The House That Autism Built


I used to be such an organized person. If I wanted to find something, I knew exactly where it was. And I would spend time cleaning and arranging the china cabinet — and sit back and admire my nice, clean, organized house.

Then my son came along…

.. and yeah, we don’t have a china cabinet anymore and all of the china, passed down for generations on my husband’s side,  is tucked away in a box for safe keeping.

At first he was the easiest baby. I could put him anywhere and he would stay put and be happy. Sometimes he would be so quiet and content I would think I forgot him and check the car seat or stroller to make sure he was  there.

That was for about the first 6 months of his life. From the moment he was able to move around he started testing his limits. He became determined to climb everything and he would try to walk and then fall. I even bought him a helmet (Bumper Bonnet – we loved the Bumper Bonnet!)

I understand certain opinions one may have about this ... but he never wore it in public, and he loved it cause when he fell it didn't hurt.

 

He started walking at 9 months.

And pretty much since then the level of chaos and destruction has grown exponentially by the day.

My son has super-human climbing and balance skills… and he is always working on improving his craft:

And of course he keeps the messes interesting:

And so here I am… I have about an hour before I have to get the kids from school, and I should be cleaning “the house that autism built”. But it’s so hard to get motivated to clean the same messes again and again. So instead I will just sit here and write about how I should be cleaning. Good plan, eh? 🙂

Join me on facebook :)


Hi — I just set up a facebook page for Super Mom Jess 🙂

https://www.facebook.com/home.php#!/pages/Super-Mom-Jess-Autism-mom-and-so-much-more/186497428064169

I need 25 fans before I can have a real url I guess … please hop on over there and “like” my page…thanks 🙂

How did I accidentally adopt a pit bull?


Our beloved cat was eaten by a coyote. 😦 I know right!?!  A coyote!

And our dog was really sad when the cat didn’t come home. He was totally depressed. He just moped around the house and he didn’t even really seem to look for her — somehow he already knew she was gone. It was obvious we needed to adopt another pet so he wouldn’t be so sad and lonely. And we agreed to get a dog instead of a cat, since the cat may just end up getting eaten again.

We went to the doggie jail and looked at several dogs, walked them and played with them. I didn’t even look at the pit bulls. I have kids, one of them has autism — no way we would want a  pit bull.

As I walked by the cages one dog stood out because she wasn’t barking. All of the other dogs were jumping and barking but she was just sitting there quietly looking at me. The paper on her cage said she was a Tibetan Terrier mix. She was so cute. We walked her and played with her and she seemed to be a really sweet dog.

I had no idea what a Tibetan Terrier was. We went to lunch and talked about it and decided to adopt her. I was so excited and went back to get her.

This is a Tibetan Terrier:

This is a pit bull:

Pretty big difference – right? Yeah so this is the dog I adopted:

 

She looks just like a … Tibetan Terrier, right?

Yeah, I thought so too.

So after accepting the fact that I accidentally adopted a pit bull I started researching the breed and found out they are great family dogs. They are sweet, loving, loyal, good with kids, great guard dogs, they love human interaction and are just big loves. We assume they are aggressive dogs, but they have been great family dogs throughout history and have just recently received such a bad reputation.

Another lesson on why I shouldn’t ever judge someone, or somedog. I should have never judged the pit bulls —  and I feel bad for not even looking at the cages with pit bulls in them.

I am very glad I accidentally adopted one, she is a very welcome addition to our family and such a good girl.

I felt like I left with a different little boy than I came with


    

     He was always different. And while I was pregnant with him routine blood tests came back with indications that he had a 1 in 20 chance of having Trisomy 18 – a severe chromosomal disorder that, if the child is even born alive, results nearly 100% of the time in death before age 1.  So when he was born and he was perfect, I was actually quite surprised.

     I was sure something would be wrong with him after the test results and all of the warnings from the doctors. After all of the special ultrasounds came back normal they told me we should still be cautious, that he could still have some sort of chromosome issue. One doctor actually said “You should still worry.”  … Who says that to a pregnant lady?

     After he was born I asked the nurses and doctor several times if they were sure he was all right and healthy. They assured me he was. 

