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Autism Cover for Let it Go

Posted on May 30, 2014 12:00 am by TheAngelForever

Some days you see something in your social media stream that catches your eye. Yesterday afternoon, just a few hours after my son’s IEP meeting, this happened. Someone shared a video of a young woman named Sarah-Jill Rush. This talented individual person wrote a cover of Let It Go from Frozen for people with autism. As I sat there watching the video, I had tears in my eyes.

Happy tears because…

I am hopeful for next year after our meeting and all of the supports that are in place for a major move into middle school.
I am thankful that our team tries to listen to feedback and are working with us to help my son.
I am grateful for brave people like Sarah for sharing the inner story of autism with others.
This song really hit a nerve with me and I can see my son doing something beautiful like this one day.
Social media is helping to get the word out about autism awareness.

Please take a moment and watch this video of Sarah, AKA ZebraGal, singing her version of the song.

The words of her song are powerful. A few of the lines that I really adore are:

My meltdowns illustrate this swirling storm inside
Couldn’t keep it in, heaven knows I’ve tried

Let it go, let it go, can’t hold it back anymore
Let it go, let it go, stand up straight and tell them more
I don’t care what they’re going to say
Let this girl stim on
The stares never bothered me anyway

It’s funny how support makes ignorance seem small
And the fears that once controlled me can’t get to me at all

When you listen to the video, read the words. See what Sarah is saying. She not only has accepted her autism, but she wants others to be proud of who they are and being on the autism spectrum. Sarah tells us that letting it go a la stimming and meltdowns is just part of who you are and no reason to be ashamed.

Once again, knowledge is power and so is the need to educate others about those individuals living on the autism spectrum.

Some of my other posts about autism:

Categories:
parenting PSA Special Needs

Surgery Day and Beyond

Posted on April 22, 2014 3:01 pm by TheAngelForever

Recently, I wrote about telling your child that they will be having surgery. While JSL cried after I told him, he did really the week before his surgery. There seemed to be enough distractions that kept his mind busy. On the morning of his surgery, we had him pick out some toys and a stuffed friend to bring with him. As we checked into the hospital, JSL and his friend George Jr. were given ID bands to wear to the surgical waiting area.

After a short time, they called us to go back to the pre-op area where JSL was weighed and measured for anesthesia. Then the nurse brought him over to the area where he would be staying until it was time to go back for his surgery. I have to say, this was probably the hardest part for him. It was bright, there were a lot of people waiting in many areas, and the reality started to sink in. Suddenly, he had a lot of questions about anything and everything.

The ENT and anesthesiologist also came to visit and talk to us. It was around this time that he started to cry. Something that the anesthesiologist said really bothered him. She was probably the only person that I was not a fan of because her bedside manner with children was clearly non-existent.

Next, JSL was given a hospital gown to put on. The nurse also handed him a pile of stickers for being a brave kiddo when it was time to take his medicine. He was not a fan of the Versed and had a hard time swallowing all of it without something to drink.

There is something magical about the medicine that they give kids before surgery. In a short period of time, JSL did not have a worry in the world. He was playing with his Jedi Force characters one moment and then, he asked to curl up because he was tired.

The timing was beautiful because that is right around the time that the OR nurse and NA came to wheel him away. He did not cry and barely looked up when we told him he was a brave boy and that we loved him.

TechyDad and I then went back to the surgical waiting room. The ENT told us that the three procedures would probably take 30-45 minutes from start to finish. He would come out to see us as soon as he was finished. We each made a few phone calls and let family know that he was in surgery and then we were walking into a room to talk to the doctor.

Everything went very well. One part of the surgery surprised the doctor a little bit, so some stitches were required. He explained restrictions and a few other items to us and said they would call us as soon as JSL woke up so we could see him. About 15-20 minutes later we walked into see JSL half asleep with a popsicle in his hand.

A short time later, JSL was moved into a small room of his own. He would stay here until discharged. The nurse was fantastic and helped us to get water, some more pain medicine (his throat was hurting him from the tubes), and tried to get him to eat a slushy. We tried to use his tablet as a distraction to help while the additional medication started to work.

Five hours from the time we arrived, we were heading home with instructions. We knew that the next few days would be a challenge, but I think we were a bit naïve. More about this coming soon.

To those who have had children home post-op, how do you keep their spirits up while they desperately want to play outside and do things that are not permitted?

Categories:
parenting sick kid

Telling a Child About Surgery

Posted on April 10, 2014 12:30 pm by TheAngelForever

There are days that I wish parenting came with an instruction manual. Today is definitely one of those days. JSL, 6, is having surgery in just over a week and he does not know yet. Actually, neither of the boys know because there has been no real reason for them to potentially worry over the last month. The plan had been to tell him tonight because the pre-op appointment was tomorrow morning. Now, that is being moved due to an emergency with our doctor. No big deal, but I still think it is time to say something. JSL has no school next week and if he’s scared perhaps he will say something to his teacher tomorrow. She knows our plan and has been wonderful and supportive the entire time.

Still, how do you tell your child that they are having surgery?

I know that JSL is not scared of doctors, hospital, and procedures. This is my child who begged to see Nana’s wound after her foot surgery last year. Unlike his big brother who covers his eyes when there is a cut finger, JSL wants to help out. The kid gets a kick out of medical things, but this is different. This is unlike anything else either of the boys has been through. The element of the unknown will be hanging over all of us during this time.

