Autism As A Whole: awareness

Showing posts with label awareness. Show all posts

Monday, December 17, 2012

STOP SPREADING AWARENESS????

Unknown 12/17/2012 1 Comments

On Friday, December 14, 2012, a horrific thing happened at Sandy Hook Elementary School in Newtown,CT. A shooter forced himself into the school and opened fire killing 20 students between the ages of 6-7 along with 6 adults. He also killed his mother before going to the school. It is very heart breaking, many young lives that just began were ended way to soon. Out of all my fears as a parent, never would I have imagined this.

My son is 6 years old and he has Autism. When I send him to school I expect that he comes home safe and sound. Some days, I haven't wanted him to come home because of the struggles and overwhelming stress. Today, I feel guilty for that; so I hugged him a little tighter and a little longer knowing that some parents will never get to see their child come home. For some parents, the only thing left is the shoe that they couldn't find a match for before rushing for the bus, unfinished Christmas preparations, the Legos on the stairs, and stains in the carpet. I can't even imagine the pain they must feel.

In the past year we have come so far in gaining respect and acceptance for children on the ASD spectrum. In light of these events there are new fears that are now coming up and existing. Our children have always had to deal with ignorance and misunderstanding. Media has brought this to a new level. Whenever events like this occur everyone grabbles trying to come up with reasons why. Sometimes, it is bullying, abuse as a child or mental instability. This time, the media chose Aspergers, a developmental disability characterized by difficulties in social exchanges and repetitive patterns or behaviors. This is a form of autism. It has always been my goal to spread awareness and understanding.

On a personal level, with two boys on the spectrum, I have always wanted to gain more acceptance for my children. This is because of the lack of acknowledgement and understanding people have towards children like mine. Many do not understand but make assumptions that the behaviors the children display are simply due to a lack of discipline.

The reason why this is affecting me is because of a situation that that arose on Saturday. My daughter sings in a youth group and we were at her concert. I allow my son to use my camera during the performance to help keep him calm. I over heard a woman complaining about my son, so I took him out of the room. During the intermission I approached the woman, apologizing for my son disrupting the performance and explained he was autistic. She immediately understood. The part that bothered me was the comment made to me regarding my explanation. Someone approached me saying that I should be careful what information I share with people. I have not censored his diagnosis since I came to terms with it and that is exactly what I replied back to her. It wasn't until I got home that evening that I understood why she said that. She was looking out for my son's safety because of the recent media frenzy. Today many parents fear sending their children to school and out in the community as others may perceive them as dangerous people. They may notice behaviors and lash on him angrily just because he has a neurological disorder. Yes, neurological, not mental illness!!

I am angry that Aspergers has been brought into such a gruesome situation. It hasn't been confirmed by doctor's which makes it all speculation. Speculation by a group of peers that may or may not have kept in touch with him since school. Speculation about when he was "an awkward teenager". I don't know what teenager doesn't go through those "awkward" moments, but this is how society works. Society needs to be able to make sense of a senseless act of horror.

The stigma that everyone on the spectrum has to live with, is now larger and the fear is greater. 9-11 was yet another disastrous situation that occurred and the same domino affect happened. Anyone who wore a turban or looked middle eastern was targeted; not because they were bad people but because they fit the description. I have the same fear regarding children on the spectrum. Do I still spread awareness in public or is it dangerous? Is this going to cause unnecessary fear toward my child? Will there be more bullying? Are hate crimes going to occur? Maybe I should stay inside to avoid the stares and comments, but what would that solve? Nothing!!

We as parents need to be sure not to allow our fears to take control. If we allow this to affect how we spread awareness it will set us back 20 years. Now is the time to say NO, I will not hide away! These are wonderful children and we will not hide their diagnosis or abilities away for fear of others having the wrong information. These are our children and we MUST stand up and fight even harder for them. We must be understanding of other's lack of knowledge and continue to provide accurate information. We must be willing to keep moving forward in our battle towards research, understanding and acceptance. We are the voice for these children. We are their advocate and no one can change that.

