Hi, from a Guide to Autism

What I am hoping to do here is to have a place where I can put any guides to autism that I can find, to act as a resource, especially for parents that are just having to begin dealing with all that autism is, and the things you must do in order to give your child every opportunity.

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        How did it go Jen? Did you get over your nerves?I can’t teslin at the moment as I’m on my phone but will do when I can get home to the laptop.Hope HRH is doing ok and they get some answers for him soon.X

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      • Robert says:

        , Your son has autism. And so began a jonurey that we never planned to take. A jonurey that has not been easy, but has shown me what is truly important in life. A jonurey that at times has brought me to tears with frustration and has also brought me great joy. A jonurey that has introduced me to a whole world of people and experiences that I may not ever have found if not for those four little words.Michael is an amazing young man. He is friendly and outgoing. He loves to meet new people especially pretty young ladies . He is a talented artist who just amazes me with his drawing ability. He has an innate talent that many people study for years to achieve, and he just has it. He is kind and loving, and I couldn’t ask for more in a son.I have learned so much from being Michael’s mother. First and foremost, I have learned patience, something I had very precious little of when I was younger. I have learned that not everything is going to happen on my timetable, and that’s okay. I have learned to appreciate every milestone and not to take anything for granted. And I have learned that the love I have for Michael knows no bounds. I have become an advocate for my son and his biggest cheerleader. The pride I feel each time he reaches a new goal is overwhelming; I simply can’t put it into words.Unfortunately, I have also learned that the world is a cruel place where different is seen as defective , where individuals with autism and other disabilities are seen as less than the rest of us, where they are not valued. These wonderful people are so much more than their disabilities! They have beautiful hearts and souls that they will gladly share with us, if we will just give them a chance, if we will take the time to get to know them as human beings, not labels.To me, Michael is perfect just the way he is. I can’t imagine my life without Michael in it; therefore, I can’t imagine my life without autism in it, either. If a cure were found tomorrow would I give it to him? Of course! But not because I think he needs to be cured there is nothing wrong with him. I would do it to make his life easier. The world is not a friendly place toward our loved ones with autism. They are often stared at, ridiculed, and bullied often by adults who should know better. Our children with autism are incredibly vulnerable, no matter what age they are. I know that I will not always be here to protect and defend my son from the rest of the world, so if there is ever anything I can do to make the world a safer and kinder place for him to live, I will do it. In the meantime I will continue doing what I have always done, loving Michael and thanking God every day for the trust and faith He has placed in me by giving me this very special person to love.

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      Jen–listening now–you sound so at ease–love the accent. ;)When you talk about diangosis that kind of hit me–our oldest is on the specturm and we didn’t quite pick up on it till our second child was doing things he could not. Our MD’s kept brushing it off…. And the finances–geesh, don’t get me started–we do things privately as well. We didn’t want to wait or jump thru all the hoops…Jen–you’re an inspiration.

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    • Siska says:

