Autism Isn’t A Tragedy, Ignorance Is

I’m done mourning the loss of a “normal” child that Karter could have been. I have been mourning for Karter for the last 8 months and I’m done. I’m emotionally drained. I have decided to kick myself in the butt and accept it. For crying out loud I’m not the one that has to deal with not being able to talk, to not be able to show the right emotions for how I’m feeling, to not be able to eat certain textures of food because it is down right painful. I’m not the one that doesn’t know how to interact with other children, or know what he is feeling when he wanders away, or that he has no sense of stranger danger, or danger in general.

In fact I just read on the Huffington Post Todd Drezner’s: A Parent’s Guide to Responding to a Child’s Autism Diagnosis. He gives some helpful  guide lines that I would recommend everyone to read.

I have been trying to focus all my negative energy about Karter’s diagnosis into something positive, I signed up my family for the Walk Now For Autism Speaks 2012 and created a team in honor of Karter, we’re called Karter’s Cartel.  I have been educating my family and friends on Karter’s diagnosis and on vaccinations. I have lost some friends (pro-vaccine) and gained many more (anti-vaccine).

 

 

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The Wild Wild West, We Made it.

Sorry followers I haven’t been on top of writing. It has been a crazy and hectic ride. I was lucky enough at the last minute to have my Grandmother drive down with me and the boys.

I was so surprised at how well both boys did.  I am pleased to say that Karter was phenomenal during the whole car ride. Jax did great too. I never had TV’s in my SUV. I always figured that driving to the store we could sing songs or what not. But having them in the car before we left and the boys amazement and fascination with a television in a car is what saved me on that 3 day car ride.

When we arrived to Phoenix the boys were so excited to get out of the car as I  and my Grandmother. The first week Karter wasn’t on any schedule and didn’t have any routines. He almost seemed happy and had very few outbursts. But this week has been rough. Trying to establish new routines and a new schedule. We’re also staying with my inlaws for another week before we move into our new house. We have no furniture until my husband gets here next week. Karter is surrounded by unfamiliar objects and in a new place so he is having a hard time adjusting. I’m sure things will be back to normal once we’re in our new home with familiar surrondings and things get back to normal.

Karter is DD eligible in the state of AZ. Therefore he receives all of his therapies free of charge, He also will be getting in home therapy so we don’t have to travel to a facility. This is only until his 3rd birthday which is in June. After he turns 3 they will make a smooth transition for him and will be in an Early Intervention preschool that will help meet his needs. As of now Karter only needs speech therapy.

Karter is trying to speak more this past couple of weeks and learning new signs. He is doing fantastic. However he has been off a Gluten Free diet and his episodes (when he has them) have gotten to be worse. I’m sure it will take some time to get the Gluten out of his system before he gets “better” with his tantrums.

I am having some trouble getting him to eat other food groups besides dairy. He seems to only want cheese sticks, mac and cheese, eggs, or gold fish crackers. There is a grocery store not far that sells only GF foods called the Gluten Free store. I haven’t been in it yet but my sister told me about it. I’m excited to go shopping there and not having to worry about reading ingredients with both boys. Life is going to be so much easier now that I know of this store.

Karter and I have a lot of help and support with my family here and I am so thankful for this. Everyone is learning to have patience and nobody makes me uncomfortable when Karter has an episode.

Jaxson on the other hand (my 3 year old son) Is not his normal self and this move has been the hardest on him surprisingly. Every night he cries for his dad and wants to go home. I’m trying my hardest to make him feel better about the move. Getting him involved in picking out his new bed and bedding. Picking out things and decor for his new room. The boys will have their own rooms and hopefully they rest better this way. Jaxson is very excited about this. He is bummed we wont have a pool but I am very excited we don’t, one less worry off my plate. The backyard will be perfect for the boys, its big and fenced in. With nothing but grass. And we have a doggy door for Holly our 4 year old Beagle.

Jaxson will be starting preschool this fall and he is excited about finding a school.

