Sunday, March 11, 2018
What does it feel like to have a non-verbal child with severe, classic autism?
I have tried to find the perfect way to describe what it feels like but there are simply no words. I have opened a dictionary and searched it up and down for the perfect word to describe the pain, but there isn't any words. It's indescribable.
Yes, I live in this world just like you. I lay my head down on a pillow each night. I open my eyes in the morning and thank the Lord for another day. I enjoy watching the latest TV shows (when I get a chance which is slim to none.) I cook, clean, do laundry, mow the yard, gain a few pounds from time to time just like you. I pump gas in my car. I go grocery shopping. I do almost everything that a normal, American does.I am much like you. BUT....I do it behind one of the worst pains in the world.
I would love for my son to look me in the eye and smile. I would do anything for him to communicate to me what he feels like and how much he loves me. I would love for him to acknowledge my existence in this world. But, after 7 1/2 years I still don't get any of it. I doubt I ever will.
I cry each and every day. I just want to know for ONE MINUTE what it feels like to share joint eye contact and love. I want simply for one time to feel a touch from him, his arms wrapped around my broken body....I want to hear him say, "I love you so much , Mom."
I have sacrificed everything since he entered this world. Our life has been turned upside down and then some...... and we aren't getting any close to one of the things that I want the most in life.
I want to lay my head down at night and to wake up each morning without the fear and anxiety of what his future holds. In reality, that will never happen. You see...when you love someone so much, it simply hurts to see them hurt. Yes, my son hurts. He hurts every single day. He cries every single day due to his challenges of classic autism. He cries. I cry.
When you love someone, you sacrifice and do whatever it takes for them. I will always do that for my T-man. No matter what kind of life we have to live, I will live it for him. That is what love does.
Hope, when you love someone you hold on to hope. I hope that one day, just one time, I can know what it feels like to have my son show me love. I want that natural, tight hug that loved ones give to each other. I want to have a conversation with him even if it is on his AAC device,.I long for a conversation so bad that it hurts. It breaks my heart more each and every single day.
But, until that happens, I will continue to live behind my broken heart and one of the worst pains known to a parent. I will continue to go about my daily life, doing what is best for the boys and myself. I will always greet you with a smile. I will always pretend that I am just fine.
We have learned to adjust to his special needs. However, I will never be fine with the fact that my own son lives in his own world and can't even acknowledge me, hug me, have a conversation with me, kiss me, smile at me with joint attention, etc etc etc. That I can never get used to..........One can never adjust fully to one of the worst pains that will never go away until you take your last breath......simply no words to describe.
Saturday, March 10, 2018
Potty training is not a simple task when it comes to autism in general, especially when it comes to non-verbal severe autism. I want to share a few tips that I learned and found important when I successfully trained Trenton, who has non-verbal severe autism.
1. The environment is crucial. Sometimes kids on the spectrum are very sensitive to the sound of a toilet flushing, bathroom fan, temperature of the room as well as the temperature of the toilet seat, or simply the echo that a small room such as a bathroom has. If your child is sensitive to these, you will need to do what you can to make the room a little more pleasing to your child. Examples would be to not flush the toilet when your child is in the bathroom. Just make sure if you have a child sensitive to these that you make adjustments BEFORE you start the toilet training process.
2. You MUST have a good motivator to get your child into the bathroom. The motivator has to be something that is pleasing and motivating to your child. If your child really likes the a certain video on youtube, then use that. The key is that your child will only be allowed to have that while they are in the bathroom on the toilet.
I had a hard time coming up with something for Trenton because he was not into much when he started training. After I tried different things, I finally had success with a mini-laptop. I bought him a mini-kids laptop and he only got that when he was sitting on the toilet. When he was done, I put the laptop up where he could not get it. This was very motivating for Trenton!
After the first six months of training, Trenton got to where he did not want to go into the bathroom at all. He would go into a meltdown. Finally, after a few months of battling this, one day I completely changed my bathroom décor to Sesame Street. I bought a Sesame Street shower curtain, put sesame street stickers all over the walls. HE LOVED IT!! He only go to go into this certain bathroom when he was on the potty. I made him use the other bathroom for baths. HE LOVED his new Sesame Street bathroom. I'm not going to lie when I say I spent a lot of money in 18 months trying to get Trenton successfully trained!
3. When your child successfully goes in the toilet, give him immediate praise! Praise your child with whatever motivates them and what they like. Trenton love it when I verbally praised him and he loved M&M's. Therefore, he got both! He ONLY got M&M's when he went in the toilet. Again, this was a huge motivator for him because he loved M&M's but ONLY got them when he went to the bathroom. Eventually, it plays a huge role. It won't at first because it takes time as anything does with autism. However, over time he realized that he only got those when he went in the toilet.....He didn't realize it for a year or so but he finally did.
4. Have visuals displayed in the bathroom. Children with autism thrive off of visuals. By my toilet I had all the steps to going to the bathroom right there for him to see at all times. I had this displayed in my bathroom before we even started the process. If your child likes social stories, find a good social story for them to watch on YouTube. USE VISUALS!!!
5. Use short sentences. Children on the spectrum has difficulty understanding verbal instruction. Keep on commands very precise and short. Use sentences such as , "potty time.", "sit on toilet", "pull pants down". Do not say a big sentence such as...."okay not it is time to go to the bathroom and try to potty." This is WAY to much for a child with autism to understand and comprehend. Everything needs to be short and precise.
I have many many more tips....stay tuned for more post on tips on how to train your child with non-verbal severe autism.
One of the most important things I can tell you as a parent is to be consistent and don't give up! It took me almost two years to get Trenton trained. I cried almost every day. IT WAS VERY DIFFICULT!!!!!! But, I stuck with it and Trenton finally got trained after two hard years!!!
Sunday, March 4, 2018
Friday, February 23, 2018
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
Saturday, February 17, 2018
Continued prayers for these two little boys. Andrew still having issues in Kindergarten and trying to adjust to me working.