Beyonce is Not Naughty But I Am

Well, I have finally dropped the children off at school this morning and I couldn't be happier for some quiet around here! My five year-old son and I were the unprepared victims of the 9 year-old's Autism Rant. If you've never witnessed an Autism Rant, then be glad! When Hannah launches into one of these passionate long-winded speeches of social injustice, you could be in for an Academy worthy performance. These rants are loud, repetitive, filled with paranoid and delusional beliefs that the world is against her, and cannot be stopped. I have learned that any attempts to stop an Autism Rant are futile. At least in our household, it is best to provide no comments, point out no illogical beliefs or falsehoods, or even offer up an Amen. In fact, trying to intervene in any way, especially with threats of time-out, grounding, or spanking, only fuel the righteous indignation, and could possible turn an Autism Rant into an Autism Rage (very violent, someone gets hurt, not a pretty scene).

So, we've all learned to keep our mouths shut as best as possible, while Hannah stomps around the house like it's her pulpit. She really doesn't mind if you're actually listening or not. The Rant seems to be more for her own benefit, stemming from her intense need to put into words the injustices she has suffered, which this morning happened to be the fact that it was too cold for a skirt. This particular Rant on this morning was actually pretty passionate as it ventured off into the area of who is naughty and who should be on the naughty list. Apparently, I am very naughty and will be getting no presents this year. Bummer. I also learned from this impassioned soliloquy that there are leagues of naughty people at her school and in this family. Furthermore, in true Southern Baptist fashion, Hannah preached to us that you should NEVER put yourself on the naughty list, because that is rude!

Imagine my great relief when, after a 45 minute sermon about bad mommies, naughty lists, and the proper use of "temper fits," I finally have both children in the car and we're on the way to school. Popping two ear buds on her and some Beyonce seemed to soothe her anger somewhat. Beyonce always works for me too. Once Hannah had calmed down some, I thought this might be a good time to revisit some of the disturbing statements she had made during her sermon about the nature of Christmas. "Hannah, it's very important that we remember what Christmas is all about. Christmas is when we celebrate Jesus's birthday. I am so glad that Jesus was born, so now He comes to live in my heart and I never have to be afraid of dying. I'm going to live forever in heaven with Him, the God who made me." There is silence from her in the backseat, and I'm thinking she is turning this over in her mind. Perhaps these words are sinking in. "Having Jesus in my heart and the promise of living with Him forever is the greatest gift I could ever get. Don't ya think?"

She maintains her flat expression and replies to me with a tone that says she is not impressed, "Mom, that is not a good gift." She pops her ear buds back in and turns up All the Single Ladies. Okay, so I survived another Autism Rant, and it never escalated farther. I'll just be grateful for that and let God do the rest of the work on her!

Photo above found at:
http://jmarcdodsonjr.deviantart.com/art/Christmas-card-Santa-List-79211111

Holland Schmolland

In the vein of celebrating Good-Enough Moms, I'd like to re-print the wonderful article "Holland Schmolland" by Laura Kreuger Crawford, a must-read for all parents of special needs children:

Holland Schmolland

If you have a special needs child, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this:

Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.

You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.

You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, "This isn't exactly what I had planned, but it's not so bad. It's just different."
Having a child with special needs is supposed to be like this -- not any worse than having a typical child -- just different.

When I read this my son was almost 3, completely non-verbal and was hitting me over 100 times a day. While I appreciated the intention of the story, I couldn't help but think, "Are they kidding? We're not in some peaceful country dotted with windmills. We are in a country under siege -- dodging bombs, boarding overloaded helicopters, bribing officials -- all the while thinking, "What happened to our beautiful life?"

That was five years ago.

My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle-torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we've created . . . well . . . our own country, with its own unique traditions and customs.

It's not a war zone, but it's still not Holland. Let's call it Schmolland. In Schmolland, it's perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end-to-end. You can show affection by giving a "pointy chin." A "pointy chin" is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person's shoulder. For the person giving the "pointy chin" this feels really good, for the receiver, not so much -- but you get used to it.

For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say, "Oh, Pongo." When mad or anxious, you might shout, "Snow can't stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our feature presentation" says it all.

In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00 a.m. are all traditional Schmutch pastimes.

