Today, I have another guest~Sarah~who will be sharing her family’s experience with Autism. Because I gave her a hard time that her post was one word short of the cut-off (1998 words), I won’t say anything further and let her tell you about her amazing experience with three Autistic boys.
Thank you, Rose, for asking me to write something about my life with my boys during Autism Awareness Month. As some of you may know from my comments on Rose’s blog I am the blessed mother of four wonderful boys, three of whom have been diagnosed with autism. My oldest boys, Matthew and Jonathan, are eleven and a half year old, identical twins who were diagnosed with autism at the age of three while I was pregnant with their now eight year old brother, Luke, who does not have autism, but does have a number of health issues including severe asthma, severe allergies and he is anaphylactic to all nuts. My youngest son, Seth, is three and a half and was just diagnosed with autism last September but had severe developmental delays before his diagnosis. He did not walk until a month before his second birthday. Life with my boys is never dull and has certainly had its share of painful, tearful and almost always stressful moments, but our journey with autism has also been amazingly blessed and full of daily laughter. So I thought I would share with you some of the blessings of autism and some of the amazing things about my boys.
First I should tell you that the twins are considered High Functioning. They are verbal and can sometimes have a little conversation with you. They are both highly intelligent but very slow in doing things. I have had people ask me if they perhaps have Aspergers instead of Autism and the answer is “no.” and the reason for this is the fact that , as Heather pointed out last week, people with aspergers can have “normal” conversations with people as long as it is a topic of interest to them. With autism there is hardly any social interaction at all. Unless the twins need something they will not initiate a conversation with anyone and even then they will hardly look at you when speaking to you. The twins also have a lot of odd behaviors like constantly humming or making noise, moving their hands or arms in repetitive ways and just very awkward movements. This makes for some very interesting outings of which I have numerous stories I could share but I’ll save that for another time.
From the time the twins started talking in sentences I noticed that their words were all things they had heard from television and videos. At the age of two and half they both could repeat entire episodes of Dora the Explorer and Blue’s Clues complete with inflection and sound effects. I cannot tell you how many mornings I was woken up, with the sun, to the sound of both the boys saying certain episodes in their entirety. It was really quite amazing. My son, Jonathan, at that age also knew all his shapes including trapezoid, octagon, etc. colors, numbers and letters. In fact if numbers were out of sequence he would go into a full blown meltdown. He could spend an hour looking at the face of a clock if it had numbers on it. Matthew was the quieter of the two and while he knew most of this stuff as well he didn’t go around saying it all day and fixating on it. Matthew liked anything with wheels and spent his time lining up cars and Thomas trains and always in the same order. You better watch out if you messed up that order.
At the age of four Jonathan stood at our refrigerator and spelled the word “adventure” using the letter magnets. He knew this from a Sesame Street video we had. He could also play songs on our xylophone just by sitting down and trying out the notes. He could memorize a song heard on the radio after hearing it one time and when he would sing it back he would repeat a part over and over again just to get the note right. Last year in fourth grade he started playing the viola in the school orchestra and is still playing this year in fifth grade. He refuses to practice at home, but when he is tested at school and when they have their concerts he has all his music memorized. He doesn’t have the best form but he loves to play. Jonathan also love to draw and he especially loves to draw using the Paint program on the computer. He mostly draws video game characters. He will pull up a youtube video of someone drawing a character set to music and he will open up the Paint window next to it and draw along with the video. One day two years ago I saw him with his favorite, younger childhood, book “Chicka Chicka Boom Boom” on his lap sitting at the computer. He was drawing the pictures from the book on the Paint program and had opened up the PowerPoint program and figured out how to paste the picture into Powerpoint and was recreating the whole book in a PowerPoint presentation. I still don’t know where he learned to do that. He simply amazes me on a daily basis.
