The silent cry, can you hear us now?

The faces of Autism are our children and we love them. We work tirelessly to get what our children need. But you do not see the faces behind those Autistic children. For the most part we hide, trying to make sure it is our children that get the attention and the help they need.

No one expects an athlete to compete at his best if he does not rest and take care of his health. No one wants a doctor to preform an operation if he isn't well rested and in a healthy state of mind.  We spout things like if mama ain't happy ain't nobody happy. We say it for a reason, if mom or dad is not taking care of themselves how can they best take care of their children? What happens when taking care of your child is the very thing that causes you to neglect your health and well being? What if the care-taking of your child is so all consuming there is no rest or peace.

I am in a place now that I am able to meet my needs physically, emotionally, and spiritually. When Ike was young that was not the case. I was a mother I never thought I would be. Desperation, depression, and anger were my daily companions. But we do not talk of these things, they are ugly and uncomfortable. No one wants to know how often I lost control and screamed at my child or curled up on my bed while he watched hours of television because I couldn't be a mother one more minute. It is my weakness and my shame but also my truth. Parenting a child with Autism is hard.

I have been following closely the Kelli Stapleton case recently. If you don't know about it I invite you to look it up. You will find people willing to voice their opinions on both sides. I feel for this woman and her family who are in an impossible position. Why did no one notice she was at the end of her rope and help? Most importantly I am sitting back and watching. What is society going to do? They have been forced, for a moment, to hear the Autism caretaker's cries. Cries of frustration, helplessness, sorrow, determination and pleas. Many will look the other way and cast judgements. It is nothing new to us. But we live in hope that even a few will hear and help.

We had the same hopes and dreams for our children when they were born. We have had to let go of many of them but in the end the most important ones are the same. We want our children to be happy, to be accepted, and loved. We need help. We can't do this alone. This is our reality, the one we live with everyday.

Mistakes

I had the privelege to attend a lecture given by Temple Grandin last week. So many wonderful nuggets of life wisdom were shared. I was impressed with her ability to stand in front of a large crowd and without show of nervousness teach us profound truths she had learned in her life. I think the most comforting and profound wisdom conveyed to me personally was watching her and noticing all of the similarities she shares with my Ike. Looking at her gives me great hope for my son's future. I don't know anything more valuable than that for a parent.

While listening to a TED talk on making mistakes this morning an analogy was drawn to music. That playing a note that may not be in the song score or key that the group is playing can be seen as a mistake. The speaker challenged that it could also be seen as a missed opportunity. That the mistake did not happen when that particular note was played, but in the way the musicians responded to the note.

 They went on to play an example of both instances. Showing how when the band did not respond to the note and continued to play as usual or stopped it was awkward and the note stuck out. Then they showed what happened when the musicians welcomed the new note into their music and worked to adapt and blend with it.

Hearing the differences astounded me. The abrupt and awkward first example and then the new and interesting second example.  All I could think about were my children. My children are the notes that don't fit into the music as it is written. They are the F# in the key of C. But when trained musicians improvise and work my children into their piece it becomes something new, interesting, abnormally breath taking.

I've watched this happen. When an adult or child takes my children's abormalities and uses them as a strength it is awe inspiring to watch. It happens so rarely. Most of the time my children are the bad note in the song, even more glaring because many stop the song to point it out and ask it to be fixed. You can't fix an F#. It is what it is.

To those with F#'s that read this, find those that are willing to work a song around your child. It will be hard but the only way our children will see their real value is by surrounding them with musicians who can and will improvise.
 
There are no mistakes on the bandstand

An abnormal network of friends

Today I had one of my favorite piano students come for a lesson. His mom knocked on the door and one look at her and I knew we had a problem. She said that he was having a melt down in the car and didn't know if he would get out to come in for the lesson. I thought about telling her not to worry about it and we'd try next week but I thought about all those times when this same scenario would happen to me with Ike and realized I needed to do everything I could to make this happen. I went out and convinced a crying and upset boy out of his car and into my house. He was hitting himself and couldn't get calm. I reverted to what I used to do with Ike, the Big Squeeze. I would hold him and put pressure on his body and let him push back and it seemed to calm him. I tried it with my student and it started to work. By the end we were able to play a few piano pieces and most importantly he was able to calm down.

I was able to talk with his mother for awhile about their summer vacation. She told me of a story about an adult male that had the audacity to lecture her about her parenting while waiting for a bungee trampoline ride. My student was having trouble waiting in line and kept walking to the front. My friend would verbally call him back and he would eventually comply. This man manhandled the boy and told him he needed to listen to his mother and then proceeded to lecture my friend about how to be a better parent and how undisciplined her son was. She tried to explain to the man that her son didn't understand but he didn't care. She told me she was so mad they packed up and left to return later and even then she sent her husband because she new she would start crying if she went again.

All I could think was, this all could have been avoided if there was more awareness and compassion and less hasty judgement in this world. What is it about humanity that we are so quick to judge and then voice our opinion when we have little information or experience? After having a special needs child I would never presume to give someone else parenting advice unless asked for help. I also shy away from casting stones at another person's parenting for the shear fact that I would hope people would be as gentle with me and my haphazard parenting.

My network of friends grows with my age but it has morphed from people who share common interests to people who share common experiences.  I can look into my friend's eyes and see the exact same emotions and challenges but watch as they deal with them in their own unique way. We may be an abnormal bunch but we wouldn't have it any other way.

How is your Marriage?

I watched a new documentary today about Autism on Netflix. For me it was nothing I didn't know already. The tears came as I watched other families struggle with daily life. Something stuck out to me as I watched each family's story. The same question kept popping into my head, I wonder how their marriage is?