     It wasn’t until he passed his 2nd birthday that I was convinced something was wrong and came to the doctor with a list of symptoms/concerns about his development. More info on this can be found on my previous post: What is autism? How did you know he had autism?

     It was April, Autism Awareness Month, and there was a ton of coverage on TV about autism. And a lot of the stories hit home and reminded me of my son. I made an appointment, holding back tears, to talk to the doctor because I was really worried he had autism. The nurse called back and helped me feel better, she said “God chooses special people to have special kids” and it did make me feel better.  And I do believe that. She told me to write a list of my concerns and also what he eats, how he acts, etc.

     The day arrived for the appointment with the doctor. When I got halfway through reading the list I had composed (doesn’t respond to name, spins in circles, walks on toes, in his own world, etc.) she stopped me and said he needed to be evaluated. 

     The steps to follow are intimidating for anyone, especially an unsure young mother – 27 years old – who is also overwhelmed with the business she owns as well as her 4-year-old daughter. Teams of people came to my house to evaluate him. Therapists were booked and they started to come to the house twice or three times a week. I was given assignments: make him ask for each item of food, stop the swing and wait for him to look you in the eye then say “go” and push him, get him ready for full-time school that starts at age 3.

     The therapists who don’t have children of their own irritate me the most. They give assignments that are unreasonable since they don’t understand what it is like to be the mom of  young children.

     Once the teams came in and asked a million questions we were referred to the neurologist.  We had to wait a month for the appointment.  The day finally arrived and the nurse practitioner entered the room. Up until that point no one had used the word “autism” when referring to him. They used the terms: “developmentally disabled” or “delayed”. 

     I said, “I think people are hesitant to use the word autism.” 

     And the nurse said, “Ok – autism.” 

     That was how I got the diagnosis.

      Afterward we went to play at a playground before hitting the road back home. I remember looking at him differently, re-evaluating his future as he played. The diagnosis was brutal, cold, and routine. And it had changed our whole world forever. I felt like I left with a different little boy than I came with. Even though I had known the whole time that something was different about him.

     Since his diagnosis – May 30, 2007 – life has been a blur. Before he started full-time private school (Hooray for scholarships!) I used to drive to and from therapy appointments all day long, as well as run a business that is open 7 days week, and care for my typical daughter. I  had therapists in and out of my house several days a week for years. Now thankfully he gets all of that therapy at his school so I just drop him off at one place and pick him up later. And therapists don’t come to the house anymore. That was a lot of pressure to always have the house clean for the therapist — even though they assured me they understood why I would have a mess, I still felt such pressure to be  sure the house was clean. I guess I didn’t want to spoil that whole Super Mom image.

    An autism diagnosis is nothing to fear and I feel SOOOOO blessed to be his mommy.  He’s an awesome kid and I wouldn’t change him for anything.

(my daughter’s awesome too – but since she doesn’t have autism she doesn’t get much mention on this blog — I will have to try to mention her more since she is such a great sister and daughter )

He is way smarter than you might think he is


Sure he doesn’t talk much at all. He seems in his own world at times, and getting his attention can often be quite the challenge. He would rather push you down the slide than talk to you or listen to you. It’s because he likes to watch things go down the slide — not because he likes to push people. You are just furniture in his life.

So I can see how one would then possibly come to the conclusion that he is not very smart. Mentally retarded. Not aware of what is going on, etc.

Wrong.

As far as intelligence goes, he hit some milestones before my typical daughter did. Like his ability to count at a very early age, his total mastery of the alphabet by age 3, his super genius puzzle skills, and his understanding of mechanics and how everything works. He knows how to work an iPhone or iPad better than I do. He is also pretty darn good on the keyboard and drums, and he sings and dances like a star. 🙂

Einstein was a late talker and some think he may have had autism. As well as many other great minds throughout history including: Nikola Tesla, Thomas Edison, Isaac Newton, Mozart, Beethoven, Van Gogh, DaVinci .. the list goes on and on. They were absorbed in their work and often times anti social and what most people would consider “weird”. And yet we recognize them as geniuses who changed the world.

