“It is not the critic who counts; not the one who points out how the strong person stumbles, or where the doer of deeds could have done them better. The credit belongs to the one who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends oneself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if one fails, at least fails while daring greatly, so that their place shall never be with those cold and timid souls who neither know victory nor defeat.”
~ Theodore Roosevelt
If you would like to write to us, please leave a comment on one of my posts and I’ll get back to you as soon as I can. Thank you.
The Never Normal 
Hi Amy,
Your blog is just amazing! What a wonderful little boy. What a keepsake, this is better than scrap booking. You go girl… I am amazed t your strength, humor and intelligence. You are a wonderful person.
Val Schulman
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Thanks Val! I appreciate that. You rock.
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Amy your writing is beautiful. I am deeply moved. I was unaware of how things have been going for you guys. I hope you all get the help and care you need and deserve.
Bryan Beckman
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This is one of the most evocative blogs I have ever read having stumbled upon it quite accidentally. I am moved by your writing, experiences (to date), and honesty. Without pity, I wish you and your son the very best this world can offer.
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Hi Amy,
I’ve caught some of your blogs since finding your article in our local Spotlight. (I now live in Glenmont, near Delmar) Your blogs are engaging and lovingly written. It cannot be easy raising a son with undeniably difficult behavioral issues.
Keep up the writing and entertain the thoughts of compiling a book of your experiences with Jonah. He’s a lucky boy to have you as a mother…
Love, Emily
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Hi Amy read your article in the Parent pages and had to find your blog. read most and totally understand alot of what you have been through. I too have a special needs child, I too had to go the residential route and though as you have said is painful to consider was the best thing I could have done for me and my daughter. we found a great program for her in Rhinebeck (not sure if it is the same one you looked into or not) My daughter has anger issues and was as violent as many of the outburst I have read you write about. My daughter is Bipolar among other things. A lot of her behaviors are very similar to that of a child on the autism spectrum yet also very different. I applaud you for all you struggle to do and please do the residential without feeling you are failing you are not – take it from one who was there (is there)
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Hi, Amy,
I’m a good friend of your mother-in-law Jane Krebs. She gave me a link to this blog about a year ago. I’ve gotten caught up in the saga of Jonah. I wish there was something I cd do to help you all. The one thing I can tell you with certainty is that writing about one’s daily life gives one a grip on it that non-writers don’t have. But you know that!
I had a retail sales job once that I didn’t like very much, so I started writing poems about my encounters with customers. This had the effect of making me wonder, even as I dealt with them, how I would write about it that evening. I wd find myself smiling even as the customer did something that wd otherwise have irritated me.
Whatever happens about Jonah’s placement, just keep writing. It’s the best road to achieving mental balance. And perhaps there’s a book to be made of all these blog entries, eventually.
Good luck & love,
Patsy Sweeney
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Amy, your blog is great! I’m so glad I found it as I also struggle with a very violent and aggressive ASD child….he is different from your Jonah as he is verbal and he is also very high functioning and smart, going into the 3rd grade this year, however he has always been a very difficult child….bringing me to tears at least once a day usually….socially, emotionally and behaviorally he is too much for me most times….he is more like a 2yr old than an 8yr old….I have to watch him constantly, care for all of his needs and cater to his demands all day everyday….I have lost myself and the worst part of it is I have not been able to get very much support or help in my community….I’m trying but there’s just not much out there for kids like him….good luck to you and your son as he goes away…I’m sure you are doing the right thing for him….and it is out of love, the thought of having to one day send my son away has crossed my mind and is too much to bear….it’s a hard decision for sure! Take care…..Angie
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Amy,
I am thinking about your coming weeks as you prepare yourself emotionally and physically for the placement of Jonah. I haven’t forgotten the bond we forged last December at Four Winds, and still read your blog and think of you daily. I will be wishing good things for you, and sending you virtual hugs, and a shoulder to cry on…until we can meet in person. I love you!
