Autism As A Whole

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. 

I hope you all still come to my blog and I must apologize for my absence, but I am not too good at writing when everything seems to whiz past me at lightening speed. Much of my readers probably understand way more than I think you do as we are parents with special needs kiddos. I guess it is time for me to come out of the closet.

Yes, I was a closet Asperger's parent. Buddy was recently diagnosed Tourette's Syndrome and Asperger's Syndrome. This was really hard for me and I am not sure why but it was. Never the less.... I think I am ready to move forward. Buddy had a lot of early intervention until he turned three. At that point he didn't qualify for services. As I have mentioned in past posts he has been having difficulties in school which has led us to having him evaluated. We have been traveling from one doctor to another to try to find answers.

He recently had a Video EEG to ensure there was no seizure activity and it was normal. This was both a relief and frustrating. I think it was frustrating because then it becomes clear that this is a debilitating disability that he needs to adjust and learn to live with. There are no answers as to why he has it or how it occurred but he has Tourettes Syndrome and it suddenly smacked me in the face. I have been in crisis mode since January.  What started as school problems has evolved into much bigger issues with future IEP needs and the road of diagnosis.

Amazingly, I am standing strong and supporting my two boys who are on the spectrum whole heartedly. Fighting for them to receive the services they rightfully deserve and need. With my youngest this was not as hard, it was clearer and easier to accept.  It wasn't as hard to get services from the schools. On the other hand, getting Buddy diagnosed was much easier. Maybe it is because I know how to approach the doctors now. Whatever the case is, I am doing it. I am making sure that Buddy gets what he needs and I am ensuring that the proper treatments are used.


The neurologist, that I just fired, placed Buddy on Intuniv. The Intuniv made him hallucinate and he was paranoid. I informed the doctor that this was happening and she lowered his dose and decided to put him on yet another medication on top of the Intuniv. They wanted to put him on Focalin but I refused. Focalin is not supposed to be prescribed to anyone with Tourettes.  I have to advocate for him.

So, Buddy is no longer on any medication. We are starting an all natural supplement regimen. He also receives  Melatonin at night. The Melatonin has helped him sleep at night which also improves his tics. I hope this enlightens you to why I have been missing in action and hopefully I will be able to climb on board the blogging train again really soon.

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?

Throughout the past few days I have felt anger, pain, hurt, denial and helplessness. I do not understand why I am feeling the way I have felt and I don't like it. I do not want to feel any more. I just want to be numb. Pass me some tranquilizers. Just kidding, about the tranquilizers but please give me a break. As I stated before Buddy is going to be evaluated and has been diagnosed with Tourette's Syndrome. It isn't the end of the world so why do I feel so crushed. Devastated beyond belief. I don't want him to have these struggles.

I am angry that this is happening and I don't want to accept it. I want him to have it easier and I want to be able to help him. I hate feeling helpless and unable to ease his worries. It is heartbreaking to hear him telling me to stop his head and get rid of the tic. I can't and if I could I really would. I feel like I am locked behind a glass wall forced to watch him struggle with no way of helping him. This is torture. I have to admit it must be one of the hardest things to cope with and I am not doing a good job at it.

I have felt so many conflicting emotions and some that I am not even sure how to describe. I guess it all boils down to the fact that it isn't fair. It isn't fair both my boys have to struggle and it isn't fair that I do not know the answers. I hate wading in dark waters unable to see what is lurking underneath. I do not want to make a mistake. I want to make the right choices. Why can't the answers just appear in front of me. I know I sound ridiculous but I am so done with all of the struggles.

Whew, glad to get that off my chest.....

I was awarded the Stylus Blogger Award by Bella at If This Is Motherhood and Lora at  My Beautiful Child Griffin & Autism . I am honored that I was given this award and really love both of these blogs, so I think you should hop over and say hi. I looked at this award and read what it entailed and cringed as I had to tell you 7 things about myself and then pass it along to some other bloggers.

Bella is a mom of two gifted boys who can drive anyone nuts in less than ten minutes. Trust me I hear them in action. She is a devoted Mom who loves her children but must have her coffee to survive the day. I think this is something that we can bond with. We both love and can't love without our coffee. She writes about everything from Poop, no I'm not kidding, to Education and I encourage you to read her lastest post titled, "What Would I know......". This post really expresses some difficulties that most special needs families go through all the time, but it shows that gifted children also have special needs.

Lora is a single mother of a son named Griffin who has Autism. Autism, however does not have him. He is a wonderful young man and his mom loves him to pieces. I can tell by what she writes about him and how she dedicates her life to him. She is a wonderful person herself and copes with struggles of her own as well. She is my inspiration that we can make it through this and alive in the end. LOL... A suggested read would be her post What is Abnormal? This is a wonderful read.

Thank you two for inviting me into your lives and bestowing this wonderful award to me. I guess now I must tell you seven things about myself. This will not be easy but I seriously tried to procrastinate. If I wasn't reading it to my sister knowing that she would correct me I might have tried to post this without it. But, she is listening and yelling for not posting it two weeks ago when she gave it to me. I said I procrastinate right?

Seven Things About Me

1.  I love coffee!!!!!
2. I enjoy taking pictures of anything!! I could take a picture of a stick, but it would be magnificent(at least I would think so!!).
3. Melatonin is my best friend!!
4. I have gained a newfound respect for the makers of coffee!!
5. I am really bad at listing things about me as I disappeared after I had my children. I am now so and so's Mom. 
6. I love to cook unlike Bella, who burns everything, I can actually cook. I know I burned the ham for Christmas but Bella gave me the wrong damn time, so it's not my fault.LOL
7. I really love having snuggles in the morning from all my children. It is the best way to wake up!!

OK... I feel I may have totally cheated at this list.
I will try again

1. My favorite color is blue.
2. I don't like pizza unless it is white.
3. I hate the cold so I have no clue why I live in NY. It's my mother's fault. She had me here.
4. My favorite kind of Tea is mint tea.
5. I love laying in the grass with the sun beating on my face. The only problem with this scenario is I am allergic to the sun. Go Figure!!!
6. I really do love coffee!!!!

Yippee...... Finishing this just made me happy. LOL


Now to pass it along...


The Hester Family - Jessica is a devoted mom of twins who shares my love of photography as well.
The Autism Princess - Another mom of a daughter with Autism. She another wonderful mother.
Mommy Brained Madness- Another Mommy Blogger named Mariah who has three children all under the age of three. This includes a set of twins. I admire her as well. 
Listen To My Words With Your Heart - This blog is so wonderful for me to read and if you live with a child with Apraxia, it is helpful!!
I'm Screaming Inside- this is a new blogger who is just starting to write a lot. I think she just needs to break out of her box and she will be wonderful!! I hope you visit her and leave some encouragement and comments. 
Seven YuckMouths And Autism - a mother of seven children and two of them are special needs children. One with ASD and another possibly ADHD.