Coping with a difference he can't explain

                It seems as quickly as I figure out my sons little quirks; they change on me just as fast. Bath time is a good example of these changes because bath time has given me ideas as to how important his desire can be to have things a certain way and how quickly it can change.

                Phillip has a very strict bath time routine. He has the same toys he has always had and no, he does not allow new ones. No matter what it may be it is not allowed to break the routine of yesterday’s bath. For a long time he would get very upset if I placed him the bath tub while the water was running and shut it off. Sometimes so upset when the flow of the water stopped we had to just call it quits. He has gotten over this but it took months for that to happen.

                He has ten toys he takes in with him and one toy must sit in the side of the tub. That toy cannot be in the water and he doesn’t play with it. Typically he wants me to lift him into the bath but lately I have simply turned my back to him and he gets in himself. He could do this all along but mom was playing into the routine a bit too much. He also has a bucket the toys go into that he gets himself and puts the toys in the bath but once he does this he waits for me to dump the few drops of water out of the bottom of the bucket into the sink before he gets in. I will tell you this must be done and if it is not it puts a kink in the entire process.

                Once he is done in the bath he used to stay in the tub and we would count the toys as we put them back in the bucket. If we stopped before ten he would search for the toys to ensure we reached the right number. Then he would get out, on his own, and I drain the bathtub. For the past few weeks he has changed his routine and now he gets out of the bathtub first, then we count the toys and put them in the bucket. He no longer seems to care about the process of draining the tub so he is letting go of something and I see that as a good thing.

                Here is the part that will give a clear view of how set his mind is on the way it is done. Today we walked into the bathroom and a washcloth was hanging on the faucet. The same washcloth that he uses for his bath, but the washcloth was in the wrong place. On a normal day the washcloth is in the bucket with his toys under the sink. He took the washcloth off of the faucet, opened the cupboard and put it in the bucket. Then he pulled the bucket out and started putting his toys in the bathtub, right along with the washcloth that was just in the bathtub.

                I see things like this and it explains the other side of meltdowns and how the smallest thing can be so important to his routine and how his mind works. The easiest way to explain why he does this and why it works for him is if you know what to expect there is very little to process. Autism is considered a processing disorder in regard to being able to process an overwhelming world around the child. If a child knows what is happening next then it has already been processed, it's easier. It’s not always so simple of course but he knows what helps him so I watch and learn from him. His mind is set to do it a certain way and every once in a while he can change it up a bit, but very small changes and those small changes stick around a long time. It becomes the next routine and I never know when it will come, it just does and I am happy for him when he is able to do it. It means he has gained just a bit of the control and comfort he needs to break away. It also means he is coping with a difference he can’t explain.

Clothes are irrelevant..and thats ok.

             There are some big differences between raising a child on the spectrum and raising children who are not. One of the biggest differences I have found is being able to let go of some of that control as a parent. Just some of it because you still have to be the parent but some little things are ok to just let go. Lately our control struggle has been clothes and Phillip prefers to be without them.

Over time I have had to pay attention to the signals he gives me and work with them. He hasn’t slept in clothes in over a year and one blanket he prefers over the other. He can be in a sound sleep and if I place the unfavored blanket over him thinking he might be cold, it wakes him. So, I don’t bother with that blanket anymore. Even if I barely cover his feet, he wakes.  He taught me what will help him and to be honest help me get as much sleep as I can. We went from waking up all night long over and over to a sound sleep, as long as I am able to push back my mommy desire to put pajamas on him or cover him while he sleeps. The good side to this is I never buy pajamas for him; the bad side is some of those pajamas are very cute and I can’t buy them.

                At home he is diaper only. He knows now when the clothes come out we are getting ready to go somewhere and I have learned to sing a silly song with each item of clothing to get them on peacefully. My family thinks this is a humorous tactic but it works and if it works with humor, even better.  He is three so when someone is over and he has taken his freedom to a new level, meaning naked, well then it has gone too far so we keep putting the diaper back on and I am always pleased when it stays on for an extended period of time.

                The other day I left Phillip with my folks so I could go run an errand he just couldn’t tag along for. My parents know all too well about the clothing protest with Phillip and thankfully they are also two of the most patient loving people alive. I felt it was best to take him to their house as the environment would keep his mind busy longer than at home. I know at home they would be dealing with a boy without his clothes for sure because he takes them off as soon as he gets in the door, but other places he has distractions for a time before this happens.