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Amy,
I just found your blog yesterday and I think I read it all. My son, Josh, is also autistic, non verbal and has a smile that is so sweet and beautiful, my heart fills with joy every time I see it. His laugh …its magical. Josh is 6 and truly a sweet, happy little boy who can charm absolutely anyone. His OT even listed affectionate as a strength and weakness, because he tries to snuggle to avoid his work.
We have had two incidents of aggression (when he attacked with a appalling determination and violence) at home and maybe five at school. He was on meds and it disappeared when we stopped them, thank God. Most people just can’t understand the horror of having your sweet boy rage against you. How even as you protect yourself (and/or others) from your child …your baby; your heart is shredded by his pain and anger. And still, moments later, a smile or new ability can fill you with blinding hope. I don’t know if I will walk your path in the future, but I feel like I have a long hard look down it. It helps to know that we aren’t alone. Thank you for generously sharing your story.
Debbie
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Hi Amy,
I love your blog. I can only imagine what you are going through…you are such a strong person. I will continue to pray for your strength through all of this. You are truly amazing and Jonah is so lucky to have you for a Mom.
It sounds like he is doing so well in his new surroundings.
Take care and God Bless you,
Kerry (Zanello) Endres
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Hi Amy,
Your blog is wonderfully written. I have a 12 year old son with Autism and right now he’s having difficult behavioral issues. I know at some point I’ll have to place him. Your blog provides comfort, thanks for sharing your story.
Erin
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Hello Amy.
This was a great blog to stumble upon. I have a few dear friends with autistic children and it’s truly an amazing and humbling situation to behold. As someone who chose not to have children, being around kids is a novel experience for me at best. One of my closest friends was recently in a situation where he had to drive his 8 year old son from Wisconsin to New York city to have his annual evaluation to stay on a particular treatment plan for his gut issues. He and his wife had just added a newborn to the the family and couldn’t imagine a family trip. Being that I was off work preparing to leave the state he asked if I would help.
This would forever cement my friend as one of the greatest fathers I know. Throughout the trip there and back, not a cross word of complaint or harried attitude. Changing diapers, giving meds, keeping peace. We drove straight through, got a few hours of sleep, saw the doc. Aside from a trip to the ER because of a fall he took at the office, we were back on the road for the return.
I watched this boy go from a toddler with all the expected action and curiosity up until two years old. Then, to no longer wanting to play with m glasses and crawl up my leg and ceasing to vocalize. As audiophiles and musicians we found that the kid can do things with electronics that I’m sure the inventors never considered. He’s an amazing little man. They too will have to place him someday, they think, but are hell bent for leather until that day comes. Thanks so much for the level-headed yet inspirational writing you do.
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Hey Amy… Just got your message from TU blog. Thanks so much for the heads up on writing.com. Please shoot me an email when you get a chance. Would love to discuss.
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Our goal is to provide autistic kids laptops with special apps, I Phones with special apps, instruments, other equipment for communication devices and anything we can help these families with autistic children. We also want to be able to find their niches and what they are good at. We would like to provide adaptive services for these kids to learn and communicate better. It would be great to find out what these kids are good at. We are looking to go further than providing that kind of help. The more money we raise, the more we can help these children and families.
My name is Jasper. I am the founder of the charity and I am autistic myself. I am 23 years old and I did not get all the care I needed when I needed it. So because of this I made a decision to provide help because I am able to understand what most of the kids are going through and I want to be able to tell them that I care. I want to support and help them as much as I can. I am going to also share advertising revenue as well to help. I am a game creator and I build websites as a living as well. What gave me the idea is, because like I said, there is not much in VA but I would like to give the gift of technology read more
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Hi Amy, my name is Anna, I’m from Russia and I’ve been following your blog for quite awhile now (and I have read all the posts you wrote even before I joined you :). Of course I want to thank you for sharing your emotions and telling so much about your and Jonah’s life! The reason I decided to write you is that film that went out just recently. It’s a documentary (but a very unusual one as at some point the author actually becomes a part of the story) about a russian boy also having autism, struggling every day of his life. If you ever decide to watch this film I thought that maybe it’ll make you a little happpier and give you more strength facing difficult situations because it will make you realize that your life is really really great (even thought it’s tough sometimes), that your beautiful little boy is well taken care of, he smiles and he’s happy and even though he doesn’t live with you, he doesn’t have to struggle through every day of his life because he has so many people around who care and are willing to help and so many places built and designed to meet the needs of people like Jonah.I wish those kids in Russia had half of what you have! Unfortunately here having an autistic child is a tragedy for each family because no one cares about you.
