Autism and Summer Lockdown
Summer has officially begun now that all of my children are on school vacation. If this summer came with a wish, I'd wish for lazy days and lots of them. I am not a morning person so having an alarm-clock free start to my day is going to be great. My oldest already appreciates the end of her homeschooling lessons and has her sights set on hanging out with friends at the pool. My younger children are excited to have extra LEGO building time as well as more frequent trips to the park. Because I've got chalk dust in my veins, I'll still provide educational opportunities for my kids and have plans for some fun circle time games and books sometime between a late breakfast and a picnic lunch. We've all had a really busy year so I happily welcome a break from the intensity of the regular school year.
Keeping my typical kids active during the summer is not usually a major challenge. I pick a few summer camps, short day trips and plan lots of play dates to keep them busy. I try to balance their needs with Ronan's time consuming appointments that take no time off despite the summer season. His therapy sessions and medical appointments happen year-round so it's not unusual to find all us squished into waiting rooms or driving the long drive to his far away but necessary specialists.
My kids are used to scheduling fun their fun after Ronan's must-get-to appointments. Finding down time for them is essential for their well-being and for my sanity. I am sensitive to how Ronan's sibs manage and express themselves as their brother fills up many of my thoughts and much of my time. I'm grateful that my typical kids don't complain about this or see him as interruption to their activities. They accept that most of his behaviors are just who Ronan is and readily open their minds to adapt to his needs and sometimes erratic behavior. I wish I had that level of acceptance because I'm sure it would decrease my stress level greatly.
With what I hope is a more carefree routine ahead of us for the next two months I wonder if I can reduce some of the worry I carry all year long. I'll be honest, Ronan and his special needs fill up most of every stress I have. Vacation from school and time off from our very full schedule should lead to a more relaxed attitude but I don't know if I can actually fully relax. If I could, maybe that would free up some of the over thinking I do about Ronan. Imagine what I could do for myself with extra time! Maybe I can catch up on some projects I've put off. Maybe I can get more writing done. Maybe I have longer than the five minutes of clothes shopping I allow myself to do at the $4 sale racks at those Super Box stores. Maybe I will do nothing extra or unusual during summer vacation because Ronan's issues also no break in our regular routine--keeping him safe and healthy is a 24/7 job; it doesn't matter if it's summertime or not.
Ronan has gotten himself into a few scary situations even though I am hyper-vigilant about his safety. Despite the very secure locks and safety precautions I have in place Ronan is a very smart and abled child who is able to manipulate our locks. I'm not sure why Ronan prefers to be on the other side of the front door, but he does. He has learned to ignore the door chime alarms. He has made up his mind that sitting in Daddy's car in the driveway is much more fun than playing with every toy he owns in his bedroom. Ronan's safety is a constant worry of mine. That constant worry leaves no extra down time and no time to really relax during any season of the year. Keeping my guard up at all times is my only assurance that Ronan is exactly where he's supposed to be.
Is it progress that Ronan has figured out gizmos and gadgets? Is it a higher level of thinking that will allow him to be later mainstreamed with his typical peers? Is it a step forward to know that hide and seek is a new game of Ronan's even though the seeker (me) is ready to call 9-1-1 to ask for assistance to find a child who doesn't understand he's headed to grave danger? Or, is it a sense of adventure that typical little boys crave and act on? That would be neat if it was just typical behavior because I do know there is some typical in Ronan--I see it, I hear it and I sense it on his really good days that don't include my constant monitoring and worrying.
Whatever it is that makes Ronan try to Houdini himself out of our house, how do I compete with Ronan's very determined mind and convince him that his safety would be much greater served in our home than down the driveway and in the middle of the street? Being on high alert every moment of Ronan's life is something I've factored into my every-day thinking. The mental lockdown I have keeps Ronan safer and reminds me that as typical as Ronan can be during one good moment on one good day, he isn't ready for normal yet. I can't afford to take a complete break from watching him, and I can't let myself believe I'm on vacation from Ronan's needs during a school break. I've slowly and very carefully taught Ronan's siblings that as much as we went to let our guard down and our daily responsibilities fly out the window, we can't. We can take a mental break from some of life, and we should so that we can be even more refreshed for later, but Ronan's lack of safety understanding must always be a top priority.
On the days that Ronan's desire to leave the house is forefront in his mind, I can only hope and pray that I am not more than a step or two behind. It takes being in two places at one time with eyes on the back of my head mentality to keep all of my children safe and where they are supposed to be. With the amount of checking, double checking and triple checking I do to keep up with everything and everyone, it's no wonder I'm constantly running here, there and everywhere. I'm not surprised at the number of white hairs popping up on my head or how my body aches the longer I parent my children.
