This post might have been better saved for next month's Autism awareness, but this exhausted Mama needs to vent to her friends in the Steemit community for a second.
Our 4 year old son is simply amazing.
Usually a very joyful child, he has the emotional maturity and mental vocabulary of a 5 or 6 year old, but the speaking ability of a 2 year old. He's also a handsome boy, if I do say, with a mixture of his Daddy, @winstonwolfe, and my late older brother, whom I miss very much.
Last night, 4am, Cam awoke in a panic, and was trying desperately to tell me between sobs what was wrong in the limited number of words he can say. "Backpack!! Shoes & socks!!"
He ran to the living room, still sobbing, grabbed these items and rushed to the front window, completely confused to see that it was still dark outside, which made him sob harder.
"Baby, what happened? What's wrong?"
"School today! Backpack! Shoes & socks!" He shoved them in my hands and jumped up on the couch.
"It's not time yet." I say, trying to reach for a hug, "We have to go back to sleep and wait for..."
This is where the hitting and slapping starts. He’s so frustrated about not being able to communicate. So, I started joint compressions and massaging his arms and legs.
It takes several minutes (several minutes feel like hours at this point), but he finally calmed himself. By this time, @winstonwolfe is awake and on the couch with us, too.
In my sleepy haze, I finally realized that he must have had a dream about missing the bus. A totally normal kid thing, complicated by the autism barrier.
Now that he's a little more calm, I ask, "Did you have a bad dream? Did you dream the bus drove away without you?"
He cried out and covered his eyes with both hands.
I spent a few minutes explaining the process very simply, “The sun will come up, we'll get dressed, the bus will come and take you safely to school.”
As I repeated these steps to him a few times, he became visibly relaxed. I took the opputunity to explain that dreams aren't real, and I think he grasped that, too.
He spent the next 4 hours playing in his room, waiting for the sun to come up and the bus to come and take him safely to school.
Mama put on a pot of coffee and started her workday a little earlier and a little more tired than usual.
Lately, I've been feeling the loneliness of being an autism parent. (Then feel guilty for feeling that way because I know it's so much harder for my boy.) When he was younger, his differences weren't as easy to notice to other kids and their parents. But now, all of that is changing and I feel disconnected with my friends who are parents of neurotypical kids.
Next month is April and that means Autism Awareness month. In honor of such, who feels like joining me in starting a Steemit Autism Support Group??
I would love to hear your stories of struggle and courage!! I want to see #autism in the trending tags!!
In fact, as an exhausted Mama, I need it.
Who's with me??
Write a post, tell your story or just say what's on your mind, and give it the autism tag. Link it in the comments below, and I will spread it as far as I can!
We are not alone.
My heart goes out to you and your husband. We didn't have half the hurdles that you have had and yet we were exhausted. We ended up homeschooling which has worked out wonderful. Not promoting - everyone is different and not all situations allow for it. It did make things easier for us in the aspect of unsupportive teachers in our son's school. Not easy. I've had many friends that have autistic children that have made great strides - of every variation/ every type of therapy....I've witnessed it all and the extreme amounts of dedication, time and exhaustion, heartache the parents go through on this journey.
Here are some links that you might find useful.
https://www.facebook.com/scottshoemaker/videos/vb.1642634120/10207901697173971/?type=2&video_source=user_video_tab
https://recoveringkids.com/
A glimpse of one of my good friends' journey with her severely autistic son - he is now 21 and has his own business! There are always silver linings when love is involved. Rebecca is a great person to connect with and hopefully get on steemit. Very active in the autism community and beautiful heart.
https://www.facebook.com/beautifulblawesome/?pnref=lhc
Much love to your family and a big hug from me for being such an attentive and aware mama.
Thank you so much, @youhavewings! We struggle, but not nearly as much as some other autism families. I know it sounds cliche, but I really do feel lucky to be his mom. There are so many little moments that make it all worth it.
I've recently started researching the biomedical techniques and ACC protocol to see it it is right for us.
I completely understand. So excellent that you are looking into these things. I know this route costs a lot of money out of pocket - shouldn't be that way. But it is worth every penny if it works for you. Have a wonderful evening.
Best fucking kids on the planet! Such raw emotion out of such tiny bodies. You can't help but love them to pieces and tell those who can't see the truth where to stick it.
I love this share more than words can express. Just as his loving little body will tell you, don't worry mom & dad.
Thank you, @erodedthoughts. They have amazing ways of speaking volumes while saying so little, don't they?
