Between School Years

I have mentioned before that school is an ongoing, year-round endeavor in our household. We take breaks when there are special events, holidays or vacations. We also run on a relaxed schedule during part of the summer. That is where we are with school work right now. Samuel is participating in a "speech camp" this week and his older brother is participating in a "history camp." Both of these occur in the morning. In the afternoon, after we have had our lunch and taken a rest, I come up with a bit of work for the boys to do. Samuel has been filling in his calendar, writing in a journal, finishing up his religion book. I also found some workbooks at a wonderful teacher supply store up in Maine.



The store where I got the workbooks is called Play and Learn Toys and Teaching Resources and it is located in Freeport. It has become a family tradition to visit while we are on vacation here. My children love it for all the cool toys. They have a fun Thomas the Tank Engine display and it kept them entertained while I took a long look at the teacher supplies. I am always so tempted to buy all kinds of posters, workbooks and bulletin board supplies, but this year I restricted myself to just a few workbooks and stickers. I will have Samuel work on the two books shown in this photo during the month of August. They are both from Carson-Dellosa Publishing. I really like the "All About Me" book. It is 64 pages long and in it he gets to draw all kinds of pictures and fill in blanks to tell about himself. It's a pre-k to grade 1 level and it is perfect for Samuel. It's easy, the pages are visually "do-able" for him (no color or distracting pictures) and the assignments are short. Also, there is a sticker chart built in to the back cover of the book. I am hoping that Samuel will enjoy filling it in and feel a sense of accomplishment. I'm looking forward to him completing the pages where he tells us what his favorite color is, and what he wants to be when he grows up. He doesn't usually talk about these kinds of things on his own. (In the past he has answered "firefighter" when he is asked what he wants to be when he grows up. I'm curious to see if he'll say that again. It's hard to know if he really means it. He never demonstrates that outside of being asked that question. I wouldn't put it past Samuel to just say an answer to get people to stop asking him the question.)

The Scissor Skills book is also very easy, at least it starts off that way. It looks like it will get much more appropriately challenging as he works through it. I ended up getting scissor skill books for Samuel's younger brother and sister as well. I never would have allowed my two oldest boys to try scissors at age 2, but I am comfortable letting my little girl, age 2, do so now. I make sure she only tries it while I am close by at the table with her. She just loves "working" at the table like her big brothers do!

My big job for the month of August is to write up a new IEP for Samuel, choose and order curriculum materials for him, and organize work for my two other sons. I already have their books. This is the first year that I am using a pre-organized curriculum for both of his brothers, in which I "enrolled" both boys and will send off some of their work for grading. I may end up ordering some of Samuel's workbooks from the same place, but there is no way that he can follow a packaged curriculum.

Overheard from the Boy's Room

Poor Samuel. He's extremely tired this evening but is being engaged in conversation by his brothers. They are in their bedroom and the lights are out but they are still talking. I'm not exactly sure when Samuel woke up this morning. My husband couldn't sleep last night so he got up in the middle of the night to do some work and to call co-workers from his company headquarters over in England. Anyways, my husband's activity woke Samuel up, possibly as early as 4:30 this morning. Samuel had a rough day getting through his school work. He got upset during his first session of work so I had him take a break up in his room. He almost fell asleep as he lay on his bed. The rest he took helped and he was a bit more cooperative the rest of the day.

As I listen now, my oldest son is trying to entertain his brothers. The conversation he is having with Samuel has to do with an activity he did today, playing with his Lite Brite. I'm trying to figure out if my oldest son is pretending to be a detective or a reporter: "So Samuel, I understand you did an activity at the dining room table today, what was it?" Samuel answers (sounding half asleep) "Lite Brite." "Now I also understand that you only had to put a certain amount of pegs in it, how many?" (Yawn) "Five." "And what was it that you were making on Lite Brite?" "Patrick" (from Sponge Bob)

I love that Samuel is putting up with all the questions and carrying on a conversation with his brother like this. I also like that big brother noticed what Samuel was doing today and could ask him about it!

