When the journey is hard, blogs by parents who have been where you are offer comfort, inspiration, support and hope.
Advice for Parents With a Newly-Diagnosed Autistic Child–By Rina
(hosted by Emma's Hope Book)
The other day I read a wonderful piece of advice written by Rina, a friend of mine, who is Autistic. Rina’s thoughts were what I wish I’d been told when Emma was first diagnosed, so I asked Rina if I could share them and she, very generously, gave me permission. Rina’s words also reminded me of Kamila and Henry Markram’s Intense World Theory for Autism, which was the first “theory” I read that finally made any sense to me or even remotely reflected back what I was seeing in my child. READ MORE
(hosted by Emma's Hope Book)
The other day I read a wonderful piece of advice written by Rina, a friend of mine, who is Autistic. Rina’s thoughts were what I wish I’d been told when Emma was first diagnosed, so I asked Rina if I could share them and she, very generously, gave me permission. Rina’s words also reminded me of Kamila and Henry Markram’s Intense World Theory for Autism, which was the first “theory” I read that finally made any sense to me or even remotely reflected back what I was seeing in my child. READ MORE
The 11 Best Pieces of Autism Parenting Advice
by K8 Librarian
I googled for thousands of hours to uncover these gems, I hope they help you as much as they helped us! I wrote this article as a catchall to share with friends or friends of friends that are looking for our story of our success. I dare to call it success because at age 8, Brady is doing GREAT. He understands himself, he advocates for himself (sometimes), he is making friends and treating them like friends, instead of like interchangeable people that share a common interest. This is a very exciting year for us, because it is a validation of parenting off the map. There really isn’t a parenting map, but there is the illusion of the map. When Brady wasn’t keeping up with his peers, it was a scary time for us–and every horrible thing we read or heard sounded possible. It’s not scary anymore. READ MORE
by K8 Librarian
I googled for thousands of hours to uncover these gems, I hope they help you as much as they helped us! I wrote this article as a catchall to share with friends or friends of friends that are looking for our story of our success. I dare to call it success because at age 8, Brady is doing GREAT. He understands himself, he advocates for himself (sometimes), he is making friends and treating them like friends, instead of like interchangeable people that share a common interest. This is a very exciting year for us, because it is a validation of parenting off the map. There really isn’t a parenting map, but there is the illusion of the map. When Brady wasn’t keeping up with his peers, it was a scary time for us–and every horrible thing we read or heard sounded possible. It’s not scary anymore. READ MORE
A Diary of a Mom
"...I need you to know that I get it. That I really, really get it. That for years upon years I wrote about how I yearned for a conversation with my child. About how it terrified me that at six, she still didn’t respond to her name. About how her only words were those she’d just heard and parroted back in a meaning bending echo. About how half the time I could not for the life of me figure out what my girl was trying to tell me with her isolated sounds and frustrated shrieks." Read more
and
"The book that I am reading, and can’t stop talking about, I Might Be You, was written by Barb Rentenbach. Barb did not have what we presumptuously like to call functional communication until she was nineteen and began using facilitated typing. At seventeen, she started, for the first time, to think in words. In her thirties, she published a book that I can’t stop talking about — not because it was written by someone who didn’t previously have words, but simply because it’s THAT good. Please, stop for a moment and take that in before you continue reading. It matters.
There are no limits, there are no deadlines, there are no closing windows that can’t at the very least be propped open with faith, persistence, patience and love."
"...I need you to know that I get it. That I really, really get it. That for years upon years I wrote about how I yearned for a conversation with my child. About how it terrified me that at six, she still didn’t respond to her name. About how her only words were those she’d just heard and parroted back in a meaning bending echo. About how half the time I could not for the life of me figure out what my girl was trying to tell me with her isolated sounds and frustrated shrieks." Read more
and
"The book that I am reading, and can’t stop talking about, I Might Be You, was written by Barb Rentenbach. Barb did not have what we presumptuously like to call functional communication until she was nineteen and began using facilitated typing. At seventeen, she started, for the first time, to think in words. In her thirties, she published a book that I can’t stop talking about — not because it was written by someone who didn’t previously have words, but simply because it’s THAT good. Please, stop for a moment and take that in before you continue reading. It matters.
There are no limits, there are no deadlines, there are no closing windows that can’t at the very least be propped open with faith, persistence, patience and love."
“caregiver burnout” by Love Explosions
I dislike the term “caregiver burnout.” To me, it carries a very negative and connotation about the person being cared for. It also seems to imply some sort of culpability on the person under care which makes me super uncomfortable in a way that I cannot articulate.
It makes me so sad to see people using this term to describe themselves and all that it implies about their Autistic children. And families. It makes me sad that these stories of hardship dominate the conversations about Autism because it gives the impression that there is no alternative to this way of life–to this emotional state of being when you’ve got an Autistic family member. READ MORE
I dislike the term “caregiver burnout.” To me, it carries a very negative and connotation about the person being cared for. It also seems to imply some sort of culpability on the person under care which makes me super uncomfortable in a way that I cannot articulate.
It makes me so sad to see people using this term to describe themselves and all that it implies about their Autistic children. And families. It makes me sad that these stories of hardship dominate the conversations about Autism because it gives the impression that there is no alternative to this way of life–to this emotional state of being when you’ve got an Autistic family member. READ MORE
HOW by a Diary of a Mom (re. Anxiety)
Yesterday, I wrote a post that said this …
(Ed note: If you haven’t read it yet, please click HERE so that the rest of this will make sense)
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Yes, this life is a roller coaster.
A big, scary, exhilarating, exhausting, beautiful roller coaster.
And it looks something like this …READ MORE
Yesterday, I wrote a post that said this …
(Ed note: If you haven’t read it yet, please click HERE so that the rest of this will make sense)
~
Yes, this life is a roller coaster.
A big, scary, exhilarating, exhausting, beautiful roller coaster.
And it looks something like this …READ MORE