It's been a curious little puzzle trying to figure him out, and I know being a parent has its challenges no matter what type of child you have, but I sometimes wonder if I would have this much fun (or see the world the way I do now) if I were parenting a neurotypical son.
Thank you for your kind words!
They are all amazing no matter which way they come out. Each one you have will also make your outlook and life opinions change. Every damn one of them is an angel and a demon trapped in one body. They are all different and unique and the greatest gift two people can share.
Don't ever feel alone on here. @winstonwolfe has my chat info. If I am on feel free to message at any time.
That's my little boy. :)
Thank you for sharing your life with us.
We are waiting on our final diagnosis for our son. I am sure he is autistic and at first that diagnosis scared me. Not for our ability to accept it, not for fear of what life held for him, but the stigma of it to the outside world. People outside of our house, have already been very rude. I can't imagine when he is alone, when he is older, or if he does go to school.
I was thinking of starting to blog on here about our experience with our son, our experience with the medical/diagnosis process, and as we venture into the treatment. I hate all those words; it makes it sound as though he has this rare, horrible disease. To me it is what makes him, him. He is unique. There is no "normal" and once people understand that and stop categorizing people into these sections, the world may be a little better place to live.
Thank you again :)
I remember when I started realizing there was something going on with my son and researched so much online before I ever saw a Dr. They gave us a Sensory Processing Disorder diagnosis at that time, but they wanted to wait until he was 3 to evaluate for Autism. But I already knew. The signs were there from the very beginning.
I remember a couple of months of severe depression and guilt. I felt like I was mourning the loss of a normal life. In a way, I mourned the loss of the son I thought I was going to have.
After being on a waiting list for over a year (there's a shortage of child psychologists in our area), we are finally getting our full diagnosis in two weeks. Now, my only emotions about it are that I'm ready to hear the detailed results and excited to start new therapy. A little nervous about how busy our lives are going to be.
As far as rude people go: when my son was little, I used to take him to an inflatable bounce house place almost every day because it was up the street from our house. I was always so on edge because the other kids would just run over my son, cut in front of him, step on him, and the parents were always defensive and crude. One day, I happened to stop by when the place had been taken over by a special needs school on a field trip. That day, everything was completely different and I got my first taste of what being part of the special needs community is really about. All of the adults were smiling at my son and acknowledging that he was there, the kids were sweet and patient, and everyone was watching out for everyone else. I felt like I had stepped into a different world, and in a way, I had.
It takes a village to raise a child, especially one with special needs. The rest of the world only understands this if they are living it, too.
When I took Dre to the peditrician with his 11 month older brother, they gave me a paper to fill out for Autism. Snow passed it, but I also did it for Dre. I had suspicions then and he was 2; he failed it. I told the peditrician when he came into the room and he laughed and said those test give more false positives then real ones, just ignore it. He explained that since Dre was playing with his shirt while he was talking to me, he in no way could have Autism. I changed doctors a year later, when he told me my son's speech delay was my fault for spoiling him and being an anxious parent. If I would just learn to relax he would start talking.
When I moved doctors and started asking other doctors outside of peditricians, I found that there are only certain doctors, in our state, who can diagnose Autism, not peditrician. The peditricians in our state are not trained for it. That is why they give the test in our state so if they don't pass it, the pedtircian is to refer them to the specialist for a diagnosis. Needless to say his diagnosis has taken 2 years due to an incompetent doctor.
That is why I want to blog our journey because through talking to people and reading others stories online, I am learning we are not rare. I also want to help people understand that not all Autistic children are the same. My meaning is, when the specialist called to schedule his final appointment for his diagnosis, she asked if I would need help holding him or need help during his tantrums. I said no, he is a very calm child and really laid back. She was like oh, um ok. It was though she did not understand.
Dre is in speech therapy and he does well and I have found that this is a challenge also. Finding the right people who are there to give the best care and not just for the paycheck. She is our second one, the first just blew bubbles and talked to me about her life. We have also found that he does better on a slower schedule with her. Instead of twice a week, we are now going once a week. He talks more and engages more when he doesn't go. When he does go he punishes us by not talking for a day. It is all a learning game :)
Oh my god! he is the most beautyfull kid I have ever seen! I´m glad to read your experience, this makes me learn! please count on me to support whatever activities you are planning for next month!
Good to see you here, @arteagaile! I loved your letter to your autistic son, and I just resteemed it.
I am still trying to figure out good ways to raise awareness next month, especially on Steemit. I'm open to any suggestions !
Wow thanks for sharing your story! You're so brave! All my best wishes go to you and your son!
Thank you, @clivealb! I'm hoping other Steemit members will join me in sharing their stories!