Since Samuel wasn't so eager about Lite Brite the other day, I attached some strategy to it today for his personal attendant to use. I wrote out .."You are going to play with Lite Brite two times today. Each time you will put in five pegs. Make a tally mark for each peg you put in." Samuel's attendant helped him make the tally marks, and the "strategy" seemed to work. Samuel cooperated much better with his Lite Brite today. I'm sure it was much easier for him knowing he only had 5 pegs to put in, as opposed to looking at a screen with dozens of spaces for pegs to go in.

More About the Oprah Interview - a 9 year old's thoughts

My oldest son watched the show yesterday and after watching it he told me that he was glad he saw it but that he didn't really like it. I asked him why and he said, "because it didn't seem real." I probed a little further to find out why. I wish I could remember our dialogue better, but the gist of it was because they did not talk to any autistic people!

Isn't that interesting? While there have been a few direct conversations on television with autistic people (Amanda Baggs and "Sue" from "Autism is a World"), most media attention regarding autism is given to the emotional rantings of distraught parents and medical professionals.

I found the excerpt with Andrew, the "almost 12 year old" boy on Oprah yesterday interesting. My oldest son reminds me a lot of him. Like Andrew and David, his brother, my oldest is 16 months older than his autistic brother. He is an immense help to me, and as they have gotten older, he is wonderful about trying to engage Samuel in playing. He understands that Samuel is autistic and he will always be different. While much of our family life is affected by and perhaps consumed with autism, I feel no guilt for how we are living and for the help that I ask of from my son. There are plenty of moments that he gets individual attention from me because he is homeschooled while Samuel goes to public school. He also gets to travel with his Dad for his go-kart racing and other occasional trips they take to my husband's hometown, Rochester, New York. Unlike Andrew, my son does not have such a negative view of autism. I'm sure there are times that he wishes things were different, but he does a wonderful job of accepting our life as it is and accepting his brother as he is. I liked seeing the video of Andrew trying to play with his brother. I'm sorry that he feels lonely and has a hard time that David often won't respond. In our family we have the added benefit of Samuel having a younger brother. He doesn't yet understand what autism is, and he is relentless in his attempts of getting Samuel to play with him. I think that this is invaluable experience for Samuel. My oldest and youngest boys also have the benefit of playing with each other when Samuel decides he is going to ignore them.

I don't mean to offend anyone who has made the decision to have only one or two children by saying this and I know not everyone can have the set of circumstances that I do and I know there is a certain paradox in this, but having several siblings that are both older and younger than my autistic child is a HUGE benefit for us and I think it makes living with autism easier.

Well, today is Good Friday and I need to spend my day appropriately so I better end the blogging for now. We cannot participate in the various services and masses at church because of Samuel, at least for right now. We are fortunate to have EWTN, a Catholic television station, on which we can watch Good Friday services so we will have that on for most of the day. Based on how Samuel is behaving in church, I do envision a day, several years up the road, in which we can start participating at church during Holy Week again.

Appreciating My Husband

Often overshadowed by St. Patrick's Day is the even greater feast during the month of March in the Catholic church, St. Joseph Day on March 19. St. Joseph is the patron, role model, and advocate in heaven for fathers.

In light of the occasion, I took a few minutes yesterday to think of my husband's relationship with our children. While my husband has half-siblings, he grew up as an only child in his parent's household. Because of this I think he is sometimes a bit overwhelmed having 4 children in the house as we do. I think he remembers "home" being a much quieter place than what ours has become! He seems to do best dealing with the children one-on-one, though tonight he took on all 4 while I attended a Special Education Advisory Committee Meeting for our county. He deserves a lot of credit for keeping a baby girl who thinks she is entitled to be attached to Mommy 24 hours a day and has recently discovered the joy of cookies and the ability to ask for them (that is all she says ALL DAY - "gook", rhymes with "book").

Go-kart racing has become the family hobby in the past year. So far only my husband and oldest son participate, but the plan is for this to change as the next two boys get older. It is looking as though racing will be the venue for all of us to be involved in something together. There are plans to involve Samuel this year by letting him try driving. Then next year our youngest son will start.