I miss my husband very much but talk to him at least 3 times a day. He really misses us. Karter will sit on the phone and babble to his dad for about 2 minutes and then its off to find what ever catches his attention. My patience is getting much better as well. I keep telling myself 1 more week and we will be in our own home where I can “Autism Proof” everything like it used to be. Will be updating more often things have been crazy hectic.

Packing for Arizona

So any move is hard on anyone. Can you imagine my stress moving across country? How about Karter’s stress?

It has been an ugly couple of days. It’s only going to get uglier.

I wonder what is going on in his little head, what he is thinking.  Does he understand me when I tell him we are going to live in a new house. Will he understand it’s going to take 3 days to get to the new house? How about how he is going to be completely off his routine until Wednesday. Gosh I’m already dreading this drive, but Karter’s episodes are going to be bad I can feel it.

Anyways, I started packing up his room, taking all his familiar belongings and putting them in boxes, bags for the trip and a suit case, just in case I need to get to it ASAP during the drive. It is 7:21 and Karter is STILL sleeping. This is unheard of, however he had a really long and stressful day yesterday so maybe this extra sleep will be good for him.

Jaxson stayed his last sleepover at my parent’s house (they live right across the street). Jaxson is VERY excited to move. He has been a great helper and has helped me pack. I know he will be good on this trip, he has made the long drive before and loves to be in the car. However he did make it clear he would rather fly in an airplane. Me too Jax, Me too…. I had to explain if we flew we wouldn’t have our car and then couldn’t go anywhere. He giggled and told me that I was silly.

The boy’s beds and furniture will be disassembled today, Karter is really going to have a hard time with this one. After seeing all the toys packed away yesterday, he started to bang his head on a wall. I hurry up and grab him. Wrap my limbs around him, hold him tight, and rock while singing the Brown Bear Brown Bear book (I have it memorized). Hoping that he calms down for a second just so I can explain again what is going on. He hates to feel “out of the loop.”

I like to think of Karter’s episodes in Stages 1-5. When Karter’s episode reaches stage 5 there is no turning back and it’s going to take him hours to calm down. And even after he is calmed, the rest of his day is ruined. I cannot let him reach stage 5 no matter what.

My husband has installed a DVD player and TV’s for the kids to watch on the long trip. Lets hope this helps Karter. I also have SOME of his cars not his usually 2 cases. I bought a Rafi sing along CD combo pack to also sing along with, His 3 favorite books, coloring, and lots of snacks.

My family has been Gluten Free (GF) since November. We went GF because of Karter. We realized his episodes went down significantly when not fed Gluten. Being GF we don’t eat fast food. This is also going to be a bit of problem for the drive. Karter is very picky on what he eats and most fast food restaurants only have salads that are GF. And I could never get everyone a cheeseburger and him a salad. That is just cruel. I will be bringing a cooler with snacks and meals that are GF but I doubt it will last for three days. I guess if need be we could always pull over to eat at a restaurant. Come to think about it that would be the best bet. I know I can always get him a grilled chicken breast and mashed potatoes.

Karter woke up at 7:30am this morning. He has been upset and in an episode all morning because nothing is following his routine. I need to go but I’ll be blogging later tonight and I wont be blogging until after we reach our destination on Tuesday night.

As of this moment Karter is in stage 2 of his episode he now is picking up the empty toy bins and throwing them around my living room. This is his way of communicating he is not happy that all the toys are packed away. Next thing that will upset him is me picking up the bins and packing them. I’ll also have these episodes video tapped so you can see what is happening when he gets into episodes.

These videos are not intended for entertainment but for documentary purposes. Also if you think your child could somehow fit into the ASD you could refer to this blog or videos and then speak to your pediatrician about this.

 

 

Routines

*During the whole day his blanket wont leave his hand unless we leave.

Karter will fall asleep in his own bed in his own room at 8:30pm.

At 4:30 am he will wake up and crawl in bed with Mike and I. Most times Jaxson will wake up as well.

Karter wakes up at 6:58am every morning. He wakes up screaming and crying and kicking me in the bed. I try and get out of bed as fast as I can and I’m not much of a morning person.