      , “well you know, your son is autistic”. (Certainly not the best way to be told) but, at the time it was such a reilef to finally know why my child was different. I now had an explanation for why he had enormous meltdowns, or did strange things with his hands. Why he stopped napping before his older brother did, or was so rigid, or had such problems with telling us what he wanted. It helped explain so many things. Our son was 10 at the time. We had been seeking an answer for over 6 years! He is now 21.My son is so very special in so many ways and I know that we are blessed. He is probably the happiest person I know. He is smart, has an incredible memory, and is an accomplished rider. He has given me back the joy of plants. I think he is an inspiration and gives hope to many of my friends. This man-child is an enigma: even to me. It amazes me that he is about to earn his AA, and start working on his BS in the fall. I never ever would have dreamed this possible. Did I say ever? I would have said never 10 years ago. He is so smart, yet, I still have to remind him to eat, or dress appropriately. He doesn’t drive, or really understand money or long term cause and effect. He just doesn’t get that everyday stuff to be able to live independently of us. I often struggle with the social expectations for our children He has never gone to a dance, never been on a date and his friendships are limited. It makes me so incredibly sad. His entire social life revolves around ours. Quite frankly, I think that he would be and is genuinely content to just do his own thing. He doesn’t seem unhappy. In fact he is one of the most laid back people I know. All events seem to be singular, short-lived and are forgotten almost as quickly as they happened. The other day it occurred to me that maybe it wasn’t such a bad thing to go thru life not carrying the weight of the world on your shoulders. I often wonder if it is better to have a child that is somewhat self-aware or is it better to have a child that is in their own world all the time and hasn’t a clue? (or one like ours that at times is somewhere in between?) So, I ask, whose need is it for all this social stuff anyway? Mine or everyone elses????I separate people into two groups.. those that “get” it and those that don’t. I think every parent of an autistic child understands this. It is almost a given that when my friends come over, my son will be there. And, many times when we go out, the same. It is almost as if we are a package deal. They seem to take it in stride. I consider myself lucky to have such good friends. (but wonder, if and when they will tire of this..)I think my biggest fear in life is what will happen to my son after I am gone. I think we all worry about this. It literally keeps me awake at night. Those that know me, know I do not sleep!I have always thought that a person shouldn’t be (or wouldn’t want to be) defined by a diagnosis or a disability. But, I think that autism by its’ very nature has defined my son and my family. Somehow along the way, without even realizing it, I have become who I am, because of who my son is; a grown child with autism. If I were to reflect on each day, my thoughts and actions always seem to be guided by this child. He is always on my mind and in my heart.

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    • Ashish says:

      , working with the disealbd gets in the blood, it is something you can not shake or even explain to anyone else how you feel about caring for the people who need it the most.I remember Gavan as an infant, when he should have been hitting certain milestones, smiling, cooing, looking me in the eye, responding to his name, none of it came. He would just stare at his mobile, or the television, the green light on the camera etc. I would try so hard to get him to smile, giggle, coo, and he wouldn’t do it. I would cry to my husband many nights, just knowing there was something wrong, but my husband, being the positive one, always said he was fine, he just had nothing to say, and he will coo, and smile when he was ready.Well a year passed and my son was not even pointing. He would watch Blues Clues for hours, memorize dances and follow Steve while watching. He new exactly what was going to happen, it amazed me. Still, I was giving him the chance to grow, to catch up . Even with all of my experience, it was not happening to my son. He was normal, just a little delayed.2 years passed and Gavan was still memorizing Blues Clues, and other things, he was not speaking much at all still, he would mimic certain words that was it. I was still in denial. 2.5 years passed and I was sitting on the couch with Gavan, he held his hands in front of his face, shook them vigorously and made the oddest noises this was the exact moment I said to myself My son is Autistic . I immediatly started crying to my husband, and we set up an appointment to see the doctor regarding my feelings.A few months later we received the diagnosis, he had his evaluations, his IEP and is in a program full time. I really can not express how much this little man has changed my life, but he has. His is a very happy boy, a deep pressure boy. He loves to squeeze you, and loves kisses, and he still loves Blues Clues. He can count to 20, and even higher but misses some numbers, he knows all of his colors, numbers, letters, letter sounds. He can find his way around any computer, he makes his way to NickJr.com and can play any game without help, he is now 4 years old.My son is not potty trained, it is a daily struggle for us, he has no interest to go on the potty, he could go in his pull up all day and not even bat an eyelash. He still mimics most everything we say, but is finally starting to answer some questions.I am rambling.. Autism is tough, it is a daily struggle. I have lost a few friends since the diagnosis, the few friends who told me he is a typical 3 year old there is nothing wrong with him and even after the diagnosis, didn’t believe it . These were friends of over 20 years, and I had no support from them, so instead of feeling bad for myself I let them go. I now try and surround myself with people who understand not every Autistic child is the same, they are all different, and it is not an easy road to be on. I also do my best to spread awareness.I am not going to lie, some days are so frustrating I just want to break down and cry, I worry about his pottying, his speech, his coordination. I worry about what is going to happen when he reaches kindergarten. My son is Autistic, he is not dumb, he can learn like any other child, he just needs to be taught differently. Will he get this special education when he reaches school age, and will it work? This is still very new to me, so still very scary. All i know is we are blessed to have him, and I think we will keep him.

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