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alainajoy's blog

Winter

submitted by alainajoy

Lets start back in November. Jacob was doing wonderfully. Good communication, hardly any meltdowns, American Sign Language progressing nicely. It was all good . We had a doctor's appointment towards the end of the month, and I was pleased to report no med changes were needed, everything seemed to be flowing smoothly and peacefully at the Jones home.


Thank You

submitted by alainajoy

Its only 5 pm, and already the food has been eaten, the company has left, and most of my family is napping with full bellies.
I have so much to be thankful for in my life. Health, home, employment, a partner who loves and respects me, children that I laugh with daily, and God who gives me all of this.
I am particularly thankful tonight for an encouraging, understanding support system. The teachers, caregivers, family, friends and even strangers who help me keep my chin up when the going gets tough.


Together Time

submitted by alainajoy

I had an article published on a parenting website this week. Nothing about autism is included, but being a mom in general and how we can be better. I'm so excited to share it!
TOGETHER TIME
It's hard for a mom to catch a break during any point in her life. In the early years of parenting, constant demands are heaped on us from babies and young children who rely on us for their every need. There are months, oftentimes years, when a mom's much needed sleep is interrupted by a child who wants something, even if it's just a sip of water or a kiss goodnight.


Finally!!

submitted by alainajoy

Jacob has a friend. Wait, let me say that again. JACOB HAS A FRIEND!!!
This is big. Kids like Jacob generally play side-by-side without much interaction. We have watched him play next to but completely ignore other kids for years. I have spent so much time protecting other children from him and making sure they have an acceptable distance between them, and that doesn't lead to much bonding with the children around him.


Balance

submitted by alainajoy

Sometimes I get stuck thinking that things with Jacob are so hard, so emotionally draining that it will never get better. The 60 minutes of aggression outweighs the other 23 hours of relative ease and becomes the focus of my day.
I think this is fairly normal- an overwhelmingly intense event stays at the front of your mind and milder, more typical things take a back seat. The physical pain of being bitten or hit gradually subsides, but the emotions that go along with having to defend your self from a child don't disappear as easily.


Flight Time

submitted by alainajoy

We had a great experience a few weeks ago that needs to be shared. Last month I was doing some exploring of websites that come up when I google "autism" and I found an ad for a nonprofit called Challenge Air.
Challenge Air is a group that organizes events where children with disabilities of any kind can experience flying in- and sometimes piloting!- a small airplane.


Not Too Late

submitted by alainajoy

I shouldn't blog when I have PMS. I'm much happier and more level-headed today than I was a few days ago when I whined and proclaimed my-autism-is-worse-than-your-autism.
What sparked my pity party was the comment I received from an acquaintance at church: "You could change it if you had enough faith."


Where Are The Stories Like Ours?

submitted by alainajoy

It is extremely frustrating and disheartening when I go to do an online search for books, new releases that focus on autism, and every single book that comes up is the story of how a child was "cured."
They can't all be cured. They can't. And don't tell me that its all due to the hard work of a parent, or the miracle of Early Intervention. Maybe your kid just didn't have it as bad as my kid does!


Yay for progress!

submitted by alainajoy

Sunday, June 20, 2010
The past few weeks have been a big roller coaster of highs and lows. After the unexpected, abrupt, cold-turkey end of a medication that Jacob has been on for 3 years, we dealt with quite a lot of withdrawal symptoms including some intense, unrestrained aggression and a Grand Mal seizure.


A New Challenge

submitted by alainajoy

Jacob had a seizure last night.
He was lying next to me in my bed, after sneaking in at some early hour after I had fallen asleep. I didn't even realize he was there until I felt his body convulsing next to mine.
It took me a moment to figure out what was going on. By the time it was over only 45 seconds had passed. He didn't seem to wake up from the seizure, and slept peacefully by my side the rest of the night.


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