He is just ignoring you. He has other things that he is interested in instead of communicating or socializing with you. Don’t get me wrong, he does communicate — he talks and uses sign language and is improving everyday — and he does like to be social. He loves his family and loves having people around. And tickles. And hugs. And dancing and singing with me.

Just because he is ignoring you doesn’t mean he isn’t aware and he doesn’t have intelligent thoughts. It probably just means you aren’t as interesting as watching himself dance in the mirror, or Elmo, or the iPhone.

What do you tell your typical child about a special needs child?


     I understand the confusion about how to act when someone isn’t as typical as the people we are usually around. I remember myself before I was an autism mommy and I also had a hard time knowing the best way to act around someone who is different. Now I am on the receiving end, and I realize people simply don’t know how to act sometimes.

 Typical reactions we get once they realize he is “special” are:

  • That sweet, pitiful smile. You know the one I am talking about. It’s the same one you give to the guy in the wheelchair. I used to get the same smile from everyone when I had a broken foot and used the mechanical wheelchair in the grocery store.
  • The “look away he’s got something wrong with him” reaction. You know, when you look right at him and then you are scared we will think you are staring so you do the opposite of staring – you direct your eyes away so as not to seem like a looky-loo.
  • The audible “Awwwwwww” like the same sound you make when someone tells you their puppy died.

     But the reaction that has me the most irked lately is the way most parents respond when their typical child is trying to talk to my child with autism.

     Here’s a scenario to illustrate:

     My child is running back and forth on the playground. The other child approaches him and asks “You wanna race?”

    The mother comes over and gently nudges her child away from my child saying “It’s ok. Let’s go play over here. Let’s leave him alone.”

    The kid asks “Why?”

    The mom says “It’s ok. Shhhh. Come on.”

    And I look at her with the half-angry half-puzzled “Really?” look. And they walk away before I can turn it into a teaching moment like I usually do.

     She basically just dismissed my child. I also get the same reaction from my family. My son isn’t invited to family functions but my daughter is. They take my daughter with them to have fun and never once mention my son. Or me for that matter. It hurts because it feels like once he was diagnosed with autism he wasn’t really a “real” member of the family anymore. They don’t even try to get to know him. I know that they are the ones who are missing out. My son is so awesome! I am the lucky one. If they don’t want to spend time with us then it is their loss.

     I work with kids all day – either I am actually at work  – a job that involves lots of kids all the time – or I am at home with my two little dumplins. Either way, I have way more kid conversations than adult ones. WAAAY more.

     So if you ask me what that mom should have done, here is my answer:

     At the point when her son asked my son if he wanted to race she should have acknowledged my child as someone who is aware and who likes to have fun just as much as the next guy. Instead she did the opposite – she disregarded him and dismissed him. Luckily my son usually isn’t paying attention anyway, and I am sure he thinks people are totally strange so he isn’t phased by their dumb behavior. But I am.

     Usually my son stands out as the oddball since his behavior doesn’t fit into most people’s little cookie cutter idea of how kids behave. Though they can spot that he is different, most still cannot identify that he has autism. Usually I throw out  the “He has autism” as I run by chasing him since I can feel all the “Why can’t she control her kid?” looks.

     I am always happy to answer questions to help you better understand my son. Don’t forget – there are no stupid questions, just stupid people.

     So in this instance, if the boy’s mother can tell that my son is different but is not sure what his disability is she can ask me something like “Does your son want to race with my son?” Or better yet, ask my son directly “Do you want to race?” Or she could just quietly observe and listen since her son started this conversation, not her.  

     This does two wonderful things. It shows that she is not going to just disregard him and shoo her child away from him. And it shows that she is interested to know if he wants to play. It is also a nice veiled way of asking “So what exactly is wrong with your kid?”

     And now that she has opened up an opportunity for conversation instead of just avoiding us, I can chime in and explain my son to her child the way that she should have.

     I can say – “I don’t know if he wants to race. He might want to race with you. He doesn’t talk yet but he can still play with you. He has autism, and that means that his brain works a little differently than yours, but he is still the same as you in a lot of ways too. He just doesn’t talk and doesn’t listen very well yet either. But he loves to run and play just like you do.”

