange our life around those challenges.

Every single day I wake up with this little boy. Every single day I take him to his therapy and participate in his community outings. I sit in their IEP meetings. I sit in their therapy meetings. I revolve my life around doing what is best for my boys. I make decisions I don't want to make but I do it because of the challenges Trenton lives with. God gave me this amazing child and I don't think he would ever want me to make  decision on what is best for me instead of what is best for my child.

The sacrifices we make as a family are hard but they are worth it. Being  a single mother of two boys with challenges will always come with sacrifice. Being single makes it that much more difficult plus  living in a town with no family makes it even harder. Yet, God is always providing for us and we are doing great.

What tears at my heart strings the most is when Trenton has days where he walks around crying. It's the type of cry that I know something is wrong but he can't tell me. Yes, he has an AAC device now but we are a long way of using it for that type of communication. The other day his therapist told me that he walked around therapy crying and saying, "eyes". He has done this multiple times for me at home too. 

What is he trying to tell me? Does he have a headache? Is his vision blurry? If his vision is blurry, how could we ever be able to know this because he can't tell us? He isn't able to do a vision test. Many children on the spectrum have eye problems. Is this happening with him? How will I ever be able to know?

So yes, things are getting better but we still have our challenges every single day and always will.

This is just one small example of our daily challenges. It's not just a challenge but it's a very heart-rending challenge. It breaks my heart into a million pieces and I only survive through my love for the Lord.

Romans 5: 3 And not only so, but we glory in tribulations also: knowing that tribulation worketh patience;
4 And patience, experience; and experience, hope:

5 And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.


Saturday, July 8, 2017

Gracie

As most of you know, there was a month long fundraiser for Trenton this past spring. The fundraiser was done in hopes to raise enough money to get him a service dog. The fundraiser was a huge success and enough money was raised to get Trenton a service dog. Again, thank you to everyone who helped make this possible. Most of all, I praise the good Lord for making this possible and always taking care of the boys and I.

Trenton's dog is in training. I heard from the trainer this week and all things are going well!! We found out that the dog picked for him was a girl. So the boys and I decided to name her, Gracie. We picked Gracie because Grace means goodness and generosity. We were shown such amazing generosity and goodness from everyone to make this happen. God's grace is unmerited favor and we are shown that every single day. Therefore, I didn't think there was any better name other than, Gracie.

Again, thank you to everyone to helped make this dream come true. Here is a sneak peak picture of our Gracie in training.


That is all I know for now. It is a long process to train a service dog so when I have more information, I will share.

Wednesday, July 5, 2017

Trenton Update

I need to brag about my T-man for a few minutes! This amazing child of mine is just unbelievable. I see the amazing works of God in him right before my eyes every single day.

I often think back what life was like when Trenton was a baby/toddler. If someone offered me money to pay off all of my debt to relive the first five years of Trenton's life over again, I would turn it down! There are few words to describe  what life was like and no one could ever begin to understand unless you are a parent of a child with classic non-verbal autism.

If you have followed my blog for awhile you know that Trenton never slept. I got about two hours of sleep every 24 hours. He cried and we battled meltdowns, some very dangerous meltdowns that involved breaking glass and running arms through glass windows. I could not take him anywhere. He would go into McDonalds or a simple store screaming and crying, and sometimes kicking and clinging on to the door to not go in. If I manage to get him in, he was unmanageable in the store. It was a success if we lasted one full minute.

He used to scream bloody murder when I would try to give him a bath. He used to have to swing in a special swing for hours upon hours in the middle of the night to meet his sensory needs. I have went to major hospitals and getting him into specialist of all kinds to try to help him. I spent every penny I had on all these communication apps, sensory processing disorder items, special items he needed, special supplements, etc to help him.  We have been through major battles of the war on autism but we are finally getting to where our battles are smaller. I can't even begin to tell you how amazing it feels! Yes we still have our moments and have bad days. Yes, I still battle small meltdowns,  sleepless nights, and all the things mentioned above but it is much less these days.

Trenton used to NEVER smile. Now I see him smile every single day! He will be seven next month and finally after almost 7 years of hard work, 5 1/2 years of nothing but therapy, I am seeing progress!! His progress is small and doesn't compare to a typical child but it is huge for our autism family!

I remember the days when the tears would roll down my face......tears of sadness, tears of frustration, tears of guilt, tears of hurt, and tears of joy. I have always found the joy that is mixed in all the other types of feelings that come with raising a child with autism.  It is hard and especially in the early days it is very hard. However, God guides us on how to handle the issues that arise in our life.
Even though it is hard, we are always suppose to be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12) . Through my affliction in life and especially since my autism years, I have leaned on hope and prayer! In the book of James we are told blessed be the one who perseveres under trial. (James 1:12)

I remember many days and nights when it was hard to see the hope and hard to keep on going. However, our perseverance is starting to pay off!

This morning I went with the boys and some techs from the Harsha Autism Center (HAC) to the local library to enjoy their story time hour and Trenton did great! Andrew had his issues there too but we will discuss him on a later post.
 Of course, Trenton made his noises, stood up at times, fidgeted,  and had to move around, but for a boy who couldn't even walk into a place like this two years ago, this is amazing progress! He lasted 30 minutes in the story time hour. I am so proud of him!
He just keeps on getting better with me to go places in the community. Of course, it is still tough and nothing like a typical child experience but he is doing great! I can't wait to get our service dog because it will make it all that much better!!!

I could do more with him on some days but as autism families, we have to pick and choose our battles because nothing comes without consequences, even if it is a good experience. often times the consequences comes later and I have to mentally prepare myself for the sensory overload aftermath.

He continues to be sleeping well at night!! WOOT WOOT!!!!

One of the best things for him is to follow his daily routine and schedule. This helps keep his brain organized and makes things better for him. I could go on and on about how great Trenton has been lately. I couldn't be prouder of him. Each day I see all of our hard work paying off and it just makes my heart so happy!! It makes all the days we have to be out the door by 730 AM, worth it!! It makes all the battles I go through daily as a single mom completely worth it!!

It hasn't been easy but I wouldn't trade this life for anything! God sure did give me an amazing little guy/angel to raise. Through him I see and witness the amazing works of our God. I see and understand scripture much better now. He is truly one of God's angels and  I will ALWAYS believe that!


 Trenton is also getting so much better at trying to sit down at the table to eat! He used to never do this and still goes through times where he can't. However, lately he has really been rocking this out at home!
 Trenton and one of his techs from HAC at the library this morning.
 Andrew and one of the techs from HAC.