I should be the first one to sign up for a real vacation. How I'd love to take a short break from everything because I'd happily give up my daily stress. I'd love to unlock the constant worry that swims around my head. While summer vacation in our house might include less scholastic responsibility, the constant motion of all of my children as they explore and enjoy new seasonal activities gives me little rest. There is no lazy now or ever. My children and their summertime activities will surely fill up our calendar and my present thoughts. So will the head count I do several times a day--one, two, where's Ronan, three, four, five...
I'd wish for easier any day of the week. I know it's up to me to help my children, to provide the outlets they need to learn and to make sure they are safe so they can grow. I have plenty to do all of that and to do it right. I've given up parts of what I want do to for me when I started out on this journey, and I've accepted that long-ago started projects will remain unfinished now and for a bit longer. The constant monitoring I give Ronan to ensure his health and safety are project enough for me.
Cathy Jameson is Contributing Editor for Age of Autism.
Cathy Jameson is a Contributing Editor for Age of Autism.
We are so on the same wavelength right now. Summer to me is so much harder. I cannot keep up with all of it. At least not well. I find my patience are in short supply. Noah has taken to running at top speeds indiscriminately. At the park, the store, the street. No matter. Just yesterday he ran into the parking lot of his school where employees were pulling out. I was screaming hysterically (on purpose, look at the crazy lady, there's a REASON!) and 2 of his aides were coming out of the building. I grabbed him, got down on my knees and yelled, "DANGER NOAH! DANGER!" I was shaking. They looked at me and shared a glance at each other. Crazy Mrs.Goes, it looked like to me. Yup, u live this 24/7 and see how put together you appear to the outside world. Thanks for making me feel normal. Whatever that means :) xo lj
Posted by: LJ Goes | June 29, 2011 at 08:42 AM
Willie it really sounds like your daughter is going to be healthy and happy, but we stress over things more when they are small like - six because we are scared of the future.
She well understood you and she will make the change.
Normal kids pee in the pool by the way, and as for the poop well how often have we heard of e coli contamination on our food (lettuce, broccoli seed sprouts, undercooked hamburger. People need to get a grip - that is why they put chorine in pools anyway.
And it sounds like it was a busy two days for her. Even now all three of my family have to pace themselves. Their energy is in short supply - you have a big day one day and they all crash around here the next.
Willie I wrote another blog and left the to willie on the bottom, please forgive me, for about that time I was about to change it things started happening around here.
Posted by: To Willie | June 28, 2011 at 09:07 AM
VACCINES CAUSE AUTISM
It was bad I tried talking to her and asking her to repeat phrases about going to the bathroom and not going in the pool and when she did not appear to understand I simply forced the issue by raising my voice so she would understand how important it was to always be truthful and never ever pee or poop in the pool. She cried several times as she could see what a problem it was and later came to me on her own and said "Daddy I am sorry can I have a big hug?" and now everytime I think about it I cry.
She had actually been having a great weekend as she had performed in her ballet recital Saturday and done wonderfully and we were all so very proud of her and happy for her and then this happened ther next day at the end of the day when she had been doing well swimming in the dep end just with her sister with me watching closley by. We were all embarrased for her.
My skin is pretty thick and I can give as good as I get and I know that was not the first time it ever happened in that pool and nor will it be the last however we are thinking of her and the uncertainty of the future as we can never let our guard down and that is stressful.
Either you have afunctional child or you do not. We want more than for her to just get by we want her to be healthy and happy and smart and she is we just have to get rid of her autism and with the help of Almighty God we will get rid of it and everyone elses too and I truly feel that way.
We are going awayfor the fourth of july and we our considering swim undergarments for her as a precaution. She is high functioning but we do not want her to forget and ruin everyone's weekend at a resort and I do not want her to be ashamed or embarrased. I love my children and Autism has made me a harsh parent and I am ashamed of it truly I am but that is my current reality that I must overcome.
Thank you for your kind words Benedetta
VACCINES CAUSE AUTISM
Posted by: WILLIE | June 28, 2011 at 03:42 AM
I think that they feel like they are going to have a bowel movement most of the time down there anyway. I think they have constant pressure, to the point that they may ignore it, and miss their cues when they really do need to go. Suddenly there is actually a BM and they are just as surprised as everyone else. The pool may have relaxed her enough to loosen her up, but she probably thought it would result in nothing as usual, and then by the time she was actually having a bowel movement it was too late.
I don't think the medical people have anything that helps the lower colon - spastic colon, I think they call it. Plus BM cycles from loose to hard to loose. Most of the time for my son it was always hard. They try to go, strain to go, and nothing. I'd be careful that they don't learn to just sit and strain, that straining can result in hemoroids on down the road at a young age. It is best to teach them in the very beginning not to strain, if it don't come it don't come. They live with a lot of pain, I think.
My son even now that he is 25 knows were all the bathrooms are every where he goes. If I send him to Lowes he spends half of his time in the bathroom. I don't know if it is nerves or what at this point, but he has got good at reading his body function cues. He has learned.
Your daughter is only six, and you said she has been doing very well. It may not happen again because she may have learned from this experience not to take such a chance of relaxing so much the next time. She sounds very high functioning. Have you been able to talk to her about this?