I want to remember all of the precious gifts that were lost. My thoughts go to their families, friends, and community. I also want to send my thoughts and love to the children, teachers and staff at the Sandy Hook Elementary school who survived this tragedy. My thoughts go to the families of the wonderful staff that lost their lives protecting our young children. There is never any way of knowing what tomorrow will bring so, hug them a little longer, tighter and always tell them you love them.

Sunday, September 2, 2012

10 Things Every Child With Autism Wishes You Knew

Unknown 9/02/2012 3 Comments

Just wanted to share this video that I updated and created. The words were by, Ellen Notbohm. Amazing author! Enjoy

Tuesday, August 16, 2011

Stress..... Change......Children

Unknown 8/16/2011 0 Comments

Well, summer school has ended and the chaos never seems to end. I clean, they mess, I clean again. Physical fights and screaming throughout the day. I am not sure how every other parent does it without losing their minds. Any thoughts? I went camping with some friends and all of my children and it went pretty good. At least better than expected!! There were a few meltdowns but they were manageable. It seemed to be a stressful trip for me though because I was walking on egg shells not sure what would trigger them.

Nevertheless, we had fun and the best part was the kids faces when they went swimming in the lake. Chucky loved the Orange buoys. My camera broke when we were there so that is an extra stresser cause I don't have enough right? Chucky has been having toileting issues as of late and I am not sure how to handle it. He is wetting himself throughout the day. Isn't regression great? I am so excited to clean pee off of every floor in my house. Yippeee!!! Sorry for the sarcasm but I did say I was stressed.

I haven't been blogging as much cause it is so hard to concentrate anymore. I cant sit here for more than 3 min without an interruption and then I never seem to get back. When I do, there is other things on my mind and I just cant write. I hope this gets better with school coming up and I can sit down and maybe finish some of the 50 drafts that I had started but couldn't finish but don't hold your breathe. I just wish some of this craziness would ease off for a little while. Well, that was a scream crash boom...... Gotta go!!!!

Monday, March 14, 2011

Having Faith With Special Needs

Unknown 3/14/2011 0 Comments

I went out this weekend to do the Shamrock run with my niece. I was not expecting to run. I thought I was going to watch the parade. Until, my children wanted to be in the run. So, what did I do? I ran and walked in the parade about 2.5 miles with my children. Thankfully my sister was able to take Buddy cause he was tuckered out but my lil man Chucky Cheese walked the whole thing. Except for the times he was carried in between, but, he walked the whole time. LOL.. I think the hardest part was in the beginning when they shot the gun off and Chucky started flapping and spinning and Buddy covered his ears and cried. My poor babies. So I cuddled for a minute and picked Buddy up, almost getting trampled but hey, my babies needed me. Then off we went. It was a bit crowded at first but with how slow my kids went we were soon in open space and it was wonderful. Great exercise for them. So, what is the point of all of this?

I guess, I just wanted to allow you to experience my joy and pride in my boys. They overcame a lot of struggles yesterday and did an amazing job. I think sometimes, as parents with children with special needs, we tend to overprotect or avoid certain situations for a fear of their tolerance. I am not exempt because there are times that I will say nope, can't do that cause he can't handle it. Well, frankly I have been wrong and while they may have had moments it was not nearly as bad as I would have thought. I just want to give the knowledge that your child needs your faith to grow. If you never let them experience things for fear of their reaction, not only will you never know how they will react but they will never learn how to react.

I know how tough it can be because there may be times that it does NOT work out as you would like but I do know that it is all a learning experience and in order to learn they have to experience. A good example of this would be my latest visit to the doctor with Chucky Cheese. She was amazed at how far he has come in the last couple years. He went from being a totally disconnected child who was entirely non verbal to a verbal one who visits our world much more often. Yes, we have rough days but he has improved and comparing it to last year I am amazed. He really has made a lot of progress.

To wrap this up I think that we as parents need to give our children the room to grow and explore their world. They need to learn how to maneuver in the world. Make sure that they know you have the confidence in them to achieve whatever they may want to achieve. While they may not reach their goals at least you are supporting them and showing them that you have faith they can achieve them. They will surprise you so keep your minds open.