     Then my son isn’t treated like a poison on the playground to avoid. And the little boy understands autism a little bit now since it was actually explained to him instead of just being brushed off with an “It’s ok. Leave him alone.” And most parents are amazed at how much their kids know about autism, and how they often times have a kid in their class or a friend on the playground who has autism. Remember 1% of the kids have autism, so they are everywhere. 🙂

     For more info on how to be a good friend to someone with autism I recommend this book.

      

     It is written by Reno, an awesome kid who has autism and speaks publicly about understanding what it is like to have autism and how to be a friend to kids with autism.

       So how do you talk to a typical child about a child with autism? Well, first don’t underestimate how much your kid can understand and how accepting they are of differences in people.

     I hope you teach them to accept people for who they are. Simply explain that they are different, we are all different, and they still are the same as you —  just different. 🙂

    How do you treat someone with special needs? The same way you treat anyone else. Look past their disability. Look at the person inside, the person in there that is just like you and me. No pitiful smile, no awwwwww, no looking away or brushing them off — just treat them like people. It’s really not that hard when you think about it. People feel awkward cause they are focusing on what makes them different instead of what makes us all the same.

Autism isn’t as scary as the news wants you to think


     Are you afraid of autism?

     When I was pregnant I was afraid of being too stressed out because I heard stress causes autism. I stressed over not stressing.

      I know the main reason I get the same questions over and over again about autism is because people are afraid. They want to know how they can dodge this bullet.

     Fear not.

     Autism occurs in 1 in 100 children and 1 in 70 boys.

     Scientists have NO CLUE what causes it. No matter what the study you heard on the Today Show said — the fact remains, they have no idea what is causing autism.

     It is believed to be genetic. There is no test for the gene. So you have no way to know if you have the gene.

    So really, it’s a crapshoot.

    No matter how many things you avoid, no matter how much you worry about not worrying, no matter how close in age your babies are, or whatever the latest study is telling you to be afraid of, your odds are the same. And frankly, they aren’t that great as far as avoiding this thing you fear so much. If you have a kid, your kid has a 1 in 100 chance of having autism. If that child is a boy, he has a 1 in 70 chance of having autism.

     AAAAAHHHHHHHHHHHH!!! I’M FREAKING OUT!!! SCARY STUFF …. right?

     Nah. Autism isn’t scary and it is nothing to be afraid of. I think it is a gift – and so does Dr. Temple Grandin – she has autism and she wouldn’t change it for anything.

    And I wouldn’t change my son for anything. He is perfect and awesome just the way he is. (Yes, I really think that. I really wouldn’t take his autism away if I could – though I would definitely get rid of some of the not-so-fun behaviors.)

    So I think you should just take a nice deep breath (deep breath in …. deep breath out …… there …. doesn’t that feel better?) and stop worrying so much. Your kid will be fine, and no matter how much you worry and avoid things that may cause autism — he will still have the same odds of having autism. Sorry Charlie.

   Fear not. Everything is as it should be.

Yes, I have my kid on a leash. And I know what you are thinking. I used to think the same thing about people with their kids on a leash.


     Back when I was a know-it-all nanny/preschool teacher I had it all figured out. I knew that when I had kids of my own my child would not be sucking a pacifier after the age of 2. My kids would listen to me and respect me and would not whine. And I would never ever put my child on a leash. 
     I mean, who does that? It’s a child not a pet. I can understand a child with special needs benefiting from a harness, but this child is obviously fine. He doesn’t seem to be mentally disabled, I see no obvious disability. So the only reason I can think that this child is leashed is because the mom is obviously a weirdo. Just take the time to watch your kid, and teach them about danger — don’t put them on a LEASH! Seems inhumane if you ask me, the poor child being pulled around on a leash. What is wrong with that mother?
     And so here I am. Almost ten years have gone by since I was a nanny or worked in a preschool. My kids whine —  A LOT!  My daughter had an extreme pacifier addiction and sucked on one until she was well over the age of 3. Until I noticed that it was actually moving her teeth, then we finally had to get a visit from the “Binky Fairy”. The Binky Fairy took all the binkies (aka pacifiers) and replaced them with money, but it was still months before my daughter stopped crying for one. 
      And … my kid is on a leash.
 