Also something I never understood was the pee. Later when my son was trained and much older, we would be going down the road and he was suddenly say he needed to go and go bad. We could go from peaceful alright with the world to urgent got to go right now! I've had to stop on the side of the road many of a time. So, either he did not communicate it earlier or he didn't get the signal from his brain to his bladder untill it was urgent.
We did discuss this, that perhaps he should pay attention when he was a little need before it gets to be a big need.
Then he would pee on himself sometimes at school a very rare event but it did happen several times. The school would call me to bring fresh clothes.
When he was 15 and during a big cross country move he started peeing on himself all that summer. Not a lot, just little constant tinkles. But he was changing his pants and underwear a lot, and were he changed them smell strong of urine. By the time that school started though he had quite --- thank God. But I now know all of that was seizure activity.
Posted by: To Willie | June 27, 2011 at 05:57 AM
VACCINES CAUSE AUTISM
Our 6 year old with autism that swims well for her age and in the deep end and has never had a pool accident i.e. having a BM in the pool, just did so today about thirty minutes ago. Screwed up the public pool for everyone very disconcerting. I am not sure why she did it because in the past she would always say if she had to go to the bathroom etc. we did ask her if she needed to go to the bathroom and she said no. At the very end of out time just as we were about to get out she had the BM in her suit. She previously graduated from swim protectors long ago and we were obvioulsy shocked and brought it to her attention in the car talk to her about it in detail etc but we do not want that again any suggestions beside swim wear protectors?
Posted by: WILLIE | June 26, 2011 at 09:39 PM
Summer was always a time for me to catch my son up for all the missed stuff at school, he got lost in a crowd of other kids. (chalk in the veins - here too)
Summer: We read series of books and relaxed doing it, We worked on math, and worked more on better diet(eating from the garden/lots of salmon patties)- not much flour or sugar though I did not know it was a problem at the time only thought maybe, but I was reading Rimland, Atkins, Ketonic diet and all that at the time.
Best of all summer time was less stressful and he was always less sick. We bought an above ground pool and taught him to swim (more vit D).
We bought both the kids a well trained old mare and more vit D and improved balance.
There was a time that I thought my son would never ever be potty trained.
There was time that I thought my son would never talk.
There was a time when my son had unrecognized type seizures, and I thought perhaps there was to much brain injury. One ped even wrote in the medical records when he was 12 years old that he would probably have to be institutionlized.
There was time when the schools tried to put him in the worse of behavorial classes (I did not see it myself ever - Most times I think the schools are looking for a couple of students to fill in a quota of class size - You know they have two potential murderers and they need four more students to be with them. But anyway my son was always in special ed classes sometimes never being mainstreames in any other classes.
Now he has gone to a community college and passed all his classes for electronics, He has taken other classes he was interested in like law enforcement, psychology, writing (of all things!)
Yesterday at age 25 he took his first day trip, alone, 75 miles away, to his home town, to his best friend's wedding (another miracle), and danced with the bride !
Yes, it made the whole family nervous all day long; worried grandparents, sister, aunts and parents.
The day before he was helped by his father and I to pull "His" first troubled calf. It did not end well, but he took it like a man!
Posted by: Benedetta | June 26, 2011 at 12:42 PM
Hi Cathy same here escape artist and “ vanisher” our son is. He was worst when he was around 8-10 years and we had a big chair that one of us used to sleep in taking shifts at night time while he sort of slept ,that went on for 6 years.During the 2 -8 year old age we could erect various obstacles,combination padlocks on the doors (which he would crack in a heart beat) to slow him down and get to him before he would escape.
When he did escape he would be off .He did not know where he was going only one thing in his head,(I think) he wasn’t for coming back and he would vanish in the space of40 seconds .One night we found him after vanishing, in a neighbours very big house 2 miles away after a phone call from the house gamekeeper.Our dear son and had let himself in through the front door. The daughter in the house by herself was petrified, and had locked herself upstairs while our son jumped around downstairs. She had phoned the gamekeeper who went round with a loaded shotgun having being told by the daughter it was a burglar ... he recognised our son and phoned us,and stuck him on the trampoline while we came to collect him .Hence we think, it is always good if people know who your son is and what he does.. most of the times.
We got him a computer they were giving him lessons on this at school.Since then his escapes have been less. Not that we leave him on the computer for ever but if you want 5% less stress of "where is he" going on in your head we put him on that .
I took him to a remote place one time and just let him go .I took myself up a hill where I could see an area of around 3 miles in each direction .This was to see if during a space of time he would think of coming back in the same direction he left me.Well 3 hours of watching him fumble his way in the opposite direction from me and it was getting dark I went after him ,he would have still been walking 2 days later if I hadn`t and sorry to say not the slightest incline of coming back ..
Nightmare with a capital N..
Posted by: Angus Files | June 26, 2011 at 11:58 AM