The hard part of living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren't always successful. It's perfectly understandable that an 8 year-old from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year-old out of the store kicking and screaming, all the customers looking on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people.

Where we live it is not surprising when an 8 year-old boy reaches for the fleshy part of a woman's upper torso and says, "Do we touch boodoo?" We simply say, "No, we do not touch boodoo," and go on about our business. It's a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings.

And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland, who insist that the pants must come off no matter where they are and regardless of whether another pair of pants is present.

Other families who have special needs children are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking to a person from Norway (or in our case, someone from Schmenmark talking to someone from Schmorway.), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. "My child eats paper. Yesterday he ate a whole video box." "My daughter only eats four foods, all of them white." "We finally had to lock up the VCR because my child was obsessed with the rewind button." "My son wants to blow on everyone."

There is one thing we all agree on. We are a growing population. Ten years ago, 1 in 10,000 children had autism. Today the rate is approximately 1 in 150. Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic predisposition has collided with too many environmental insults -- toxins, chemicals, antibiotics, vaccines -- to create immunological chaos in the nervous system of developing children. One medical journalist speculated these children are the proverbial "canary in the coal mine", here to alert us to the growing dangers in our environment.

While this is certainly not a view shared by all in the autism community, it feels true to me.

I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what "could be" to "what is." I look around this country my family has created, with all its unique customs, and it feels like home. For us, any time spent "nation building" is time well spent.

Mommy Guilt

If you are a mother, you are likely familiar with the unique-to-us feeling of Mommy Guilt. I believe women in our Western culture are prone to guilt already, then the responsibilities of Mommyhood come along and pack on more pressure. There is an intense push in our culture for mothers to be perfect in all we do. We must work 40+ hours per week on our jobs, giving 100% there or risk being told, "you're not being a team player." Then we go home exhausted and have our precious babies excited to see us and be with us, yet they get the day's leftovers. We put on the smiles, forge ahead through the fatigue, and clock in for our second job of Mom.

Because I have never parented a "typically developing" child, I cannot really know if my Mommy Guilt is more intense than other mothers. I do, however, spend lots of time with other mothers of special needs children and share specific guilt behaviors with them. As mothers of special needs children, we are prone to stay up way too late researching, spend more time than is necessary calling and visiting doctors, worry excessively about our children's futures, and feel intense guilt at the end of every night when our children still have said disorder. There's always the nagging feeling at the end of the day of did I do enough today for my child? Because if I didn't do enough, I am convinced my child will end up with a miserable life and it will be my fault. We will take out a second mortgage on our home to pay for specialists, schedule round-the-clock therapists and doctors, buy every supplement, try whatever medications the doctor recommends... we will do anything! If we don't do EVERY POSSIBLE THING to "cure" our children, then we are being a BAD mom. I just have one question-- Who the hell sold us this load of garbage?

I'm learning to be a good-enough Mom. My children consistently receive from me my support, love, nurturing, attention, guidance, and discipline. Because of this, I can rest in knowing there is room for mistakes. I will make mistakes as a mother, sometimes being too harsh when I should have shown mercy. I may be too lenient when really my child needed a stern consequence. I mess up and they grow, no, they THRIVE anyway, because they get enough. Having a mother who carries a sense of peace and confidence is just as valuable to a child as a mother who works tirelessly... maybe even more so. Children are tough and resilient. They can survive us despite our parental mistakes. If you don't believe me, just look at yourself. You survived your Mom, didn't you?

Photo above found at:
http://theusedafithrone.deviantart.com/art/The-Virgin-30321810

Do You Believe in Magic?

There are people who carry way more than they should in this world. They carry the burdens of their children, their spouses, their bosses, foreign countries, alien life forms, and angels in heavenly places. There are some who even carry the burdens of God, and just how arrogant is that, if I might ask? And, yes, I can ask, as I will admit I was once one of those people. I still have moments when I am drawn into the black hole vacuum of some needy person who is carrying too much weight and needs a partner to shoulder it, a hero to come from the heavens and take away their pain. Somehow these types of people can convince us that we are capable of taking away all their pain, and it's just so flattering to believe that. I soon find myself thinking, "Well, if he/she thinks I can solve all these problems, then maybe I can! I can and I will!" I haven't fallen into that trap in awhile, until yesterday.