We don't know what to expect with Samuel. I cannot picture him following the necessary rules to participate, but he could always surprise us! Perhaps if he cannot drive then he could help with mechanical things as time goes on. I'm guessing I will eventually be the fan club and event family organizer. Maybe our baby girl will drive some day too! With any luck I'll at least get to see my oldest son in a race this year, but I don't expect the entire family to be involved for several years yet. I might be kicking and screaming when I do get involved, but I want to act according to what everyone in the family enjoys.

My husband and I bring our own strengths into the family. I sometimes complain about how we don't "work together" enough, but I am grateful for his unique personality and outlook on life. He is much better at bringing fun activity in for the boys than I am, especially as they get older. Dealing with Samuel, and two additional babies since he was diagnosed, has taken its toll on me in that regard, I'm just too tired during and at the end of the day to care about much else beyond the little world of child rearing that I live in. A short trip during Easter and a Disney World vacation are being planned and all I can think of so far is how difficult they will be! If it was up to me I'd probably just spend the next few years catching up on housework. Thank goodness my husband won't let that happen.

Successful Afternoon Out

We were back and forth from our house 3 times yesterday! I get absolutely worn out on these kinds of days; making sure I have everything I need (diapers, snacks, etc..)gathering the children up, getting them in the car, getting them out of the car and safely into wherever we are going. I have scaled back our participation in activities this winter and spring because I find just getting out to be exhausting.

Our morning consisted of getting Samuel to school and then going to our pediatrician's office (20 miles away) for the baby's 15 month check up and an ear infection follow up for my youngest son. We do have to travel a bit to get to the doctor, but it's worth it. Our pediatrician and his staff run a very efficient office and the waiting time is short. Sometimes there is almost no wait at all! This makes it very helpful for Samuel. There is no way that he could have waited as long as we used to have to at our former doctor's office. I can take Samuel to our present doctor for appointments and can take him along for other children's appointments quite easily. In the past year and a half my husband has worked close to this office as well, so sometimes he meets me there to help out.

My youngest son then had a birthday party to go to early in the afternoon. We didn't have Samuel with us when we dropped him off but I knew he would be with us when we picked him up. That can be a problem. Samuel (naturally) would want to go into the house. Once in there he would probably get into things he shouldn't and it would be very difficult to get him out. I determined ahead of time that NOONE but my youngest son would go in.

We also had about an hour to kill after we picked up Samuel from school before it was time to get his younger brother. What to do? The library was a possibility, but after all the activity I endured earlier in the day I just didn't know if I would be up for that. I decided to go to the grocery store instead. Samuel can endure short trips there because he knows that there are videos and DVDs for sale and he can look at them.

I did not have a visual schedule for our afternoon and I had not made Samuel aware earlier in the day that we wouldn't be going directly home. However, after we left the school I pulled to the side of the road and we took a few minutes to talk about what we would be doing before going home.

We got through the aisles of the grocery store without too much difficulty, except that he kept trying to "Scottish Irish Dance" (from "The Upside Down Show"). He got to look at DVDs for a few minutes and nicely accepted finishing that. Then, on the way out of the store there were 2 more unexpected DVD displays! It was quite difficult getting him to pass those by, but we were able to do so because of the promise of a trip to McDonalds for a snack. We spent the second half of our hour there. I have to admit part of the reason it was easier to get around was because my youngest son wasn't there, he can be rather ornery and feisty!

As we pulled up to the house to pick up my youngest son, Samuel really wanted to go inside, but he was able to accept "not this time." I think it helped that my oldest son voiced that to Samuel as well (impressive because my oldest son has friends at that house too and I'm sure he wanted to go in as much as Samuel did!). Even my youngest son nicely accepted that it was time to go home.

I was so happy to get home! We went through the usual evening madness of dinner and homework, and I ended up falling asleep before the boys did!

A Real Day of Rest!

