Friday, October 11, 2013

One of the most common questions

In one of the support groups I am in, a question was brought up from a fellow autism mom. I had not really realized it, but I think this is one of the most common questions that people have asked me. Since many of my readers may not feel comfortable asking, but would be curious to know, I thought I would basically post it here. "How did you feel when your son got the diagnosis?"

Monday, August 5, 2013

T minus 21 days....

School is about to be back in session! I cannot express how happy this makes me without someone wanting to punch me in the face for making the blog a little too long. Cameron had a bit of a rough start to summer, and so did I. I had serious anxiety over everything. FYI, WebMD and Google are NOT your friends all of the time. Sometimes they make you stay up at night feeling like live bait in a shark cage off the coast of South Africa during the filming of shark week. Or, at least, that is the best way I could describe the beginning of summer..... I saw a doc, got on some meds and feel less agitated.
I wasn't picking up on a lot of Cameron's subtle clues, and that was causing some serious meltdowns, and the fecal smearing. With a few tweaks to the schedule, and a more watchful eye for certain clues, life has been manageable. It helped to have some structure in his routine, and to not stay at home too much. He is too active to stay cooped up inside all day. He craves different environments. I can't really blame him. I am the same way. From the last week of June up until last week, we did a Kids day out program that seemed to help greatly. Both boys loved going, and I enjoyed working with some great kids, and great ladies. It was good for me to get out of the house too.
The biggest change I have seen this summer was when he began requesting for things in sentences. This happened for the first time with a teacher at Kids day out, and again, a few times at home since. He also shocked me a few weeks back. He has sung the abc song for a while now, but mumbles through a lot of the letters, so I assumed he was just singing a song and not correlating the letters in the song to the actual letters of the alphabet. He has a toy train with alphabet letters on blocks that you can stick in the train and it tells you the letter and sound. One night, we were sitting in the living room and he began approaching me with letters from his train in his bedroom. He would show me the letter, then TELL me the letter. He did fantastic! He would run back this room and grab a random letter and repeat. The toughest letter for him to say is X. We are working on it, and it is getting better. At first it sounded like "it", but now he is sounding it out, so it sounds like "eeeeehhhhhhkkkkkk SSS" with an almost silent s sound at the end. He will get it though!
This gives me so much hope. He can now master these letters, and i look forward to him spelling his full name, and typing or writing simple words. It may be a while off, but you have to understand something..... We had hope, but we also read and saw dozens and dozens of stories of children on the autism spectrum who reminded us so much of our son who couldn't accomplish this much, either EVER, or not until adolescence.
So, with a summer like this, I can only imagine the possibilities this school year.

The morning routine

I Wake up to screams. He wants his special milk. While he sips, dress him for special education preschool. He still wears a diaper, and I struggle to change him as he lays there like a limp rag doll drinking from a sippy cup designed for a baby. I pay special attention to his clothing, avoiding things like shirt tags and sock hems. I get a special greeting, as he flaps his arms and nods his head, then sinks into my chest for cuddle time. Next comes hair and teeth, as I pay special attention to his aversions to these tasks. Spend some time feeding and dressing little brother, but not as much, since he is more independent. Trade spots with my husband so that I can dress. The day is planned with special care and consideration. Off to school and therapies, then back home to do chores and spend some special time with little brother. Time for school pick up at his special designated time and location. Snack time with special foods approved with his special quirks in mind. Encourage playtime with brothers so they can develop a special bond. Work on special tasks to help develop everyday life skills.  A special dinner, spoon fed to to him, a calming bath after a 2 hour meltdown, and finally, bed. It is midnight, and I can only think of how special the day ended up being. He is almost 4 years old, and he said his first word today. As routine as this day was, it was also special. I cannot help but feel weary, drained, elated and hopeful. Tomorrow will be special too.  