We come out to the living room, still crying, I turn on Thomas the Tank Engine, and grab him a drink of juice. He is happy.

I get Jaxson settled, get my coffee, and cuddle for one episode.

Then if I haven’t got his cases of cars opened and sitting on the kitchen table with a chair pulled out he gets in an episode. Do not try to give him his cars anywhere in the house only at the kitchen table.

As he evaluates them I start on breakfast, Jaxson usually helps me. We eat surrounded by hot wheels. Karter usually eats only his scrambled eggs. We can’t remove cars or touch them during breakfast. This time I will tell Jaxson what our day is going to be like. Karter pays no attention.

I pull out our board with pictures (PECS), I show Karter what our day is going to be like as well as talk and describe the pictures. Cars are still on table, don’t even think about touching them yet. After PECS are done, more Thomas the Train on TV or Curious George (Jaxsons favorite show) if Jaxson decides to watch a different show, Karter gets very upset, but we share the T.V. When Karter doesn’t get what he wants he moves on after a tantrum and will play with cars again.

During this time I get some house work done. After that is done We will due activities, color, puzzles, stringing beads, play outside, play dough, music and dancing.

at 11:15am he is ready for a nap. Usually grabs his blanket and takes himself to bed. We will read Brown Bear Brown Bear right before nap. Karter must sleep in his own bed in his own room by himself, Jaxson sleeps in my room. Karter will sleep for an hour and a half.

During this time I get myself ready for the day, more picking up and getting things ready for where ever we’re going that day.

Karter wakes up evaluates Cars- that are still on the table from this morning he waits for Jaxson to wake up. We eat lunch after both boys wake up. Karter prefers liquids or texture like yogurt. Likes all dairy products and loves Mac and Cheese. Cars still on table

After lunch is bath time and getting dressed. Karter loves Bath time he is ready to pick three cars to take in the bath with him, the rest he needs to swipe on the floor. We then pick them all up and put them back in their case. Case immediately goes back to where it belongs. He carries the red one I carry the clear one.

Gets into bath gets ready to leave. He has to pick out his own shirt always jeans never leaves without his wintercoat. We walk out to the car he has an episode because our dog, Holly, is locked up.  Karter refuses to sit in car seat usually take me 15 minutes to get him to the car and buckled in. Jaxson gets in his seat and buckles himself in because he see’s I’m having a hard time with Karter. I ALWAYS double check the boys are both buckled in properly.

I get into the car buckle myself. Karter still crying and screaming. Starts shaking his head. I keep myself calm and try keeping him calm by singing and handing him a toy car. He stops instantly.

I turn on the car, he starts laughing and clapping hands. His way of saying “okay Mom I’m ready to go”.

We get to where ever we’re going, we have to take certain routes to certain places. So Karter knows there isn’t any surprise stops.

We get to Meijer, a store comparable to a Super Walmart. I park always next to “return your cart here” sign. I get out and grab one. Karter is the first one I get out and put him in the front. Jaxson is next and holds onto the cart and never lets go the whole time shopping. I usually have Jaxson holding the pictures of the food we need to get. Karter holds on to a stack  of pictures for cleaning supplies. We never switch.

This helps keep shopping smooth, organized, and helps Karter understand what is going on. I don’t bring lists I bring pictures.

Now that we have everything on our “list” we head for check out.

Meijers always has little lightning McQueen Cars next to the candy (Karters favorite cars). As a reward for being good and tantrum free Jaxson always goes for the peanut M&M’s and Karter would rather have the car than candy.

We get to the Car I load up the kids, Karter is happy with a new Lightning McQueen Car ( We have more than I can count) Jaxson is happy with his candies. I load up the groceries and we head home.

I unload the groceries first, than the kids. Why do I do this? To avoid an episode, Karter thinks I will leave him forever, if I run outside to unload our things.

We get into the house he sits at table plays with his new car I put away our groceries. Jaxson helps me put things away. We then do another activity.