For the first time in many many weeks I didn't worry about coming up with a schedule for Samuel on Sunday. My husband and oldest son were away for part of the day, so we did not go to church together in the morning like we usually do. Samuel did get a bit agitated in the morning over his videos and it took me a while to calm him down. That's not an easy thing to do when I don't have my oldest son to help out, but my youngest son was able to keep the baby company while I dealt with Samuel for 15 minutes or so. Other than that Samuel kept himself suitably entertained the rest of the day. He likes to go back and forth between playing on the computer, playing and watching Playstation, and playing with cars and trains down in the playroom.

I enjoyed not having the pressure of getting "work" together for him, which I've felt I needed to do every day for some time now!

Mom's Marathon

From the time I made my post yesterday morning I was not able to pause until about 3:00. I had the luxury of a short nap because my baby's nap coincided with my being able to take a break. Then, after about 45 minutes it was another mad dash until 10pm. Probably nothing out of the ordinary for having 4 children, I guess it's maddening in that we are out of our normal routine. We are fortunate in that we can depend on Samuel to play on his own for short periods of time without having to worry about his safety. I know some families that cannot do that, their children get into trouble or are self-injurious. I'm sure we'll face some spells where he will be up to some mischief and will keep us on our toes, but things are pretty calm with him right now.

I was able to work with Samuel two different times: the first at about 1pm (which I had hoped to do at about 10:30!). He was not very cooperative, but I waited him out a bit, used the token board with some mini-marshmallows, and we got through some Reading and a Math exercise. It took us 20 minutes. Then he got to play Playstation.

Our second "Work Time" was just before dinner, 6pm. He was much more cooperative this time and it only took us 13 minutes to work on some Social Studies, Science, and Religion. Then he got to play on the computer until it was dinner time.

Did I ever get to do anything fun with the boys yesterday? Not like I had hoped to. However, while his brothers were out playing in the snow with a neighbor, I spent some time "playing" with Samuel in the play room. We tortuously worked a farm jigsaw puzzle (he had to go jump on the mini-tramp after setting down just about every piece, which I had to show him) and then we sang "Old McDonald" He joined in quite nicely! My oldest son seemed happy that I read to him before bedtime last night. We just started a new novel, from a series about boys at a boarding school written by a priest in the late 19th century. The language is very different, but the stories are so appealling to my 9 year old!

As I was getting his baby sister to sleep last night Samuel came and found me in her room and asked "Mom, can I do more school work at home tomorrow?" I'm sure this question stems from not wanting to go to school, but I wonder if it means he is actually starting to enjoy our "Work Times"? Samuel will get his wish today, school is closed again! I just finished typing lessons for all the same subjects that we did yesterday.

Samuel just came in and said "Mommy, there's snow today. No school today!" He has the biggest smile on his face and has gone prancing out of the room!

It's shower time!

My introduction

Hello blogging world. I'm the Mother of 4 wonderful children, one of whom is autistic. He is eight years old and his name is Samuel. I have known Samuel is autistic since he was 2 years old. He is currently in second grade at a local public school and my life has been consumed the past few months with trying to straighten out some problems in the methods being used to educate him. My other children are Samuel's older brother, who is 9, his younger brother, who is 4, and his baby sister, who is one.

I have started this blog to share my family's experiences with autism, and to share my approach to life with an autistic child. Let me start by saying that I love my family just the way it is. Life isn't always easy with Samuel, and as time goes on we are limited in what we can do and how we can do it because of Samuel. However, I think my son is very fortunate to have both an older brother (a good role model and a wonderful helper for me) and a younger brother (who is mighty persistent and often forces Samuel to play with him and acknowledge him. I love Samuel's personality and I am determined that I am going to help him lead a fulfilling life. Do I know exactly what I mean by that yet? No, I do not, because I don't fully know Samuel yet. We have lots of hope for him! He is learning to communicate better all the time and I love the parts of himself that he is slowly revealing to us! In no way do I think that he needs to be "cured"! Nor have I ever gone through any kind of "grieving" process for him. Like I said, I am full of hope for him. It may be a lot of work to keep up with him and teach him, but I never ever consider him to be any more of a burden than my other children are!

Please excuse my newness to blogging, and please excuse any seemingly incomplete or unorganized posts that I have. I'm very very overwhelmed and tired right now! In fact, I should probably sign off for right now.