                The day went perfectly for everyone and when I returned I was glad to see Phillip was still dressed keeping himself busy but his pants kept falling down so my dad rigged his pants to stay up. The drawstring on his pants had been tied to the button on his jacket and I found this to be hilarious! Phillip didn’t know and didn’t care or at least he didn’t seem to know. I had a hard time getting the knot undone but that was even more entertaining because typically I am trying to get clothes on him, not off of him.

 Sometimes it’s ok to let go of some of that parental control and even better when you can improvise to make things work!  Most important is to pay attention to the signals and work with them. The mommy desire that eats at us to have things a certain way can actually be irrelevant when it comes to what we need to. I want him to wear clothes and put on some cute Toy Story pajamas but he needs to be without, so we compromise and improvise. It may seem when my three year old is streaking by at home for the 25^th time today that I have not practiced my parental control but if we slept sound last night and he agreed to wear clothes out of the house with a little help from a silly song, we have success!

Life with autism: In their own words

                I really liked this short video and the little man at the end made me laugh. Logic is key! That doesn't mean someone with autism can't be funny or understand different social cues. It means they might just need a little help with it...you could say in the same way some of us need a little help with logic.

Reach out to autistic adults.

               Yesterday was a day a cold hard reality slapped me right across the face. It took most of the day to accept this reality and know that it is more powerful than anything I can change in the blink of an eye. Baby steps and with the help of so many people this reality could change but when I laid down last night to sleep I had to tell myself, this is the way it is going to be and I have to find a way to understand that.

                There is a stigma on autism that many people believe to be true and maybe in some ways it is but it is certainly not a fair one. Yesterday when I said the word autism the conversation when to directly to discipline and how to handle my sons behavior. The problem was I hadn’t stated my son had issues with his behavior. I know many people on that statement alone would say…but he has autism.

                Phillip and so many other kids are not burdens in the world but the world becomes there burden. I don’t look at the challenges autism brings as discipline problems because his nature is good. He never tries to hurt anyone and he has a genuine interest in everything that actually keeps him too busy to attempt to be a naughty boy. The only time Phillip is hard to manage is when the world comes crashing down on him and this no fault of his own. Knowing this it makes it hard to know so many people feel autism and bad behavior go hand in hand. When I am carrying him out of a busy environment and he is upset, this is because his mind isn’t making the change as fast as it needs to. Then he gets a wave of feelings and his mind also has to get a hold of that. Both of these things at the same time cause a challenge. He has to learn to cope with that collision and I believe he will with patience and time. He is already learning his own mind and using some skills to calm himself when he feels that collision coming but he is three and he has a long way to go.

                Yesterday I also came to another reality but not such a hard one to accept. I think people want to understand autism and do listen but the complexity of how each child operates is very difficult to grasp. Some people truly have no understanding and it is much easier to view a child as naughty then it is to understand the process of an autistic mind. I can blog and blab my mouth until the end of time and there will still be an inability to grasp the difference.  They hear what the media reports and they know padded rooms and restraints are used. Immediately the view of someone with autism is distorted to think these tactics are necessary to control such out of control children. Then again that’s a hard thing to argue to because even some parents support those tactics, because they haven’t found another way…yet.  

                Maybe in time this stigma will not be so strong when it comes to our kids and maybe in time people will discover new tactics to help. Adults with autism play a key role in the progress and listening to how they would have liked their own struggles handled by others. If people will listen to celebrities like Jenny McCarthy, who gave her child bleach enemas, why are we not utilizing the logic of adults who truly do understand?

Dear Society...

Dear Society,

                I am a mom and I have three kids. My kids are twelve, fourteen, and three. My older children were toddlers together and for the most part they were able to live up to our social standards but I don’t encourage it and I will say in the last ten years our social expectations have risen quite a bit. My older children could speak full sentences very young and communication was never a problem. They could sit still when they needed to and understood the world around them better than many adults I have met in this life. I worked hard with them to make sure they were prepared for school and ahead of the expectation. They are well behaved and work hard in school. They do as I ask 95% of the time and are growing into amazing additions to our crazy adult world.

                I have taken the same approach with my youngest but he doesn’t speak sentences. He doesn’t tolerate social order such as standing in line yet and he doesn’t pick up on those expectations we have put in place to fit in. My older children can adjust when it is necessary but alas the youngest is not able to grasp this concept. He is autistic as much as he has to learn, society still has much to learn about autism.