Matthew, is not as showy with the stuff he does. I like to say he is more laid back than Jonathan but really I think it’s just laziness. He loves to play video games and he is very, very good at it. I love that his younger brother, Luke, will ask him to get past levels for him. Matthew’s favorite things to read are game guides and he loves to go on youtube and watch videos of other people playing the games. He is just as smart as Jonathan is but he really hates doing the work. He is one of those types of people that once he has shown you he can do something he doesn’t think he needs to keep doing it. As his math gets harder and the need for showing your work becomes greater the greater the challenge of getting him to do the work has become. He has the answer, why does he need to show how he got it? Matthew can also be quite funny with the things he does and says. Just thinking about him brings a smile to my face.
Both the twins are generally very happy boys and one of the greatest blessings of them having autism has been the fact that they have never acted like kids their age. They didn’t go through the Terrible Twos, they rarely talk back. When I am around other kids their age it sometimes makes me happy that they don’t act like a “normal” eleven year old and I have felt that way about most ages. They aren’t embarrassed by me and they still love to sit next to me and they love to have their arms scratched or their backs rubbed. Of course, they are still very dependent on me for a lot of daily things that most eleven year olds aren’t but you have to weigh the good with the bad. They also live very much in the present, which is something I think a lot of us could learn to do more of. They don’t care about what happened in the past and only in the last couple of years have they started thinking about future things or occasionally worrying about the fire drill that is supposed to happen at school the next day. Everyone is a friend to them, which again, can be good or bad, but mostly good. They do get irritated with their younger brothers sometimes but that makes me happy, most of the time, because that is a completely normal thing for brothers.
Seth, is still mostly non-verbal. He repeats a lot of what we say to him and we call him our “Little Parrot”. Where the twins repeated phrases from TV, Seth just repeats the things we say to him right after we say it. I walk around with an echoing shadow most days. Seth is one of the sweetest little guys you will ever meet and he has definitely been my happiest and easiest boy of the bunch. He is such a ray of light in our family. One of my favorite things about Seth is that whenever he sees me, not matter if I have been out of his sight for two minutes or most of the day, he greets me like he hasn’t seen me in years. He gets so excited and jumps around and smiles so big and it just melts my heart. One of the amazing things about Seth is that, although he doesn’t do any spontaneous talking, he does spontaneously burst into song. Like his brother, Jonathan, it only takes one or two times of hearing a song for him to memorize it. He sings anything from “Twinkle, Twinkle” to the songs he hears on the radio. He doesn’t sing too clearly and it’s sometimes hard to figure out what it is he is singing but once I figure it out and start singing along he gets so excited and we can sing the same song for an hour or until I get sick of it. He and I have so much fun together.
As for Luke, my “typical” child there really isn’t anything typical about him. He has actually been the hardest of the four boys for me to parent and it pretty much started from birth. I don’t know if it was because he is not autistic but he was my hardest baby (yes even more so than preemie twins). He didn’t sleep through the night until well after a year old and he was very demanding toddler. He started crawling at 6 months and walked at 9 months. He grew up way too fast in my book. The only thing that took him longer to do was talk, but once he started around 20 months he hardly ever stopped. He could pretty much always tell his older brothers apart and when they were younger he knew what worked to calm them down and would try to help them. Now he knows what gets them upset and he likes to bug them. He was thrilled to become and older brother and three years later he still loves his little brother to smothering proportions. Seth is starting to fight back to some of the smothering, though. One of the best things about Luke is his love for his family and of God. He attends a public school but whenever they are asked to write about things they are thankful for and what they like best about something he always includes God in his writings and so far no one has said anything bad about it. He also almost always writes something about his brothers, mainly Seth. He is definitely in a unique situation and it isn’t easy for him. I try to explain to people how he is basically the younger brother with the older brother role. In a lot of ways he is more mature than the twins and I am sure as they get older this will only become more apparent. My hope for him is that he doesn’t grow up to resent the role that life has given him.
If you are still reading this, thank you. I hope I haven’t bored everyone. I wasn’t really sure what to write about but I knew I wanted to share some of the good things about autism. My life has not been an easy one but I know there are so many other out there with worse situations than mine. I am so glad that my boys are happy and for the most part healthy and I try to thank God every day for all the blessings these four boys bring to my life on a daily basis. Thank you again for reading my story and thank you again to Rose for letting me share it.
No thanks necessary, thank you for sharing!