Marriage is hard enough with the ins and outs of compromise and patience and love. I remember such optimism for me and my husband's future. I knew who I was at the time and loved who we were together. We had goals and we had dreams. It's been 12 years since then. A short time really, but I feel that our relationship has been pulled and stretched till it doesn't remotely look as it did in the beginning and it certainly doesn't look like our hopes and dreams.

It is a new and different thing, forged in the fires of success, failures, no sleep, fights, Autism, ADHD, therapy, and the list goes on. My mind is coming to wrap itself around  who we have become. We are the parents of children with ASD. My worry is that that has become the only thing that defines us. It overshadows everything else in our life. ASD doesn't pick and choose the things it affects, it affects everything.

I watched the parents in the film and I saw such dedication to their children. But I felt myself wanting to ask them, do you still make time for each other? Is your relationship based on anything else besides the mutual desire to help your child? Is there anytime for love and defining yourself as a couple? I needed to know this because some days I am so overwhelmed with being the caretaker I forget that I am also a person, a wife, a companion.

So here is to trying to be better at being more than a mother of children with ASD. I am a wife to a man that I find very interesting. I will talk to him more about things besides our children. I will engage him in the things that brought us together in the first place, like sports and music and books.I will look for new things that we can do together to enrich our relationship. For when I sat back and thought about those couples more, I realized that the best thing we can do for our children with ASD is give them happy parents.

You've got Mail....... ANXIETY delivered.

I have always been a social creature by nature. I love interacting with people. One on one, groups, phone calls, texts, and emails. You name it I love it..... usually. It's been about 5 years since I haven't felt some anxiety when interacting with others in any capacity. My children's diagnosis has taught me to fear communication. That may sound totally opposite from what you would expect but hear me out. As Ike's and then Mike's journey with ASD/ADHD started I began getting phone calls, emails, and meetings about their behavior.

 "Mrs. Lambert we have had an incident in school......", "Mrs. Lambert we would like to set up a meeting to talk about....", "Mrs. Lambert we are afraid your son has......".  I feel like it is a million different conversations that end the same, your sons are the problem and we need you to fix it.  It would make anyone jumpy whenever the phone rings. I have developed a sixth sense for knowing its about my kids when the phone rings.

The hardest part is the fact I am usually helpless to do anything in the situation. Do they want me to sit next to  my children all day to make sure they aren't disruptive? Did it ever occur to them that my child might be reacting to the situation they have been put in? Conform, fit in that round hole. I have been kindly told by some that maybe home school is the answer. If I thought home school was going to give my children what they needed don't you think I would be already doing it?

I received that back to school email from the principal this week. All I felt was dread, even though the thought of two seconds to myself should have had me doing a happy dance. Will my kids succeed at school this year? Not if nothing has changed from last year. When you don't change the classroom situation but expect children to act differently because they are one year older, it's called  "beginning of school" optimism.

This year I will not cave in to it. This year is going to be different because they will work with me and help me create an environment that not just my children but all those near them will succeed in. It's what I tell myself every year at this time. It's my game time pep talk and it's what I do to survive.

They were a very quiet pair... seemed so normal to me

Two small children sit

silently engrossed in play

Sensory refuge 

Ode to Mr. Rodgers

I have very fond memories of watching Mr. Rogers when I was young. The Crayon Factory episode made such an impact that I excitedly showed it to my children on the computer 20 years later. I not only watched Mr. Rogers but we had a cassette tape of many of the songs he sang on the show. "I like to take my time", "Man that Manufactures" and "Beautiful day in the Neighborhood" to name a few. Little did I know when I was a child that Mr. Rogers was teaching me social skills while we were living in the land of make believe. I learned that I needed to use my words when I was frustrated instead of hitting. I learned that it was important to be kind, to be obedient to my parents, to ask questions when I didn't understand. Looking back with adult eyes the one thing that Mr. Rogers taught me that I have needed the most as a parent is "Go back to the basics."



Last week I reached my breaking point with my boys. I snapped. The fighting, whining, disrespect, defiance, I'd had enough. We came home from scouts and I sent them to their beds and went on a walk. I have been reading The Explosive Child and The Defiant Child, trying to figure out what to do with my children.  On my walk, a part from both of the books finally clicked into place for me. I was so fixed on what my children were doing or not doing I wasn't looking at my behavior. Talk about blow to the ego. Was my behavior as a parent helping to create or perpetuate the problems we were having? You probably can guess the answer, it was.


I came home from the walk with my dog calmer but more determined. I went into their rooms and started taking toys, books, video games, anything I could find that they liked. I looked each of my children in the eyes and said, "These are mine. I paid for them and you don't deserve to use them with your behavior as it is". It didn't go over well, but I stood firm. I had realized that I had enabled the bad behavior by making excuses for them. "Well they just don't know better, they have ADHD/ Autism". What I realized was by doing this I was allowing their bad behavior by not setting basic boundaries and expecting them to comply. I have been so used to dealing with their inability to do certain things that I had used my children's diagnosis es to excuse behavior that they actually could control.


So I went back to the basics with Mr. Rogers. With the song "I like to take my time" in my mind I have spent the past week deprogramming and reprogramming my children. It has been so far an overall success. I have had to put extra effort and time in this week. I have had to be mean mom and watch my children cry as they are figuring out boundaries and expectations again. I have had to admit my role in my children's behavior, which was no small pill to swallow. But as I see the small success I see the truth of it. The basics are the basics for a reason. They work.



So thank you Mr. Rogers. When you taught me the basics you also made it possible for my children to learn them as well, even though to my sorrow, your show was too slow to catch their attention when they were young.