Friday, February 23, 2018

Grief



Are there certain rules to follow on grieving? Is a parent only allowed to grieve for a certain amount of time?

I hope no one ever tells you when and how long you are allowed to grieve because we are allowed to grieve our entire lives.
It's been six years since I have known that something was different with Trenton. Six years of knowing my child's life was going to be much harder than mine. Six years of knowing my life has been forever changed. Six years and I am still grieving every single day.

It is not easy waking up each day and living the trials of severe autism. I think numerous times a day, "If it is this hard on me, what is it like for him?" It is in fact much harder.
I watched my son suffer big time the other night. He has lots of "days" and "moments" that I don't talk about and keep to myself.
Also, he often has nights where he gets what Clary Fleischmann explained as, "ants crawling on her body with fire." He screamed and cried for hours. He paced the house crying. He slams his body down on the ground. He hits and attacks. He can't tell me what is wrong so he gets frustrated. His behaviors escalate quickly and Andrew and  I are usually his targets.

I have cried a lot lately. Maybe it is a combination that I am working now and unable to meet his needs like I have been able to? Maybe it is because this journey never gets better because he suffers a lot each and every day. Yes, he suffers. He cries because he is locked in his body and is unable to communicate .He knows what he wants but his brain doesn't allow him to communicate it nor does it allow him to use his AAC device.  His body does not allow him to sleep without certain medicines and sometimes his body chemistry gets totally out of whack that medicine doesn't even help.....so he walks around suffering because he is so tired but his body wont go to sleep. I know first hand how hard that is! He suffers from GI issues and has severe stomach pains daily. He lives in chronic stress which leaves him with severe headaches.....again I know first hand how much chronic stress can give a person a chronic headache and it is no fun! He can't feel his body at times and needs weights...he hears sounds that we don't even hear and sees things differently than we do. His sensory needs are severe. If I had time to meet his needs like I should be, he should be getting sensory breaks every half hour to a hour every day but I can't exactly provide that.

So, yes I still grieve all these years down the road. Someone once told me that I haven't accepted my child's life if I am still grieving. That could not be further from the truth. I honestly just laugh at that remark. Grief never goes away if you truly love someone because it makes you sad to see how they suffer. Living with the grief becomes easier but deep down you are still allowed to grieve and mourn for your loved one.
As we both get older and as the world keeps getting more cruel, I fear for his life on this Earth. It is not an easy world to live in without disabilities......so just think how hard it is to live in with a major, severe disability that leaves you permanently dependent on others your entire life.

So to all the other parents of severe kids with disabilities....it is okay to grieve your entire life! We are allowed to!!! In fact, if you are like me, if you let yourself have a good cry, you will feel much better for awhile.

Wednesday, February 21, 2018

Football plays

 Andrew loves to write football plays!!! He always wants me to give them to coach Uncle Brian.



Saturday, February 17, 2018

Boys

Continued prayers for these two little boys. Andrew still having issues in Kindergarten and trying to adjust to me working.

 Trenton continues to have the hardest life of anyone I know.  He needs an active mommy in his therapies and I  can't be now that I have been forced to work.....makes me sooooooooo sad.  For the first time ever this week, I wasn't able to stick up for him when I should have but I simply can't do it all.

Saturday, February 3, 2018

T-man is getting it back!



Restaurants used to be impossible with Trenton. I have worked and worked with him since he was a toddler on trying to make it through a pleasant restaurant experience with him. I have went through a lot with him on trying to achieve this step. Many experiences lasted no longer than two minutes. Over the years we have slowly worked our way up to ten minutes then fifteen, etc.

The thing that helped the most was consistency and always going to the same restaurant. Once he was able to achieve a successful experience in that restaurant then I would add one new one and work on that place while also going back to the familiar one too.

Trenton got really good at restaurants about  a year ago. However, this past August/September he declined big time. Trenton went into a regression. His normal routine was thrown off a few times, school was added into his schedule, etc. Therefore, everything went downhill. One of the things that declined was his behavior in public, such as a restaurant experience. Even though he went through a very difficult phase, I was still very brave and tried restaurants. We didn't last very long on some days. He would sit down at the booth and scream repeatedly. He would go into a meltdown, hit, and try to escape, etc. Therefore, for a many weeks I stopped taking him out in public. He needed to get his routine and behavior under control before we could master our public restaurant experience.

Slowly over time  his schedule got back on track, he got used to school and his new schedule. Therefore, I slowly introduced his familiar restaurants to him. He started achieving them again! FINALLY!!!

Today, he went to a new place and loved it! I had a birthday this past week so my parents came up today to take us out to eat. I had Andrew pick my birthday lunch and he picked IHOP. As always, I am so proud of him. Every thing is baby steps with us and sometimes we are forced into regression due to life happening but we slowly make our way back to where we were! I am happy to report that T-man is doing well in restaurants, again! (FYI......well for us would probably be bad to most people. He vocally stims and is impulsive, and fidgets but we make it through!)

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:)