Tuesday, May 31, 2016

Andrew


My heart breaks for Andrew every time we leave Illinois to go back to Indiana. Every time he cries and that is no exaggeration.
"But I want to live here. This is my favorite place to live." He will say as he cries.
Every time we are on our way there he is elated! Every time we leave he is sad and cries. It breaks my heart.

A few weeks ago Andrew said, "Mommy I liked living in the grey house. That is when I got to see all of my family every day." I said, "I know Andrew. I loved living there too."
Andrew said, "That is where I had Daddy in my house every day. I guess I will start being the Daddy in our house in Terre Haute."
I just smiled and teared up and said, "Yes, you can be the Daddy around here. Mommy may need you to help me with Trenton one day."
Andrew said, " I will be Trenton's Daddy but I want ten more kids, Mommy."

Again, this morning on our way to drop Trenton off at Harsha Cognitive Center, Andrew tells me he is going to grow to be big and strong and be the Daddy at our house.
Andrew has a heart of gold. He has a beautiful, sweet soul for a 4 1/2 year old boy. He is so smart and picks up on so much. He worries about his brother and his family and it is so sweet!!
I have to say, I am doing something right and I can see it in him every day.


He has been a Pops boys lately. I snapped this picture of them cuddling the other night. So precious!


Sunday, May 29, 2016

Soaking Up Life's Moments!

One day this week on our way home from Harsha Cognitive Center, I hear Trenton start making his excited noises. Then I hear him say, "Trenton." I immediately start praising him for saying his name and he starts clapping and making his excited noises even louder.
I said, "What is your brother's name?" Trenton smiles and said, "Andrew". Again, he starts clapping and making noises. Andrew smiles from ear to ear and kept saying, "Trenton said my name!"
All three of us were smiling, clapping, laughing, and enjoying the moment all the way home:)

Love my boys to pieces!! Love celebrating and praising them each and every day.
Autism is most definitely hard but it has really made me appreciate the simple things and to soak up every minute of life in a way that I never would have soaked it up before. I couldn't have asked for a better lesson in life than the one God has gave me the last 6 years!

Saturday, May 28, 2016

Megan's Story

I am happy to post a guest post from a fellow autism mom. Thank you so much Megan for sharing your story!
Here is Megan's story....

Thursday morning. I start my day off by buckling up my two non-verbal boys on the school bus and sending them off to our local public school. When they get home from school, they don't share stories with me about how their day was or what they learned in school. Instead, I fix them a snack and then open up their backpacks and pull out my communication notebooks with their teachers to see if there are any notes to me. These notes can be about good days- accomplishments, new goals they met, sweet moments they shared with their peers, toilet training success, etc. They can also be about hard days- meltdowns, acting out, tears, etc. Then we pack up the car and head to our after school activities- speech therapy and occupational therapy. 

This isn't the way I viewed my journey of motherhood. Six years ago, as I was setting up my baby boy's jungle nursery and talking to my huge belly, the words 'autism' and 'hypotonia' weren't even on my mind. Now they consume my life 24/7. 

AJ's story starts the way all children's do. He was a healthy and happy baby, hitting all of his milestones on time. When he reached the age of 9 months, we started having concerns about his gross motor skills. He never wanted to do tummy time and we didn't know how he would ever learn to crawl because of it. We also noticed that while he could sit independently with no problems, he would still fall over more than other babies his age. He would lose his balance really easily when he would try to reach for a toy. So, we found ourselves constantly sitting him up in front of furniture or with blankets and pillows around him so that if he did fall over, he'd have extra cushion for support.

This is when our journey to a diagnosis started. We got AJ into physical therapy and we started pushing for answers from our doctor. We knew it wasn't normal for a child to scream and cry like AJ did when we tried to get him to put weight down on his legs for standing. We took AJ in for his 18 month check-up with the doctor and it was a very standard appointment- weight and height check, standard autism screener (which he passed), and shots. We shared with the doctor how he was doing the "touchdown" command and roaring like a lion and exploring many new foods. She then ordered some blood work and referred us to a neurologist to try and get some answers for his gross motor concerns.

We went in for our consultation with the neurologist the next week and after observing AJ for a little bit, he sat down and told us that he thought AJ needed to be evaluated for autism. We were in shock. He had just passed his autism screener the week before. I called our pediatrician when we got home and even she was upset, saying how she saw no signs of autism with him. Our family had trouble understanding it too. However, within that next week, AJ completely changed before our eyes. He stopped doing tasks that we asked of him, he started crying all the time, he would get upset if we went to other people's houses (even ones he was comfortable at), and he started refusing most foods. He became a different child all together. When we saw our pediatrician a few days later to discuss the neurologist appointment, she reevaluated him and decided he needed to be referred to an autism specialist. 