I  wrote this several months back, and I thought I would share it with you. I can remember thinking as a young teenage girl... " I will NEVER lead a boring and mundane existence!" And you know what? I my life isn't anywhere near boring or mundane. :)

Saturday, June 15, 2013

Autism Dads

Father's Day is tomorrow. I wanted to point out a few things that separate Autism dads from the pack, and in my eyes, makes these men the Worlds Greatest. How did I get so lucky to marry such a great guy?
Here's just some of the things that my husband does:

You get down in the floor and play with your kid the only way you know how to.
It is okay if he doesn't look you in the eye.
Instead of t-ball on the weekends, it's walking side by side during hippotherapy.
So what if he is scooting around in your 200 dollar new dress shoes? He's imitating!
You jump for joy when he talks to you or greets you at the door.
"UP" means a workout where your child is the deadweight, and you do this till you can't anymore.
You buy and set up the biggest trampoline that can fit in the yard so you can jump with him too.
You don't hide his diagnosis
You walk with him and FOR him.
Bathroom time is now community time, and you don't care if he stares you down while you go.
Sometimes he feeds you food, although sometimes I wonder where he found that cracker at...
You reach out to help other families like ours by spreading knowledge we have learned along the way
The stares in public don't seem to embarrass you any longer.
It amazes you every time our son uses a spoon to eat, and he is 4.
You work long, late hours to allow me to stay at home to work on therapy.
Weekend Activities are planned around our sons and their interests/ability
You have spent hundreds of hours reading online and in books about autism.
You are man enough to admit your biggest fears
You are a rock when I need you the most
You are involved in every aspect of your sons life.
 He is not an embarrassment, mistake, or punishment. He is a gift, and you treat him so.

Sunday, June 9, 2013

It's been a while

Blogging has helped me immensely. I haven't been on to write a new blog in nearly 6 months, but I need to be better at committing time to this. Blogging helps me vent, and let go of things. It is great for my own mental health as well.

On that note, I have been in a huge funk lately. Everything has been building up, and I have talked with the hubby that maybe it is time to seek a professional's guidance. I have been chronically and seriously depressed. I am at the point now where even if I won a mega millions jackpot, I might smile for a few, but then complain about all of the problems the money could bring. Rather than gripe about my problems in here, I am going to spend the rest of this blog speaking of the amazing accomplishments and things that have happened lately.... And save the misery for the doctor.
So in 6 months time, Cameron has explored and eaten a few more foods, he has said a TON more... Some of what he repeats is a little embarrassing, but what toddler/preschooler hasn't said something a bit embarrassing?

Casey has had a verbal explosion, and his favorite words lately are "NO", " PLEASE", and "THANK YOU". Guess who is copying? Yup. A big win in my book. echolalia or not, he is understanding that he can speak and express his feelings. He will say " Casey stop it" anytime he is mad or doesnt want something. I guess he has heard me say that phrase a lot... afterall, Casey is a typical 2 year old getting into EVERYTHING in sight. I just thought i had my house babyproofed u til he came along!

Another great moment.... Potty training. Both boys are soooo close. Cameron worked all year on potty training at school. The last few weeks of school, he was going with almost no accidents during the school day. He would come home, and I wasn't rigid enough with the potty schedule, so he didn't do so well here BUT now, if I tell him "go potty", he goes to his bathroom, lifts the seat, takes his pants off, and scoots onto the seat and pees about 80 percent of the time. Casey sees Cameron getting serious praise for the potty skills, and has said " pee pee potty", so I stick the toilet ring on, and take off his pants and diaper, plop him on, and about 50 percent of the time, he actually pees. I am hoping to have one, if not both boys daytime trained by the start of school.
This summer, I will be Cameron's teacher for a parents day out program. I feel like he will get more out of inclusion in a regular program with guidance from someone who really knows how to handle him. Since most of the teachers that run the summer program are younger and college aged, the director and I felt it would be best for me to be in his room, rather than teach somewhere else and run the risk of Cameron melting down and flipping out on his teachers. At least of it is me, I know how to handle it.
Cameron had an outstanding teacher, aides and therapists in this past year. He grew so much, that they named him most improved student in his classroom.  He also grew so much in this past year. I let his hair grow out, and boy o boy, the curls!!
I also attended the autism conference for the region. I saw a few other parents out there, but it was mainly administrators, general Ed teachers, special education teachers, and therapists. I heard Temple  Grandin's mother speak, ( here is a wiki link incase you have no clue who she ) I learned a few techniques that I could try with Cameron in a few other seminars.
I thought I would leave you with a picture. Look how much he has physically changed. Next blog,  might include some video so you can see for yourself how far he has come developmentally. It has been a moving and powerful year.

Thursday, January 3, 2013

Holidays are over... Sorta

For most people, the holidays came to an end yesterday. The new year is here, and life is getting back into the swing of things. For our household, "normal" will not return for a few more days.