I have been counseling children and families for almost 10 years, and there is a subtype of parents I encounter-- the desperate parents. These parents are having great difficulty accepting that they have a child with any type of disability or illness. Understandably, the pain of this type of acceptance is very scary and crushing. I drift in and out of acceptance regarding my own children's disabilities, but I accept it or I go crazy. That's the only two options unfortunately. Nonetheless, there are parents who hold onto hope that someday some magical person will come along with magic wand in hand, tap the head of their child and, all ADHD will disappear. Autism will shrink to nothing or severe mental illness will turn to mist and vanish. This magical person must only appear and be willing to impart her divine wisdom and allow their child to sit in her most holy presence, and all will be well.

I am getting better at spotting these types of parents, because I am prone to buying into their grandiose plans for me and their child. One of the first telltale signs is that many of these parents actually say something like this,"We have been to so many doctors and I am just exhausted with this process. Come work your magic!" I usually try to burst that bubble right from the start with, "Well, I hate to tell you this but you're going to learn it about me eventually... I'm human, no magic, sorry." Usually they don't believe me the first few times and continue to try to force magic from me. When the magic persists on not "working," then I begin seeing anger. It often sounds like this, "What have you been doing with my child all this time? All I ever see you do is playing with them. How is that going to help them!? Look, I really need help here! This is not what I thought it was going to be. I need you to talk to her teacher, and could you please tell her case manager that I need those housing forms? I'm not even sure I like this doctor anymore, are you going to be talking to him soon?" Essentially, this parent just took the enormous burden of caring for a sick or special needs child, held it out to me and asked, "Are you going to take this crap off my shoulders or not?"

Be forewarned, if you take the bait (and I have), this is what will play out. You, the therapist (or friend, spouse, etc), will take over the role of shouldering this burden. You will begin making the phone calls, researching the internet, buying the books, emailing the doctor, calling meetings at school, and lecturing the child to get with the program. Therapy sessions turn into what Mom or Dad wants you working on rather than what the child brings to the table for the day. Child clients become defensive and shut down, whether passively or aggressively. Therapists begin to burn out, get angry with the child for not cooperating with the plan! Basically, I have taken the anger and denial from the parents and made it mine. In the meantime, you are not likely seeing much progress with the child with this type of approach. Thus, parents are getting angrier and applying even more pressure. Therapist starts working even harder, gets angrier. Less progress, parents apply more pressure, therapist wears out.

Oh,well... mistake spotted. Time for me to back up and go back to plain old humanity. It was kind of fun for awhile believing I had superhero powers. I almost thought I cured one this time, but no. I've seen good, healthy, slow and steady progress with a child. One more case of the humdrum, slow and laborious work, eating your therapeutic fruits and vegetables, and being only a small part of someone's lifetime of growth. That's just how we humans heal. I guess that's just how we therapists learn too. Drats.

Photo above found at: http://mehmeturgut.deviantart.com/art/pixie-s-magic-36077755

If It Weren't for Autism...

Although I hate having Autism as part of my life and affecting my children's lives, I'm beginning to realize that Autism is teaching me some essential lessons about parenting.

If it weren't for Autism...

1. I could have been one of those Moms who tells her kids to "shut up"
2. I might have gained my own self-worth through my children's successes
3. I might have taken it for granted to hear my children read
4. I would have certainly been a control freak parent who HAS to have a clean house and perfect kids on order to feel OK
5. I would have my kids signed up for too many activities and have the entire family stressed
6. my husband and I might have little to talk about
7. I would not have been able to find this kind of joy in my chilren's words
8. I might have overlooked the invaluable gift that only other children can give to my kids
9. I would have never experienced the completely unselfish and precious gifts some teachers and caregivers have offered
10. I might have gotten lazy about teaching the basics of making friends, coping with anxieties, and using your words to have your needs met

Because of Autism...

1. I will have the immense joy of watching my children accomplish the nearly impossible task of graduation and moving away from home OR I will have the joy of getting to live with them always... either way it'll be joy
2. I have learned to relax and let my children have fun
3. I have learned to play
4. I experience GRATITUDE every day for smiles, eye contact, complete sentences, having other kids WANT to come to our house, and happy children who love life

Photo above found at:
http://pace067.deviantart.com/art/playing-76538743

Autism: Who are you?