                You see I have worked to teach him the alphabet, numbers, colors and to behave in order to appease the people around us but he has taught me this is not so easy. Repetition is what he needs and so repetitive one person nearly can’t keep up. Technology is nice because it has a battery that doesn’t run out unlike mom. The more he sees it and hears it the more it is pulled out. An example of this would be the alphabet. Over and over I sang it, showed it to him, and forced badly made DVD’s on him to learn the sounds. There was never a sign he was retaining it until one day he showed me. He knew the sounds and he could recognize the letters. He made it all the way to letter S and he fought like hell to get it all out.

                Next time you see a child blasting by you in a grocery store or whatever public place you may be, and you see a mom blasting by you right behind him with extreme patience for her child’s actions keep in mind this repetition process. Today she got him in the store peacefully for the first time. Today she may have gotten an extra half hour out of him to get what she needed. Today she also ran out of frozen waffles and it’s the only thing he will eat for breakfast. These outings, she prays for just a few more minutes of success because the repetition of trying is what makes that happen.

                I will tell you with my son’s autism, and I can only speak for him, he sees, hears, and soaks in everything around him. He may not say it or make it known he is doing it but he is. This includes the actions of society towards him. He knows he being stared at and he sees people whisper. He notices when you roll your eyes and give his mom an odd look that doesn’t appear to be a friendly one. The nasty comments made to some parents are heard and they soak in. The repetition of society is teaching our children the social expectations they are required to learn. How society reacts to a difference makes a difference to a child and a family.

                A child with autism may not be doing what everyone around them expects of them but they are fighting like hell to understand what that means. The actions of others play a bigger role in that process than people think because on the outside looking in it may seem autism isn’t paying attention.  I ask one thing and one thing only…please practice understand and repeat it as often as you can.

                That simple act almost everyone is capable of and not only does it help just a bit to create 1 in 88 amazing additions to our crazy adult world, but a little self improvement never hurt.

Sincerely,

An autism mommy, who has run out of waffles.

The hurricane of autism video

Sometimes he seems to just break through...like he knew how all along.

                 Last week I wrote a blog about routine and the isolation of an autism parent. On a side note of that blog, we all still want the invite! We just want others to understand when we have to say no. I noticed a drop in my own life of invites and wondered if that was the cause. It could just be my personality but I going with the blog because that would mean someone is actually reading it. LOL all in good humor and on to the days babble.

                 Phillip talks a whole lot of gibberish. Always has really and the words just have taken a very long time to come together. Rarely does he use two words at once, in fact never, and even though I talk to him like we are having a conversation, it’s really one sided. Many of the sounds he makes are swooshing sounds or his face appears to be telling us something very clear but his words just don’t make any sense.

                When a moment comes that is clear and that verbal connection is made it is the greatest feeling in the world and you cling to that moment with all your strength, just in case the next one is far off or it was a fluke.  Last night Phillip and I were going through his bedtime routine and saying goodnight to everything we could see while walking up to the bedroom. He just grins and goes along with it but honestly it’s me saying goodnight to everything and he is just entertained by it. We crawled into bed and all of sudden he looked at my face, smiled and said…”Happy”. Yes I made sure to ask him again to say it just to make sure that was what just happened and he did repeat it with a smile. It’s a moment that is nearly impossible to put into words when you rarely hear any words from your child and a word that is based on feeling, a good feeling, is amazing.

                This morning I was greeted with Phillip once again making his swooshing noises and giggling. He will take his hands and move them around with the sound and I can say I have no idea where he got this or why he does it. I can tell you he attempts to say Mashugina which is Yiddish for troublemaker and sort of family joke around here. It doesn’t come out clear but a bit funny that difficult word is one he attempts and has that SH sound to it he likes to try.  While he making his swooshing sounds I was trying to guess what he was saying. I asked him if he was trying to say Mashugina and he shook his head no repeating the sounds. Then I said to him…”is it the motion of the ocean?” That is when he completely stopped, looked at me and said…”huh?” with his little nose crinkled up on one side.

                In an attempt to desperately figure out what he was doing and no I still have no idea there was another moment of communication and the fact he responded the way he did was a complete success in a mind boggling and somewhat frustrating moment. Moments like that open the door to knowing more will come. Maybe not again today or even a month from now but it will come and when it happens sometimes it seems as though he knew how all along it comes out so easily. Like he broke through whatever it was that was holding it back.