Teddy Bear Hospital Stations

A wise friend suggested just giving basics this evening. Simply telling JSL that he will be going to the doctor to have his nose and breathing fixed. Then, asking our doctor to explain more when we go for the pre-op appointment with her. If he wants to know more tonight, I can explain developmentally appropriate things. Of course, I probably will not have some answers. I can let him know that he will be eating a lot of ice cream and pudding. Passover will not be matzoh for him after Friday. Nana also suggested telling only him first and asking if he wants to tell NHL. This may be a really good idea.

Have you had to tell your child that they will be having surgery? I would love to know your experience with this as a parent, or perhaps when you heard you were having a procedure done as a child.

FYI – The photos are from the Teddy Bear Hospital that was about a year ago at a local hospital. The purpose was to share items with the kids to make them less scared if they end up there for something one day.

Categories:
milestone parenting

Autism and Sensory Overload

Posted on February 28, 2014 12:00 am by TheAngelForever

There is something hard for me to admit as a parent. For years I did not understand my own son and his sensitivities to different items. One minute he would hide and cry from a vacuum cleaner, but the next he was dancing to loud music. Another day, he might be smiling and happy, but moments later he would shut down and crumble before my eyes. I knew something more was going on that I could not and probably will never understand. Of course, without a point of reference and a diagnosis it is hard to convince other adults that your kid is not simply being an out of control brat with no manners.

This is the life a parent of a child with autism lives with every day. We never know when we wake up if it will be a calm day, or a day filled with anxiety and sensory overload. What is sensory overload? It is a reality for most people living on the autism spectrum. Kids who are learning the social cues of life in a world filled with neurotypical rules are stuck trying to learn to cope with items that you and I may take for granted. That clock ticking away in the classroom could be like nails on a chalkboard to me. Those fluorescent lights that buzz and flicker which we learn to ignore or never notice, could hurt a child’s head and eyes and make them more sensitive in an environment.

To this day, I still have to remind myself that when NHL thinks I am yelling at him it really may be his perception. With everything else in the room, car, or store going on, my regular talking voice may be too much for him to handle. Even several years into our autism diagnosis, I still have to stop and remind myself that just because it is not bothering me, it may be highly alarming to NHL. What’s harder for me to grasp, he does not know anything different. These heightened senses that can lend themselves to moments of sensory overload are his norm.

Curious what it may be like? The other day someone shared a link to a post on TheAutismSite.com. They included a video that everyone working or living with people who are on the autism spectrum should watch. It really is an eye opener and like no other I have seen before.

The short video breaks my heart and the words at the end are beyond powerful. There truly are no words, just moments where I know that sharing this will help more people to be aware. As always, knowledge is power and so is educating others about those individuals living on the autism spectrum.

Some of my other posts about autism:

Categories:
parenting PSA Special Needs

Autism and Perception

Posted on November 14, 2013 12:00 am by TheAngelForever

Perception seems to be a buzz word when it comes to living in the world of autism. This is a good thing and a bad thing at times. While an older child may look like they are coping in a certain social situation that they have been taught, they may actually be falling apart on the inside. Talk about your sensory overload moments. Here they are nervous, upset, and working their hardest not to do something that they are told by neurotypicals is unacceptable. At the exact same time, they are also trying to do what they need to do in a specific environment, and continuing to deal with other stimuli that we take for granted. Personally, it hurts my head and mostly my heart to think that this is what my son is going through each and every day of his life. He can’t simply be a carefree child, he has to be shown how to do things and just accept them, even if he may never completely understand it. While some may say, but he doesn’t know any different – that does not make it right and means he has less rights to these moments.

Just because a child is laughing and seems to be enjoying something, they may just be going along with the group because they do not want to appear awkward or left out of the group. Meanwhile, they have no idea why they are laughing, they are anxious, and all they really want is to have friends and people that understand them. Of course, everyone looking at this picture will think that the child is having a great time because they see a smile and laughter. This delayed reaction to what is really happening allows for a lot of mixed up messages about the child. Later on when they decompress and feelings, emotions, and words come out, they are raw. Tears flow from not only the child, but the parent that so desperately wishes they could make it stop and help others to understand.

As I have said before, being an autism advocate has moments that you just want to erase from your mind and never go back to. Unfortunately, many of them happen over and over and over again. You get a tough skin with time, but having to constantly fight can be draining.

Autism…

does not define a person, it is just how they are wired.
may mean that a person has a hard time replying to others in a social situation and they can be flustered finding the right words in conversation.
means that just looking at a person may not simply tell you the whole story. Their reality versus perception can be very different
often requires a person to cope and not be able to express how they truly feel while in that moment.
can cause anxiety when things change, or the person is not used to a social situation.
does not mean that a person lacks empathy or does not want friends. Most of the time they are even more in touch with emotions and they crave friendship, but too often are afraid to hurt others by saying or doing the wrong thing.

Please know that this post is not me whining about autism, a specific situation that happened, or life. I would never change my loving and amazingly sensitive Aspies, but I would change the ability of others to understand them, be more flexible, and help them not have to worry about what everyone else thinks about them. Knowledge is power and so is educating others about those individuals living on the autism spectrum.

Some of my other posts about autism: