Our Family - What A Difference A Year Makes

Estee, at The Joy of Autism, recently posted about how far both she and her son have come in the past year. She invited readers to comment about what their year has been like. Since I just passed the one-year anniversary of blogging at the end of January I feel like I have a lot to say about this topic. I didn't want to "overload" her comments so I decided to do my own post about this.


A year ago I was consumed with Samuel's situation at school. Now, he is no longer at school. I teach Samuel at home. While I don't have to worry about the lack of communication from teachers and aids anymore, I do have the daunting task of trying to figure out where Samuel is academically, and to find work for him that is appropriate and meaningful. It's worth it though, I like having Samuel at home. I want my family to live a family-centered life. I value having a good community around me, but I don't want my family life dictated by that. So much of the activity of life seems to take us out of our homes these days. I am enjoying just staying at home for now.


A year ago every day was hectic, rushing Samuel to school, racing home to do school work with my oldest son, getting out for piano lessons, music lessons, soccer, shopping. We spent a minimum of 80 minutes per day in the car just taking Samuel to and from school. That's not counting the 10 - 20 minutes I had to prepare ahead of time getting ready to go out. I tried to cram all kinds of things in to the time when Samuel was in school and it was easier to get out and about with the other kids. Now we don't have that every day craziness. We don't get out as much anymore. We have dropped the music lessons and my son now has piano lessons at home. Now if I need to go out, I have the option of taking Samuel with me (along with his personal attendant) to teach him appropriate social skills. There wasn't much time for that kind of stuff in past years.



A year ago we had help (through funding from the county I live in) for 9 hours per week from in-home therapists. They were contracted out by our county from an autism school. Now, a year later, we no longer have this county funding (because I withdrew Samuel from school) . Instead, we obtained a Medicaid waiver for Samuel and I was able to hire a personal attendant to work with Samuel and be of assistance to me. We have two people who help us right now and their help has been wonderful. The help I get now is very different from the help I had last year, but it is good help. It makes our school days at home manageable and they help to keep Samuel busy.

A year ago we had just stopped sitting in the cry room at church. We have never gone back to sitting in the cry room. Many weeks Samuel can stay in church for all of mass with only one or two breaks. His outbursts in church are only occasional. Last week we were even able to go to a different mass than our normal time. It is more crowded and there is music. Both of these things would have made mass intolerable for him a year ago. Now he is doing much better. He has even started saying the "Our Father" in the past couple weeks! Several years ago I remember asking one of our in-home helpers how on earth I'd ever get Samuel to behave well in church. Since then I have SLOWLY followed her suggestions, one of which was picking out ONE prayer for Samuel to say. The Our Father was it! I have used a child's book and a laminated page from his religion book as prompts to say the prayer so it's nice to hear it being prayed out loud by him!

Samuel seems to enjoy being at home. He has become much more emotional and dramatic in the past year. He can get into some pretty despondent moods, which can be kind of disturbing, but I see it all as part of his development. We make those moments opportunities to learn how to control his thoughts and self-regulate his behavior.

What is coming up in the year ahead? I'll continue my search for a behavior specialist to assist me with Samuel. I'm also checking into using RDI for Samuel. As Samuel gets more compliant in doing his work and other activities I think RDI will be "do-able". I'm also veering more towards using Charlotte Mason methods in my homeschooling. I'll be doing my best to stay a step ahead of ALL my children!

What on Earth?!

Today was about the craziest day that we have had in quite a while. It started with a bit of a different twist, Samuel's personal attendant came a little earlier and was only scheduled to stay for a few hours. Samuel had asked for Banana Bread yesterday, so I thought he would enjoy helping me make some this morning. He likes cracking eggs, so I let him do that (silly boy, he said "ouch, I'm going to die!" when he cracked them!), he mashed the bananas, and got to measure out flour (which he played with more than he measured!).

Anyways, with the different start to our day perhaps Samuel took this to mean that he would not be doing school work today. I didn't put any school work on his schedule until his personal attendant was due to leave, and Samuel had a fit when he saw the "work time" icon on his schedule. I had scheduled "Lite Brite," a toy he has recently taken an interest in before "work time" which I had thought he would enjoy. No such luck, he protested that too and was caught up in some major scripting during this activity. I cut it short and we gave Samuel lots of run around and playing time down in the playroom. Samuel requested a "break" before I started his school work and he spent much of it crying and talking as though he was depressed. Sometimes when Samuel is in a mood like this he will borrow a term from one of his favorite TV shows, "Wow, Wow, Wubbzy," and he will say "I have the bluey blues!" He didn't say that today, but he was sure acting it!

The second session of school work was preceded with another break, equally as teary for Samuel. I got out his Wilbarger Protocol brush, something I haven't used in a long time, and tried brushing him. He was a bit sensitive to it, ticklish, but he seemed to like it and that calmed him down a bit.

I saved Samuel's favorite subjects, Religion and Reading (from his reader) for last late this afternoon. It took longer to get through the work, but we eventually did it. Good news, I have been able to use the Religion textbook with Samuel recently, and haven't had to re-type the lessons on "Writing With Symbols". That is such a big help! It takes lots of time to re-type lessons. Samuel was in a much better mood tonight.

I have told Samuel we are going to take a vacation from his videos and DVDs in a few weeks. He is scripting them way too much and he is just way to absorbed with them. When this happens he gets very ornery and doesn't want to be "bothered" with anything. Before we start the "vacation", I'll start putting some of them away. He has collected over 20 of them and tries to look at them throughout the day.

Oh, in between dealing with Samuel today I had the "pleasure" of an equally ornery 5 year old boy, son number three. He is very particular about the clothing he will wear these days. He protests everything except for shorts and short sleeve shirts, in the middle of the winter?! He was also very unhappy today when I sat him down for some school work, at a time he wanted to go play with another of Samuel's personal attendants (who he thinks are there to play with HIM, not Samuel!).

My oldest son was a little tired today. We let him stay up late last night to watch "Life After People" on The History Channel. I watched a portion of it as well. It was fascinating, but kind of creepy, watching how all signs of human civilization would decay and slowly disappear if men were no longer on the Earth. I got caught up in wondering, "Well, how would all people disappear?" They did not get into that on the show, people were just already gone.

I'm glad today is over, this was a rough one!