At 4:00pm I start dinner. Karter again grabs his cases of cars and has to sit at kitchen table to play with them. Again I’m not aloud to touch any of the cars.

Jaxson puts on some music, we make dinner together. After dinner is done, it is a must that all cars leave the table. They are put away again. We sit down and eat. Usually Karter takes 4 or 5 bites drinks all his milk and is done for the night. Jaxson and I finish our dinner and he helps me do the dishes.

Karter loves doing the dishes as well so he pushes chair to sink when we are all done eating and helps us as well. We make a plate for daddy and throw it in the microwave.

Now it is around 6:30 PM we walk across the street to my Parents house, We visit with Papa and Nonnie for a couple of hours. Karter is in paradise and so is Jaxson. at 8:00PM my husband Mike gets home from a long day at work and we head home to meet him. He eats and visits with the boys and I for a half an hour. Karter is thrilled to see his dad, and wants to show all his toys to him and play with him.

Now it comes to bed time. Mike and I get the boys dressed for bed, brush their teeth put them in bed and while Mike cuddles Jaxson, I cuddle Karter and read three stories out loud, Brown Bear Brown Bear, Dr. Seuss Green Eggs and Ham, and Cat in the Hat. Leave room after kisses and Karter cries for 5 minutes. Jaxson says no words. Within 10 minutes I check on them. Karter is always fast asleep Jaxson just about. I always tell Jaxson how proud I am and what a good big brother he is and how much I love him.

After the boys are asleep I visit with my husband and we talk about our day. mike and I are in bed no later than 10:00pm and exhausted.

We repeat our day. Some days are different because of therapies and school, doctors appointment etc. The timing is all the same.  If one thing is out of the norm we have an episode. But for the most if we follow this schedule he has good days.

Signs, Diagnosis, Therapies

My name is Jaimie, I have a husband and 2 kids. Jaxson is 3 and is mainstream Karter is 2 and has PDD-NOS. Both boys are complete opposites. Both boys had vaccinations.

Signs:

People ask me,

“Do you think it was the vaccinations that caused Karter to have PDD?”

The answer to that question is I don’t know. I was naive, and ignorant when both boys were born. I listened to the doctors because, they’re doctors they wouldn’t hurt my children, they know whats best for them. The doctors and nurses didn’t tell me about the statistics of children getting diagnosed with Autism. The doctors and nurses pressured me to getting them, the  doctors and nurses would make me hold down my children while they gave them 5 vaccinations every 3 months.

Karter has always been different, ever since birth. I knew I wasn’t supposed to compare my children, but I couldn’t help it.

When he was a baby, he never cooed, he never wanted me to hold him he always wanted to be in the swing, I thought okay he likes the swing, but when this lasted until he was 9 months old. I knew I had to get rid of the swing. Karter would cry if he wasn’t in the swing 24/7 never wanted held or comforted.

Karter wouldn’t crawl until he was 13 months, he couldn’t walk until he was almost 2.

Karter had his last bottle on his first birthday, but then treated sippy cups like bottles and wouldn’t eat anything and only wanted milk in a sippy cup. All sippy cups were taken away on his 2nd birthday. Then he treated cups with straws like sippy cups/bottles and I took all those away shortly after his 2nd birthday. After all the cups were taken away he only could use little plastic cups, man we had lots of messes, but he started to eat.

Karter would never pay attention to his brother, he would prefer to be by himself. He didn’t show me affection until he was 9 months old, he didn’t show my husband, his father affection until October 2011. He doesn’t play with other kids but will observe them.

Karter has always been fascinated by toy cars. He started getting really big into them around his first birthday. He did and still does sits and examines his cars, color sorts them, this will go on for hours. He never really played with them. Never made them crash. If his brother Jaxson would start playing with the cars there would be a blood bath. Karter still wont share his cars, Jaxson has no interest anymore.

Karter would laugh at me when I would get upset at him, he would have deep belly laughs when I would try to discipline. I didn’t know he couldn’t decipher the emotions. He didn’t know I was mad, and here I thought he was being disobedient. When I wanted him to laugh he would have a blank look on his face. He never made eye contact for more than a second.