So this is the film on IMDB
http://www.imdb.com/title/tt2358838/
And thank you again for the honesty of your posts! I do enjoy and definitely will continue to enjoy reading about your and Jonah’s lives.
Anna.
P.S. I hope you will get this right way, I’ve seen you can be pretty harsh on people leaving the comments you make not like, so in case of a possible misunderstanding (as I got the feeling I did walked on thin ice a little bit) I didn’t mean stuff like “come on! others have it so much worse so stop sobbing like a baby” 🙂 I just was deeply touched with the film and it made me think about you and Jonah so I wanted to share it with you. That’s what it’s all about! 🙂
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How can I follow your blog?
I am not completely computer literate but I NEED to read what you have written and will write. I lay in bed shedding tears for the child I love that sometimes scares me in his angry outbursts. Today was one of those days.
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Hi Nikki
Just put your e-mail address in the box at the top right of the page and hit the button, and you will be e-mailed every time I post. All the best to you – we are all in this together!
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Hi my sweet beautiful sister,
I have sat down many times to read your blog and have only made it through a few entry’s before I have to stop. It makes my heart sad and I begin to cry when I see all that you have gone through in your life. Jonah is such a handsome boy and it must be so hard not to be with him daily. I don’t think I would have had the strength to make the decisions that you and Andy have had to make. You are such a wonderful person and mother.
At this writing I have read all the entry’s to date and feel that I have gotten a new respect for you Amy. I have to add that I really love the picture of you hugging Jonah and you with the haircut with bangs, so cute I wish I had that photo.
I love you so much my sweet sister – your brother is always here for you!!
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I have just read your blog and sit here with tears running down my face. I am a single dad ,elderly, not in the greatest health who must find a facility for my son. Recently my daughters informed me that they would not be able to care for him. This has brought me to tears each nite as I tuck him into bed, kiss him, tell him how much I love him.This news came as a shock to me and at my age has been devastating. Will you consider giving me the agency where your son resides? Please
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Hi George
Thank you for reading and commenting. I’m so sorry you are facing this situation but there is assistance out there. Jonah is at the Anderson Center for Autism in Rhinebeck, NY. Please write to me at winklett@hotmail.com and I’ll do whatever I can to help you!
Amy
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Hi Amy
Just reaching out again. I think of you and Jonah and read your blog. Would love to get in touch
Tamkayla0@gmail.com
Tammy Blanchard Sprague
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What really aggravates me to no end is that there is this whole movement to close all state-run developmental centers with NO concurrent establishment of permanent, no refusal, concurrent community choices. Every agency in a state can absolutely refuse to take any disabled person saying…oh…we cannot (aka chose not to) support that person with their level of needs. Unbelievable. In my opinion every agency should have to have one CILA or placement with adequate supports, staffing, state funding and no refusal.
Same with the problem of psychiatrists being able to decline treating people with autism because “they are not accepting any more patients” having asked what insurance they have first and will always say this if it is medicaid or medicare based insurance.
Why is everyone allowed to refuse? And further, there are building solutions designed/implemented that work (George Braddock). Why aren’t the states using these for the walls, windows etc. instead of allow materials that keep breaking. OK I have to stop now before I write endless words on this topic. So glad these moms are telling the truth so clearly. I am friends with a mom and her son who has a severely autistic son I’ve known for years. This is truth.
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