Tuesday, January 30, 2018

Uncle Bob

Last week I went back to Flora for my Uncle Bob's funeral.  He had one beautiful service. It was so amazing to see everything that the town of Flora did for their mayor, my uncle. The huge flag at the cemetery was very touching.

I was able to attend his visitation and funeral only because of a few nice ladies who watched the boys for me. Watching  Trenton is not easy to watch. Trenton was at my parents house and in a familiar place so that made it better for him. I am forever grateful for this group of women who took on the task of watching them so I could spend the time with my family.

I was lucky and got a volley that was shot in the 21 gun salute at his grave. I will cherish this forever.

This is one of my favorite pictures of Uncle Bob and the boys:)
We always loved going to see him and Aunt Barb on Halloween.
I have many memories of my uncle. I will leave you with a memory that he took to his grave.....Growing up he lived right up the road from us. The summer I was thirteen years old I found myself in a pickle. My dad worked night shift and was in the house with a broken arm. I was bored so I took my dads truck out for  a drive which I did often. I loved driving my dads truck up and down the country roads and in the dirt roads between the fields. Well, unfortunately I got his truck stuck. I knew my dad would not be happy. There was no way I could wake him up with a full cast on his arm.

I called my mom at work and she said to wait till she got home or see if Bob was home. I got off the phone with her and looked down the road toward his house and saw his truck was home. I called Bob and told him about my dilemma. He met me at the site I was stuck in. He pulled me out. After he got the truck out, he looked at me and said, "Jimmie don't need to know about this." Uncle Bob saved the day and my dad just recently knew about this for the first time. Uncle Bob kept his secret and never told a soul:)

Friday, January 26, 2018

Ernie

Trenton drew this picture yesterday. A few ladies I know were watching him while I was at my uncle's visitation.  I came home and they showed me this.  When Trenton looks at the picture,  he says "Ernie." I'm sure it's Ernie from Sesame Street.

Wednesday, January 24, 2018

Stress With A Capital S



Single parenting in general is hard. When you mix autism into the combination, it is very difficult.  There is rarely any peace or relaxation when it is just me and the boys. Trenton is on the go 24/7 and has to be watched like a hawk. He can't communicate his needs. He has maldaptive behaviors and very challenging behavior daily, sensory challenges, needs bathroom help both on the toilet and in the bath, flight risk & eloper, no sense of danger, no common sense,  doesn't play with toys, often has sleep challenges, and the list goes on and on.

In our house we do not know what down time is because there is none! There is no quiet time! It doesn't happen in our autism house. IT. DOESN"T. HAPPEN.

I can't get groceries with Trenton. I can't simply run a quick errand with him.  I can't take him to my doctor appointments. I can't take him to his brothers events. I can't take him over to someone's house. Everything we do from going through a drive thru to a simple trip into McDonalds takes a lot of planning and mental preparation.

Brushing his teeth is not possible yet at the age of 7 1/2. Simply getting a haircut is not an easy task and often leaves him in a meltdown. Everything takes full preparation and very strategic planning......even the simplest of things.

What happens when "life" happens and you have stress from other factors in life. What happens when a family member gets really sick? What happens when you suffer the loss of a loved one? If you think back to when you were a kid and your parents suffered the loss of a loved one.....I am sure the majority of you did what I did and had common sense to behave and to be good because your parents were grieving. That doesn't happen here and will never happen for me!

I've been rather stressed since the passing of my Uncle Bob. My uncle and aunt have been wonderful to me and I have many wonderful great memories with them from childhood all the way to just a few months ago. I can't grieve like a normal niece should be able to. I can't pick up and immediately drive back home to be with my family. Instead, it has been non-stop planning of what to do with my kids during his visitation and funeral. What should be a time of grief is nothing but more stress.
Tonight it was all hitting me what the next two days will entail. I just wanted a nice, quiet evening to mentally prepare myself. Quite?!?!? HA! It just doesn't happen!!! It especially doesn't happen when you are single and the only adult in the house.

To add to the stress my Grandfather fell and is in a nursing home too. I have yet to be able to see and visit him. I start a job next week and unfortunately had to quit a few therapies for Trenton. I am drowned in guilt for that. What does a single parent do?!?!? I need food on the table for my babies and he needs therapy. But what do you do when it is only you? Sometimes in life, you are not able to make a decision for yourself. You are often left with no choice!

All of this is stressful enough for a typical family. We are not a typical family......so you can only imagine the stress that all of this adds to autism families. It is not just my family....it is autism families in general!




Monday, January 22, 2018

Everything Is Hard

Life with autism brings challenges to every aspect of your life. In the regular day to day challenges, you eventually find what works for you and it becomes your families normal. While you are living in your "normal" tragic life events happen. Every family goes through sickness and death. It is hard for everyone and when it hits an autism family, it makes what should be easy and manageable, very difficult.

As most of you know, I am a single mom who lives two hours away from my parents and closest family. It is not easy to manage life but I do. I miss a lot of family events and events I want to attend but it becomes normal to me to miss a lot of things. However, what has been eating at me is the fact that I have a loved one who has been in a hospital three hours from me since December 12th and I am unable to be there. I haven't been able to be there once.

I have a child with severe classic autism. The only place  he is really happy at is at home. If he goes anywhere else, it is for a very short time. I can't take him grocery shopping so a three hour drive to a hospital will not happen for him. Maybe it does for some with autism but not my son. Half the time he won't step foot in Wal-mart and when he does he goes into sensory overload and has a meltdown and I am forced to carry him out. So a hospital visit is impossible.
What does a mom like me do in these situations?
What do you do when you get the call and hear that there isn't anything left to do for your loved one?  Again, I can't just pick up and go,

There are so much more to the challenges of autism. It's just not the daily routine that is hard.....families like ours can't do anything without strategic planning and the right people there to help you. But, when it is a family issue and all family is involved in the same family matter.....it just really stinks.

I post this for awareness.  In times of family grief you still can't grieve and be there for your other loves ones because of autism. EVERYTHING is hard and nothing happens without very detailed planning because the smallest issue can arise huge problems and cause regression.



Tuesday, January 16, 2018

McDonald's

Trenton got his own ice, sprite,  lid, and straw at Mc Donalds today.  This is huge for us!!!!

Friday, January 5, 2018

Scripting



Scripting is very common with individuals on the spectrum. In fact, we all use scripts. When we say, “How are you?” this is a script. We may not really want to know how someone is doing or we may not even realize we said it; this is merely a script that people say upon meeting one another.

People with autism may memorize short or long pieces of dialogue, especially from frequently watched TV shows, movies or others conversations. Sometimes they may use scripts in ways that are an attempt at communication or they may start scripting when under stress and processing becomes difficult. When Andrew was 2 1/2 and 3, he scripted a lot. He memorized everything and spoke mostly in scripts and echolalia which is repeating back.
When individuals on the spectrum script who are high functioning, this is a great sign that they can learn from role playing. If you do a lot of role playing they can learn what to say at appropriate times.

Scripting appears to give comfort and security to people with autism. It can act as a sound buffer from overwhelming sounds and voices as well. Trenton scripts a lot. Trenton will walk around and say his ABC's or he will say, "Baby Einstein Mozart", "Blues Clues ABC's" or he will shout out the names to all of his Sesame Street friends names. Trenton is simply scripting learned DVD names and learned names to his favorite character. He does this when he is stressed. A lot of the time this will be one of the first signs that he is getting stressed. He also does it when he is pacing and needing to move.


Tuesday, January 2, 2018