The wait to see the autism specialist was about 6-9 months at that time. In the meantime, we kept trying to pursue answers for his gross motor delays. However, every time we saw a new specialist about that, they just told us the same thing- he needed to be evaluated for autism. We were very frustrated and felt like we couldn't make any progress. We finally ended up receiving a diagnosis of hypotonia (low-muscle tone) and then a few months later, AJ was diagnosed with low-functioning autism.

Our battle to get AJ help didn't end there. As we started to explore ABA options for him, we found ourselves getting turned away because of his gross motor delays. We were told hat ABA couldn't help him much until we were able to get him walking. It was very frustrating to say the least. All those months we spent TRYING to get him gross motor help and we couldn't because everyone said we needed to address his autism first.Then we get the autism diagnosis and everyone says we still can't get him help until we address the gross motor delays.

Fast forward two years later and we have finally settled in to a nice routine with AJ. We found a wonderful therapy clinic that offers him individualized therapies (speech, occupational, physical). We still struggle with insurance, trying to prove that physical therapy is a necessity, but that's a whole other issue. We also have an amazing support system at school for AJ. They work with his outside therapy to make sure that all of the goals (both short term and long term) that are set for him are consistent and being focused on at the same time.

And as I sit and write this, we are currently on the wait list for our second son to be evaluated for autism as well. Its easier the second time around, and harder as well. It's easier because I know what is ahead of me. I know what to expect during the evaluation process, I know what kind of forms I'm going to need to fill out, and what calls I am going to have to make. I already have a support system, and a therapy clinic that I love and trust for my boys. I already know everyone at the school that will make up his IEP team and hopefully they aren't too sick of me yet! I'm more prepared the second time around. And I have more coffee on hand!

In other ways it's harder too. The autism spectrum is so large, but for me, I've been primarily focused on the version of autism I see with my older son. However, autism looks very different for both of my boys. One of them is a picky eater, the other isn't. One of them likes loud noises and music and high energy environments and the other hates it. One of them insists I wear my glasses every hour of the day, and the other ones is constantly removing them from my face. Getting a second diagnosis means having to learn an entirely new version of autism. 

Autism has taught me many things over the last couple of years. It's taught me patience. It's taught me how to communicate without words. It's taught me how to appreciate small victories and to measure success in inchstones instead of milestones. It's taught me how to function on little sleep. Its taught me to never give up hope. My oldest son is just about done with kindergarten and I have seen him accomplish things this year that I never even imagined. He's typing, he's matching colors, he's matching letters, he's following verbal directions, and he learned to walk! And as I begin this autism journey with my second baby boy, I'm sure I'm bound to learn even more. 

Friday, May 27, 2016

Life Is All About The Small Things

I had my front door open one day this week for one hour. I can count on one hand how many times the front door has been opened.
Why don't I open my front door, you might ask?!?! Well, I can't because of Trenton. Trenton is an eloper. If the front door was open, he would run out the front door and not look back. One time when company was over a guest left the front door open and Trenton took off running out the front door.  It happens and will happen if the necessary precautions are not taken care of.

Trenton wouldn't look before crossing the road in front of our house.  He wouldn't look for cars or any kind of moving vehicle. He would just simply take off and run.
He is an escaper and the only way to control that is to have all doors closed, locked, and the special high locks done at all times. I rarely open my blinds in the front living room. If he happens to look out the blinds and see something in a neighbors yard that he wants, then he will go into a meltdown for it. It can ruin the day! With that said, I have to be very careful about when I can even have my blinds open. I don't worry about the blinds that face the backyard because all he can see is our backyard.

Today I read a story in the news about a family that had some tragic events happen to them. The neighbors reported that the family was "odd" because they always kept their doors and blinds closed and never socialized with the neighborhood. Well, I can tell you that this family had to do what they had to do. They didn't want to live like hermits and not open their doors and socialize. They simply lived the life that they had to in order to keep their child with autism safe.

I would love to open my front door, windows, blinds, etc. OH HOW I WOULD LOVE TO! But I can't. It's about safety. It is all about keeping my child with severe autism safe at all times.

I forgot how great it felt to have the front door open the other day. I felt like I was being "social" with the neighborhood! HAHA!
It really is the simple things in life like opening my front door that means so much to me! When I say life for me is all about the simple, small things....well...it truly is folks! As simple of giving thanks for being able to open my front door!