He is staring at the stream going under the bridge. I bet he could watch that stream all day.
                                                          My kid on a leash enjoying the fireworks 🙂
      My 6-year-old son has autism. One of the most common things I hear after I tell people that is “He doesn’t look like he has autism.” And then I have to explain autism and all that stuff. So to explain why he doesn’t “look” like he has autism you can read my other post “He doesn’t look like he has autism” and to understand what autism is I have just the post for that too – it’s called What exactly is autism? How did you know he had autism?
       My son has no concept of danger. He will run in front of a car, he will run into a lake or a pool even though he can’t swim, he would probably jump off a balcony without a second thought. His receptive language skills are not that great yet. Receptive language is the ability to understand what you hear, to comprehend spoken words, follow directions, etc. He is getting better, but it is still like I am speaking another language sometimes. He just doesn’t understand what I am saying. So I can say “Watch out for cars, stay off the road, watch out for water, STOP!, don’t eat that, be careful” and all that stuff until I am blue in the face — and he will simply not understand what I am saying.
     I get invited to a party with a bonfire and all I can think is that there is a 97% chance my son will end up in the fire. When a car zooms by us I think of what would happen if I didn’t have him by the hand or if he got away from me and darted into their path. At the park I can’t take my eye off of him for a second because he will climb the fence and run away, into the road, into the lake, into an alligator’s mouth,  you name it – any dangerous scenario you can imagine is one my son would walk right into without a second thought.
     I can’t predict his behavior very well. When we get home he gets out of the car and walks to the front door. I usually hold his hand to make sure he doesn’t run, but usually he just walks to the door anyway since he is happy to be home. So one day I had my hands full. I let him out of the car and assumed he would walk to the front door like he always does. But nope. No luck. He ran as fast as he could right past me and into the road, then down the road three houses before I could catch him. I drive myself batty thinking of the what ifs …. what if there had been a car coming. I am consumed by the thought of something happening to him. And just when I think he is getting better, he runs away from me again. When I yell “STOP!” he runs faster.    
      He got away from me at the zoo once and I thought he was going to make it to the exit and into the road. I ran as fast as I could and tripped and fell. I bashed my head on an ice cream machine, threw my back out, skinned my knee, and still managed to catch my kid. It’s amazing how many thoughts I had when I hit my head.
     First I thought – “Man, I hope I don’t get knocked out” then I noticed I was still conscious so I thought “Gotta catch the kid” and I grabbed him by his shirt and then thought “Where’s my daughter?” then I saw her and thought “Oh man I am hurt!”  — all seemingly before I hit the ground. Then people crowded around me and asked if I was ok. I was just embarrassed and wanted to crawl into a hole. Of course the zoo staff went into action with the accident report etc. and offered me free passes but I said I was fine, and I am a zoo member so free passes do me no good. Though looking back I should have just taken them anyway and re-gifted them.
    Anyway, long story short — my kid needs to be on a leash. For his safety and mine.
 
    And he LOVES his harness. 🙂
 
     My children have taught me many things. I thought I was an accepting, open-minded person. But I was very judgemental. I assumed I knew things I didn’t. My son has taught me to never judge, because you never know what someone’s personal struggles are.
    So if you see a child on a leash, instead of assuming the parent is an idiot try to  assume that they have a very good reason for needing the kid on a leash. 😛
 
    If you need a harness, or know anyone who does, I recommend you get it from Children’s Harnesses by Elaine. I have no personal connection to her so this is not just a shameless plug. I am just really happy with the quality of the harness, and after searching the internet for days I feel I really did find the best harness out there. It is strong and durable but still nice and soft. She hand makes them specific to your child (or adult’s) size. My son loves wearing it, he loved it from the moment I put it on him because it gave him freedom he isn’t used to having. I always have to lead him by the hand since he could run off at any moment. He loves being able to walk “on his own”. 🙂

“He doesn’t look like he has autism.”


 

What do you think autism “looks like”?  Like Rain Man?