Karters tantrums were spiraling out of control. He started banging his head on the walls, floors, tables, pulling out his hair, biting himself. Then he started to pull my hair, bite, kick, and hit me.

I was reading discipline books watching the Super Nanny and was distraught why Karter was acting this way, when Jaxson never acted this way, I always got compliments on how well behaved he is.

Karter didn’t talk, Around 1 years old he said momma and dadda, but within 2 months it was like he forgot how to talk, and never agan said a word, as if they were lost.

Karter was also potty trained at 26 months. With no accidents for the past 6 months, and just recently has regressed back and once again is not potty trained.

In May 2011 my husband sat me down and explained how he thought Karter might have Autism. I was furious and in denial. How dare him say something was wrong with our baby. He was fine just needed more guidance and was going through the terrible two’s.

This put some stress on our marriage, him upset I wouldn’t get Karter evaluated and chose to be in denial, and me upset because he thought something was wrong.

His Pediatrician knew what was going on with Karter but never suggested getting him evaluated. In May 2011 I stopped getting him vaccinations per my husbands orders.

One appointment his pediatrician sat me down with the nurses and told me he needed his vaccinations and I MUST get them. I told them I’m sorry but my husband doesn’t want them anymore. They then turned to me and my mother and said it was considered “Child Abuse” for not vaccinating. So of course I didn’t want to get in trouble for “Child Abuse” and vaccinated without my husbands permission.

When Mike (my husband) got home that night and told him what the doctors told me, he was furious. He sat me down and made me watch documentaries on Autism and Vaccinations. The next day we found a new pediatrician and explained to her our fears that Karter was Autistic. She immediately agreed he was in the spectrum and sent us to a child neurologist, psychologist, and speech pathologist.

Those 3 doctors were going to cost us $1,300.00 after our insurance covered it. We didn’t care we wanted help. They couldn’t get us in until January 2012. He started Early On intervention per doctors orders for speech therapy. What do you know he started talking he now says a handful of words but mostly communicates through PECS, points and grunts, ASL, or getting it himself, We still deal with lots of tantrums or episodes.

Diagnosis:

After the meeting with the doctors they gave him his official diagnosis PDD-NOS in the Autism Spectrum Disorder.

What is an autism spectrum disorder?
Different people with autism can have very different symptoms.  Health care providers think of autism as a “spectrum” disorder, a group of disorders with similar features.  One person may have mild symptoms, while another may have serious symptoms.  But they both have an autism spectrum disorder.Currently, the autism spectrum disorder category includes:

  • Autistic disorder (also called “classic” autism)
  • Asperger syndrome
  • Pervasive Developmental Disorder Not Otherwise Specified (or atypical autism)

In some cases, health care providers use a broader term, pervasive developmental disorder, to describe autism.  This category includes the autism spectrum disorders above, plus Childhood Disintegrative Disorder and Rett syndrome.

Therapies:

Karter is to get one on one ST and OT. However our Insurance only covers 40 visits per year which wont even cover a quarter of the therapies he needs. Obviously its extremely expensive for these therapies that he NEEDS. Which leaves us moving back to Arizona. The state of Arizona has programs that Michigan doesn’t offer. The state helps pay for these therapy hours that the insurance wont cover.

I’m leaving February 5th which is a Sunday morning to start a long drive to AZ by myself with both boys. My husband will be staying back to finish selling our home and bringing our belongings. Luckily he works for a great company that transfers him when ever need be.

Why the rush? Karter is regressing, he is forgetting things like, going potty, eating, playing nicely, affection.

Jaxson doesn’t understand and its hard because he sees Karter having fits and he sees Karter not getting disciplined for every little fit he has, where as Mike and I are very strict on Jaxson. Karter has fits because that is his way of communicating.

Next time you’re in a store or out in public, and see a young child throwing a fit, don’t judge because they very well could be in the spectrum. Karter is smart and knows when he gets dirty look for not acting “normal” it just makes his episodes worse.