Thursday, May 26, 2016

Special Education: Starting the Process

I am going to try to do a series of special education post. I tried to do this about one year ago and then I got away from it. I focused on writing those types of articles for Autism Parenting Magazine the past year. However, I realize that not everyone gets that magazine so I am going to try to do a series of special education post on here to help you!

I miss working! I loved working with special needs kids. I just never realized  I would have my own one day. With that said, I believe it helped me a lot. It helped to prepare me for the reality of autism with my own sons.

As a special education teacher, my heart always went out to the parents at IEP meetings. I saw them cry during the meetings. It was all I could do to not cry with them. Before I knew it, I was the one on the other side of the table as a parent, crying. I am so thankful that Trenton had an amazing teacher while he was in the school system when we still lived in Illinois. His teacher reminded me of myself when I was a teacher. She never once made me feel like I shouldn't be crying. Tears are shed because we love our children and it simply hurts to watch them have special needs.

When I was working in the school system, I realized that there were several children that had special needs and their parents didn't realize it. They were either blindsided, in denial, or never had anyone to help them. Often, the school system is where the process starts for many families. Even though your child has special needs, it doesn't automatically qualify your child for special education. With that said, let's talk about what the steps are if you think your child needs special education.

  • Start by focusing on your child's difficulties. Does your child have academic problems, delays in development, inappropriate or hyperactive behavior, difficulty staying on task and paying attention, difficulties with receptive or expressive language, etc.
  • Once you examine your child and gather their challenges, you can formally ask to begin the process of a special education evaluation. Call the school system and get in contact with the special education department. If you child is already in school, talk to their teacher or their teacher may talk to you about it first.
  • Gather all the information you can! Get information from your child's teachers & doctors. If your child is not in school yet, get information from their doctor.
An important thing to remember is that if your child has a medical diagnosis of some sort, that does not automatically qualify your child for special education. Your child will still have to be evaluated from the school system in order for the schools to see where the proper fit for you child is.

All in all, remember that you can request an evaluation for special education at any time. Don't be afraid to ask and get the process started yourself if you have to. If your child is young and just getting ready to start school, more than likely, you may the one that needs to take the initiative because you are the only one that really knows your child's ability at that point.

Please stay tuned for more special education post.

Monday, May 23, 2016

Don't Take It For Granted

It's not everyday. It's not every week. It's not every month. It's simply hit and miss when I get affection from Trenton. When it happens, I soak up every minute. I thank God over and over! I cherish it and it gets me through till the next time.
If I can give a small amount of advice to parents it is to never take one hug, one kiss, one touch for granted. Don't take anything that your sweet child does for granted. It is all gifts given to us. Some parents no longer have their child on Earth....some parents have children with disabilities....some parents have children with illnesses, cancer, you name it....there is a lot of stuff out there. So please, don't take one simple hug, kiss, or moment for granted! I know I don't and I never will again.




Sunday, May 22, 2016

Weekends on the severe end of the spectrum

We made it to Sunday Night!! We survived another weekend trapped like prisoners in our own home. Why do I call ourselves prisoners in our own home? If you are familiar with severe autism, you know exactly why.  We can't go anywhere!!

You know how people go to the store to get prepared for a huge winter storm? They know if the storm hits, they are trapped in their house. That is exactly what I do every Friday and how I feel every Friday. I have a list of items that I know I have to have enough of for two whole days. If I don't have it, I go to the store on Friday before I pick Trenton up from HCC. Why do I do this? Well, I am not like the average mom. I have two children with autism and one of them is unable to go to the store especially when I have my other child with me. With that said, that is why we are prisoners. We are trapped in our house and unable to leave unless we take a drive around town just to get out of the house. Trust me when I say the boys and I are used to taking drives. We have been taking them for 5 years now.

If I don't have an item and Trenton is out of it for two days, it is two full days of meltdowns. An autism parent has to be prepared and always think ahead in order to stop a disaster before it starts. Autism parenting involves strategically planning out each and every detail in order to save yourself from sensory overload, maladaptive behaviors, and much more.

Not every family affected by autism lives their weekends like us.  Families raising children on the milder end are more than likely able to go out and about. However, families raising children on the moderate to severe end can face these circumstances.

This Sunday we were even unable to go to church, so we really felt trapped. However, we survived. The boys had an overall good weekend.  I, of course, made the most of it and treasured every moment with my two amazing sons:)