Doctor: Raymond, do you know what autistic is?
Raymond: Yeah.
Doctor: You know that word?
Raymond: Yeah.
Doctor: Are you autistic?
Raymond: I don’t think so. No. Definitely not.
                                                      —- From the movie Rain Man

     Autism can only be diagnosed by observing behavior. There is no blood test or brain scan that shows that they have autism. There are no characteristic facial traits or other physical signs of autism. They look just like anybody else. For more details on autism I recommend you read my other post: What exactly is autism? How did you know he had autism?

     They don’t all look and act like Rain Man.

     Though some are savants, they aren’t all human computers like the character in Rain Man. And actually, though the person they based the character on had autism like tendencies — his actual diagnosis wasn’t autism. 

     His name is Kim Peek:  “Kim Peek was born on November 11, 1951. He had an enlarged head, with an encephalocele, according to his doctors. An MRI shows, again according to his doctors, an absent corpus callosum – the connecting tissue between the left and right hemispheres; no anterior commissure and damage to the cerebellum. Only a thin layer of skull covers the area of the previous encephalocele.”  He had an ability to retain 95% of the information he received, most people remember more like 45%.  (I grabbed that info from this site)

     So you are right. My son doesn’t LOOK like he has autism.  But he sure does ACT like he has autism. 😛

“I don’t know how you do it.”


     Well first of all – I don’t have a choice. I guess I could just be a reject mom and neglect my kids or run away, but if I don’t choose that route the only other option is to “do it”. I do it because I have to, because I don’t have a choice, because this is my life – and these are my precious babies. I do it because I love them, and I love my son with autism even when he is covered with poop, and I do it because I am the mom and it is my job. But my son is definitely lucky he is so cute because if not then I might not put up with all the adventures in poop. (ok I promise I won’t talk about poop anymore in this post)

     But aside from that, I think what really helps me “do it” is my positive attitude. And also my husband’s positive attitude and his calm in crisis which I am not so good at. You know that is actually one of the positive aspects of my husband’s ADD – that he is calm in crisis situations.  I have a feeling there will be a few posts about the negatives of having an ADD spouse (sorry honey) but at least I have admitted there are positives too. 😉

     So I tried the negative, poor me, life sucks attitude. It didn’t get me very far.

     After my son was diagnosed there was a definite mourning period. I mourned the loss of the son I thought I had, the one who was going to grow up to play major league baseball, the one who was going to talk before the age of 5, the one who was going to understand what danger is and avoid dangerous situations. And I was sad for about a year. I was embarrassed of him at times, I thought “Why me? Why us?”, I cried when I thought about how detached he was and how I couldn’t communicate with him. And I think it is healthy and normal to have that mourning period. Just like mourning a death, mourning the loss of my “typical son” went through the same phases:

  • Shock  (Autism? Really? But the pediatrician said he was fine, “a walker not a talker”)
  • Denial (He is very high functioning and should be able to be in a regular kindergarten class by the time he is 5)
  • Bargaining (Maybe it’s his diet. If we just change his diet then he won’t have autism)
  • Guilt  (If only I didn’t eat McDonald’s or lobster when I was pregnant. I should have known more about the vaccines before I let them inject him. I was under too much stress when I was pregnant and that is why he has autism. I had too many ultrasounds.  — I could go on all day talking about the guilt I felt.)
  • Anger (Why do I have to have a kid with autism? Why can’t I have the typical little boy that I thought I had!?! It is so hard – I can’t handle this!! He is so difficult – MAKE IT ALL STOP!!!!)
  • Depression (<sob>My son can’t communicate with me and pushes me away. <sob> I feel so alone, no one understands what I am going through. I am a bad mom, I should be able to do better. <sob>)
  • Resignation (The diet isn’t going to help. He is just different and he always will be different. We are not a typical family – we will not blend in, we are not “normal” and we will be stared at when we are in public.)
  • Acceptance and Hope (My boy is awesome just the way he is! He is so sweet and smart. He is such a joy. I am so blessed with my two beautiful and healthy babies. He is making great progress and can maybe even lead an independent life one day.)

     So that took about a year, and once I was at the acceptance and hope part I realized that a positive attitude makes such a big difference. Like the poster said in my 3rd grade classroom “Attitude is Everything”.

     I could go on and on about positive thinking and how our thoughts determine our reality – and I probably will – but that is for another post. For now, I leave you with a song 🙂

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