I have two young children with Autism, ages 8 and 4 years old. Needless to say, life is pretty interesting around here most days. My husband and I have begun to settle into the life of Autism, as much as settling is possible, I suppose. It has been a difficult journey and I am well aware we are only beginning. Like many fellow parents of children with Autism, I have read nearly every book on the subject, been to every seminar, and tried every treatment. We often surprise ourselves with the things we are willing to try in an effort to eradicate this inexplicable monster, Autism. Many statistics today now say that 1 in every 150 children being born will develop Autism. This is clearly an epidemic we're facing and I am sick of it!!! Autism, who are you and what do you want?!

While at the bookstore the other day, I made my usual perusal through the section on developmental disorders. I always like to see if there are any new "cures" being touted or if there are any new social stories that might appeal to my 8 year-old, who loves being taught how to better navigate the social arena. I cannot fathom what life must be like for parents who never have to go through that particular aisle of the bookstore and gaze with pity and horror on us parents who stand in that section for hours. I am not ashamed to admit, I often feel very jealous of parents of "typically-developing" children. The books were well-stocked on this fine day until I came to the shelf on Autism. The books were sparse in this section and I thought to myself, "Another happy hopeful parent has been given the news, 'Your child has Autism.' " This parent then made a quick trek to Barnes and Noble to get better acquainted with the monster. Even as our children grow older, I believe the desire remains for many of us to see this mysterious disorder resolved and understood. I began to feel very angry, not just for my own children, but for all the children that very day whose parents were sifting desperately through the many books.

Later that afternoon, I had a co-worker approach me. She explained that she had been babysitting for a 2 year-old boy and was beginning to have concerns about his development. Given my experience with Autism, it is not uncommon for friends, parents, or teachers to ask me about the disorder. She began to rattle off a list of concerns that sounded like classic Autism. Some of these early indicators would be apparent around age 2 0r 3 and include: failure to begin speaking or significantly delayed speech, resistance to eye contact, often does not respond when name is called, tends to line up or stack toys repetitively, issues with food or clothing texture, hyperactivity or extreme lethargy, resistant to social contact, and fascination with small parts of toys rather than the true function of the toy. The child my co-worker discussed had nearly all of these early signs. I confirmed her suspicion and we discussed the best approaches to having a parent get their child assessed. This is a touchy subject for us parents, and we tend to not take kindly to friends and/or family gently telling us something seems out of sorts with our babies. After this conversation, I was reminded of some of my own early grief and anger. It began to resurface and I wished that Autism was standing in the room with me so I could stomp it ferociously into the ground.

Just a few days after that incident I volunteered at my daughter's school as a chaperon for their Christmas party. I was chatting with another mother and discovered that she too has a younger son with Autism. She expressed to me, "I know Autism is a horrible thing, but I really love my son just the way he is, quirks and all. I wouldn't change a thing about him even if I had the chance." I've heard other parents of children with Autism express this same sentiment and I smile and hold my tongue. I, too, love my children just as they are. They are intelligent and funny. They have oddities that are endearing. They are blossoming in school and amazing us everyday with the things they learn and accomplish. My husband and I anticipate great progress for our children. Nonetheless, if I were ever given the chance to have Autism removed from our lives, I would do it and not think twice. I hate Autism. I hate it intensely. It is a monster, a terrifying puzzle, and a kidnapper of children's lives. I have a fantasy that brings me peace and always puts a smile on my face-- I know that one day my children will have glorified bodies in heaven, where there will be no Autism. I truly believe this and I pray at night to God that He will not deny me the joy of watching the demon named Autism burn eternally in hell.

Autism, if I could speak directly to you, I would like to tell you this, "We have yet to understand you, and likely you are feeling very smug at your ability to destroy many lives. You can take my children's speech and their God-given understanding of human interaction. You can hold them back and pour on the anxiety, but you can never extinguish the unique spirit of the child. You can take no child that is loved. There are sparks within my children you have never touched and never will. I don't understand you, but I trust my God to deal with you... and your day is coming."