Wednesday, February 9, 2011

AutismCenter Uganda Needs Your Help

Unknown 2/09/2011 0 Comments

What would you do if you could not provide your child with services because the services didn't exist? This is the life of the children in Uganda with Autism. Many of these children no longer have parents and are left to raise themselves and siblings. Autism Uganda works with community members and leaders to bring help to Uganda's autistic orphaned and desperate children.

Their mission is to bring a new hope to these children by helping to meet the increasingly high numbers of Ugandan children with Autism. In order for these children to have a chance to do more with their lives than simply cling to life, they need the basic materials for education. Think of the little boy, Kalumba Mustafa, in the picture, he is only four years old and lives in the Johnson Orphanage School. They don't have parents who give them the hope, love and challenges that they need to succeed.

Johnson Orphanage School has been successful in providing many of these tools for many children, but there are still many more that need help. In the village of Bbira, the Center has put up a school house that serves both as classroom and shelter to over 150 Autistic children. Items from pencils to toothbrushes have been donated by many generous individuals and are being used right now to improve the lives of many children.

Nevertheless, these children still need other important basic needs, such as clean drinking water and a blanket or a mat to sleep on. Recently, they had a water shortage and they do not have the funding to get piped water to the center. They need all the help they can get. If you cannot help financially then please tweet this. Maybe you could pick up an extra package of soap and ask friends to do the same. School supplies to mail to them. Every little bit counts and helps.

You can help provide these children with a place to sleep, a well from which to drink and a book to read. I hope that you can find it in your heart to spread this around and help these children in Uganda. Together, we can make a difference, one child at a time.

http://autismuganda.webnode.com

autismuganda@yahoo.com

Monday, January 10, 2011

The Opposite of Ignorance is Awareness

Unknown 1/10/2011 0 Comments

Last night as I was doing a little grocery shopping with Chucky and Pumpkin at Hannaford a woman approached me asking about the device my son was playing with. I explained that it was an iPad that he got for Christmas . She asked what it did and inquired if they were for children. I told her that we use it to help him communicate and also to teach him. They are not just for children but many children use them. I did NOT mention that Chucky had Autism. It didn't even cross my mind to tell her this.

I question myself about why I didn't take the opportunity to educate her about my son's diagnosis. Why not educate an open ear? Was it for fear of rejection or maybe just an avoidance of the topic? Although it may have seemed like a perfect situation, at that moment, I didn't need to. He was calm and was watching Curious George. I don't feel there is a need to point out to everyone that he has some difficulties. I want them to know him for who he is and his name is Chucky Cheese not Autism. The woman continued to chat about her son and Curious George and the iPad when my son began flapping and screeching.

It was at that moment that my heart dropped and I felt like I wanted to run in the opposite direction. Instead I tried to calm him and maintain the conversation despite my fear of a rude ignorant comment. I misjudged the woman and I am sorry for that. Instead of making a nasty comment or judging my son she calmly asked me if my son had Autism. Yes, you heard me right. She asked me about my son without coming to her own conclusions and without making false judgement.

This is the first time I have encountered someone that was able to question the behavior without judging my parenting and being critical. My offering the information wasn't needed. While I was cringing and looking for a quick exit she was connecting and inquired. Maybe she saw the instant fear of rejection in my eyes or the look of complete tenderness in my interaction with him, but she got it and was compassionate. I appreciate this and encourage anyone who is unsure about a situation to ask. It feels better than to have someone gawking or making rude comments.

This lady made my day. Not only was she open to attempt to converse with my son but she was also open enough to ask questions. She wanted to know more which is how we spread awareness and how we open the doors to acceptance. The story doesn't end there because she also looked at me and expressed how wonderful she felt I was doing with my son. This made me feel as if I was invincible even if that invincibility only lasted 5 minutes. It was worth it. So, to the woman in Hannaford I must say thank you. You gave me more than you could ever know just by asking a question and exchanging kind words and a smile.