Thursday, October 24, 2013

My Ears Are Tired

So one thing I have learned about being a mother is how special a quiet moment is.  I think back to times when we were vacationing before kids and I could hear the ocean outside when we first woke up.  I then was able to go downstairs and have a quiet breakfast with a beautiful view at the resort restaurant.  I kind of want to get in a time machine and go back and tell my ignorant self to enjoy that moment to the fullest and take it all in.  I want to tell myself to accomplish everything you possibly can before you have kids, because the constant noise afterwards will turn your brain to mush!
Sometimes I think it's just me, but then talking to my sister the other day, I know I am not alone.  While she might not have to listen to a little boy screaming 30% of everyday, her daughter is going through a stage in which everything she says must be acknowledged verbally and acknowledged in the way she prefers, and she corrects my sister over and over again.
Lately the noises in our house have given me a new level of respect for the quiet.  And no it is not (or rarely is it) my sweet little newborn baby, she usually just cries when she is hungry.  I feel like our oldest is constantly talking and questioning, sometimes really wanting to know the answers and sometimes just talking to hear his own voice.   Today on the way home from MMO he asked "Why do the Mountain Heads (Mount Rushmore) not have arms or legs, why mom, why, why, did you hear me, why?"
Our other son who was recently diagnosed with autism just screams, whiney raspy screams, and I never know what will bring it on or what will make it stop.  The other day, our hairdresser was telling me about another child with autism who is much older than mine who is "still very naughty" and who tried to punch her the last time she cut his hair.  This comment struck a cord with me.  Our hairdresser is wonderfully understanding and does an absolutely fabulous job when our son is screaming and bucking while we try to cut his hair.  But her comment reiterated to me the misperceptions people have regarding kids on the spectrum.  It's the same misperception that causes my mom friends to ask me why I do not use time out or spankings to get through to my son that he can't chuck a toy across the room when it makes a sound he does not like.  Disciplining a child with autism is probably one of the biggest challenges we are facing and the world around us does not understand because they are not educated on how children with autism think.  Most children on the spectrum have very little impulse control and while they can be very bright they do not understand appropriate social behavior and seem to understand consequences even less.  They are generally not being "naughty" instead they are so overwhelmed by their senses that a haircut or even a trip to a store with bright lights is literally painful to them and they are simply reacting to that pain.  We have tried holding him in the corner for ten seconds when he is aggressive towards me or his siblings, but we can tell he does not make the connection and does not even understand he is being punished.  While he does understand the word "no" it throws him into a frenzy that you are challenging his world, it does not teach him the behavior he just did is wrong and wrong every other time too.  We have a small army of therapists and teachers trying to better equip us to help him make better decisions, but like every other challenge with him, getting through and being consistent is a long process.
Now this is not a "whoa is me, life is so hard" post.  But simply making you aware.  Until you have experienced a meltdown (much different than a tantrum, he is not doing it for my attention) you have no idea how scary they can be.  I fear for his safety and my own when trying to control a meltdown, but it's like he is short circuiting and anything I say or do just makes it worse.  He cannot hear me and process what I am saying in that moment, the noise I am making is just making him more upset.
He had a great first day of preschool yesterday, but melted down on the way home from overstimulation.  He asked me to take his coat off, then screamed when I took it off, and then cried when I tried to put it back on.  He kept asking for his shoes off, but then kept yelling he needed them back on.  I actually took audio (linked below) of a couple minutes of the way home to share with his behavior therapist and maybe to show my husband what I listen to all day long.  I have attached this audio simply to illustrate the desperation and frustration in his voice.  This was caused by me taking his coat and shoes off when he asked, which makes no sense to me as to why it triggered this two hour long screaming meltdown.  Once again, I do not want you to feel sorry for me, but I hope this will raise awareness as to what kids on the spectrum are facing.  I feel so bad that I can't always understand what it is he really wants because he is telling me the opposite or maybe doesn't even know what he wants.  It hurts my feelings that if people see him melting down at an event or in a public place that they think he is being a little brat and that I am a bad parent because I can't control him.
The noise kills me, but I know it's even harder for him and I know he does not want to be so upset by every little thing.  I know he wants to sleep through the night and I know he wants to be able to participate in outings without making a scene.  It hurts me that he can't always accomplish that.
With all of the noise this disorder has thrown into our lives, it is sometimes hard to think about or acknowledge some of our huge successes!  We went on a trip this weekend and had to be in the car for a long time and stay at a hotel.  Six months ago this would have been nearly impossible.  We had to go into three new buildings this week for appointments and his new school and although hesitant, walking through the door did not trigger a fight or flight response like it used to.  While sleep is still a battle and he is up every night, he is going back to sleep so much more quickly and that is a miracle.
Now that both boys are in school in the mornings I am getting to enjoy some quiet a little more and my hope is it will make me that much more patient during the noise.

Wednesday, October 2, 2013

The "A" Word

I sat here for awhile trying to find the words to say to begin this post.  Sometimes it's easier to stay quiet  and always wear a smile, but sometimes you have to share your struggles.  Why is it important to share our struggles?  I guess in some ways I feel like it could help somebody else know that they are not alone.  Some of my reasons for sharing are selfish, though.  If I don't share I might just explode.

Our son was recently diagnosed with Autism, and although in the back of my head I have known for years, I think the actual diagnosis has allowed for the emotional piece of our reality to catch up with me.    Up until this point, for me, it has all been very matter of fact.  There is a delay, there is a wiring issue, there is an age deficit and we have to do A, B, and C to make this right.

And we are still doing A, B, and C and probably D, E, etc, too.  With this diagnosis we will be doing even MORE interventions and therapies.  We have already seen such progress and I am amazed at what early intervention can do, but I see him struggle and I wish every little thing was not so hard or a such a huge event.  It hurts me, that taking my other son to preschool in the morning causes a panic and a screaming fit the whole way there, the whole way back and usually for about a half hour when we get home.  It hurts me that when other people are planning Halloween parties and trick or treating, I am assuming either of those will result in overload and send him into a tailspin.

These assumptions have me torn.  I so want him to experience new things, because when he likes something he REALLY likes something.  But then I am terrified it will result in a meltdown or a kicking and screaming match that I can hardly control, so I will many times avoid a new experience all together.  I am not sure if that is to his benefit or his detriment, but sometimes I don't feel like I even have a choice.

Today was the first day I cried just for him, with no event spurring it on.  I have cried before in the middle of the night when nothing is working to get him to sleep.  I cried when the fair terrified him and he found no joy in it at all.  I have cried out of frustration when for the life of me I cannot figure out what he wants.  But today, I heard this song about a girl with autism, and I cried for him and the challenges I know he has ahead of him.  He has the coolest personality and his excitement for life amazes me, and I would not want that to change.  It is a part of him and I am so in love with every single part of him.  It really is a beautiful blessing and a beautiful curse.

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...