autism spectrum – Raising Autism

So Today Was A Terrible Day

So today was a terrible day. It was a day where I was told by the State of New Jersey that I am considered a neglective parent. I don’t even know why. He is almost 16 and he is just fine. We have all done a great job raising him and keeping him safe. Just because of an autistic stim I was made to take my son to the emergency room tonight.

I want to know when people are going to realize what autism is and what it does to the person who has it and the family that raises it. Just because I have been rejected by the system so many times and not have gotten services for my son since early intervention was over since the age of 3.

I have been asking for help so many times and every time I called someone I was made to feel like a fool for calling. No one knows what it is like to raise someone with autism unless you are doing it already.

I have always tried to be the advocate type and help others like me. Give them someone to talk to and ask questions to confused and scared moms like me. Not that I ever knew where to turn I would just work through the issues with our son and move onto the next one.

His new thing is liking to have the sensation of being wet so he pours water all over himself. He pours water on his pants and he refuses to take them off. I have a very hard time getting him to understand that is why his skin is hurting him and we put cream on all the time. His school nurse will call and say she had to put cream on him today and I say I can’t understand why he does this when he knows it hurts him.

The school who is supposed to be helping him and helping us understand how to live with him. How to understand him has failed us. I am remembering things all the time now where I gladly signed up to see his speech teacher, to learn how to use his communication device. Well, I saw her once and said I’ll come back next week and the day of the appointment she called and canceled and said you know you don’t have to come every week. Maybe just once every couple months. Now you made me feel like I was a bother even though you were supposed to be helping me learn how to understand my son.

Now you blame me for not trying hard enough to get other services for him just because you say so. Now you say so. I have only been trying since he was 3. Deny Deny Deny. All because someone at the school did not do their job.

I have an update to this blog. I have a few others written about this too. But the one I just did is a video series.

So we figured out since this day that my son likes the weight of the water and not the actual water. We are still being investigated as neglective parents even though we were told the case would be dropped. So I am thinking of getting a lawyer to deal with his school. If you are really interested in the full story.

Hear Him Speak

I have always been active in making sure my children spoke when they were supposed to. I have always wanted to make sure my children developed in every way they should.

We noticed that one of our boys was regressing in his life skills. Although he had spoken some words one day they were gone. Along with the recording of the only time, we heard him speak. We recorded him and his brother talking on a portable tape recorder for children. We came home to find one day the babysitter just let big brother string it all over the house. We were sad but really did not know that we would never capture that again. At least for a long time and it was a challenge for sure. But one that is rewarding.

We were told when he was 10 that he would never speak so he was discharged from individual speech class. I set out to prove this guy wrong and I vowed to bring him in front of him one day to say “what’s up”?

Here is a video of him in 2016 proving he can talk if we just never give up on him. I noticed he was using our cellphone cameras and making recordings of his own voice and playing it back and when you imitated his words no matter how silly you sounded he would get all excited and very interested in working on his voice.

We have always been active in making sure our boy could somehow learn to live a normal life as best as he could. Here is another video of him proving them wrong.

At least 5 months have passed and a lot has happened including our family being accused of neglect. Our battle is still not won yet we were found innocent of the accusation. We have to continue to advocate for our son. Until he is able to do it for himself and watching this video will show you how much he really wants to and how close he is getting there.

DO YOU BELIEVE?

Do you believe? I really never knew what I believed. When I was growing up I always believed in GOD and Angels and the Devil. Heaven and Hell.

I always believed there was something out there after we die. When my Grandmother died on April 15th, 2015 I was so devastated. I always wanted her to let me know somehow she was here. Or if she was alright. I started to see signs that reminded me of her and then one day a lady in the hair salon told me she was leaving me pennies and dimes. And that she was. Pennies from Heaven. It’s a story in itself that I will tell you.

But today I want to show you what happened on July 19th, 2016. I just got my phone on July 14th for my birthday. I was so excited to take pictures of the full moon. We started our walk on July 18th and it ended on July 19th with the most wonderous sight.

Here is a video of us ending the night. I had no idea what I was going to find when I uploaded my photos to Facebook. All I uploaded was the prettiest pictures I saw on my cell phone. Then later that night when I was looking through them I said what is that? Holy Hell. LOL. Enjoy the night. The pictures will be in order. Enjoy and leave comments on what you think.

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What is weird is as I took these photos I did not realize that there was an Angel there. I was just randomly shooting the moon and I wish I had this on video. It looks like the angel is flying away. If I would have gotten it on video it would have been a sight. Although this is very impressive I think.

I got a photo from the TV of the news chopper taking a fly by of the sunset and the sky was Crimson. Pretty strange it was the same day 5 months later and 1 day before the Department of Children and Families showed up at our door.

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So do you believe? I thought I always did but sometimes lose my faith. Why would GOD make me struggle so much? I believe he gave me my son because I was chosen. I have patience and love but there are so many things that happen in our lives that take away from the important things. I would love to raise GOD’s child without all the struggle with money and people that get in the way of building the perfect life for you and your family.

I will never give up on making the perfect life for our family. My goal is to live by Disney World someday so I can take my Autistic boy to his happiest place on earth. He was there before and he loves that place so much. I believe that every time we get in the truck that we drove him there in that he thinks we are going to Disney World every single time he is in it.