Autism Awareness

We are standing in line at a restaurant, it isn’t too crowded. Jake is overwhelmed by the lights and sounds but he is happy. He is excited to eat lunch out. Jake cannot stand still, he is constantly moving, smiling and pointing out familiar objects. We’ve been here countless times but each time it is brand new for Jake. To us he is cute and we see a little boy who is excited. To the bystander he may seem odd, it may look like he is misbehaving and it makes me wonder. I wonder if the parent I saw with her children thought I should make my kid be still; make him behave. Her kids were sitting, waiting patiently for their turn to order meanwhile Jake can’t quit moving, he cannot stop looking, touching and talking about what he sees. I don’t notice their stares at the moment, my thoughts are on what we are going to order and keeping my eye on Jake so he doesn’t run off. But later when I stop to think about the day I remember the looks and the stares and I can’t help but feel a little sad. My mind wonders to what the other customers were thinking; do they think I am a bad parent and I should control my kid, do they think he is bad? Should I care? Later Allie and I would talk about this day. She told he that she felt sad for Jake but more than anything she was angry. She said she wished she could put a sign on Jake that said ‘I am Autistic’ so people would see he isn’t a bad kid but someone with a neurological disorder and can’t help what he does at times.

Last night as I was going to bed I went in to check on Jake as I always do. He was sound asleep, his face was so peaceful and sweet and I just wanted to take him in my arms and hold him tight. He rarely lets me hold him and when I get the rare opportunity, it is a quick 10 seconds all the while he is squirming. I watched Jake sleep for a bit and as I prayed over him I began to wonder what the future holds for him. I wondered if he would be the freaky odd boy who others make fun of, if he will be able to make friends and I wondered how difficult autism will be for him. I wondered how much harder autism will be for us as his family.

Jake’s brain is different from a typical persons, the signals the brain sends get lost in the process and doesn’t reach him. Have you ever been nervous and you can’t quit pacing or tapping your foot? You try to stop but you just can’t, it makes you feel more relaxed…it feels good. Think about Jake or any other child you see constantly moving, tapping or spinning, it feels good, it makes them feel calm, it relaxes them and helps them focus. Jake can’t quit moving; it is in part autism and in part sensory processing disorder. I can tell him to stop, he tries but finds something else to move, spin or touch. I can tell him to sit down, he will but his feet, hands and head are constantly moving. This is not a kid who doesn’t listen, this is not a kid who is defiant and won’t obey instructions. He tries, I can see it in his eyes he just can’t do it. Now, I am not saying he is never defiant. Jake is strong-willed, stubborn and at times defiant but there is a look in his eye when he is these things, you can see it; you just know. But when he is just being Jake that look is gone, he honestly cannot follow directions; he hears one thing but his body is telling him another and the need to move outweighs what he hears.

Jake is a smart boy but it takes him much longer to process everything. For the typical person or child it is almost instantaneous. You ask a child to sit down and they will. For Jake it might take him a minute to process the instructions but he will follow the direction and sit down. When Jake is asked to complete a task he will but there is always a pause. Most of the time Jake isn’t trying to decide if he wants to do the particular task; he is processing the request, he is trying to understand. At times he is unable to process what is asked of him and when that happens you might see Jake run away, cry, spin, laugh or possibly have a meltdown. As his parent I try to look for signs that he doesn’t understand and because I am with him the most I can usually tell the difference from defiance and not understanding. For those that are not with Jake all of the time it is the most difficult and because he doesn’t have a physical disability most people assume he is not behaving.

April is Autism Awareness month and on April 2, 2014 it is World Autism Awareness day. If I can ask you to do one thing it would be to take a moment when you see a child that is like my son and give that child and the parent the benefit of the doubt. Know that the parent is probably doing all they can to help their child. Take a minute and smile at the parent, it really does help! A simple smile says ‘I am not judging you, I see you are struggling with your child and I get it’. As a mom of a child that is autistic it is harder than anyone can even imagine. My brain never shuts off, each word that comes out of my mouth is thought through. I have to think of how I say each word because they all matter; it is how I help Jake understand. The words I choose help Jake process a request and when out in public it just might keep him from having a horrific meltdown. A smile instead of a judgmental look calms me, it helps me help Jake.

HOPE — that is my word for the year. Merriam-Webster define’s hope: “to want something to happen or be true and think that it could happen or be true”. My HOPE is that Jake will continue to grow and one day be able to go to school, college, have a job and possibly a family. But first and foremost my HOPE is for Jake to be understood.

Autism awareness is very important to me and my family. If we can reach one person and help them understand this disorder a little better then we will be one step closer to helping Jake have a more productive life. I ask that you share my blog with your friends and family. Chances are someone they know has a child on the autism spectrum.

 

 

 

 

 

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Ouchie

One of the hardest things I encounter in this journey is the feeling of helplessness. This is where autism gets tricky. I know Jake, I know his moods. I know when he is happy, excited, sad, mad or even hurt. But what I don’t know is how to help him when he is hurting.

Last night (Wednesday) Jake was playing; running around like he usually does being silly, singing and jumping. He seemed perfectly fine. Then he sat down to eat his dinner and he said “ouchie” and pushed his food away which is something he never does. I asked him what was wrong, he cried and said ouch again. I tried to help him eat but he cried again. He ate a spoonful of his mac & cheese, some applesauce and yogurt and then he was all done. It was strange. He gets down from the table and cries saying ouch and then runs to the couch to lay down. I go to him and he says he needs to hide and puts a blanket over his head. I ask him what hurts and he cries and says “it’s okay, I’m fine” he puts his hand up as if to say ‘don’t touch me’. He gets up to play but immediately says ouch and lays back on the couch crying. I ask him if he can show me where his ouch is, he points to his face. I ask him if he has a loose tooth and he says no. I ask him if I can see in his mouth and he clamps down and shakes his head no. He cries out again as he lies on the couch. I know he is getting annoyed with me because I keep asking him questions trying to figure out what is hurting my boy. He runs from me, he hides in his closet, he hides under his weighted blanket all the while saying “owie, owie”. It is hard enough when you know what causes the pain in your child but at least you know what to do to help that pain; most of the time anyway. But when you see your child in pain and they cannot verbalize what is hurting yet they continue to cry and is not their usual bubbly self; it stinks! I gave him some Tylenol thinking maybe it would help whatever the pain is…maybe a headache or a toothache. He goes to bed falling asleep during our good-night songs. I get up to leave and he opens his eyes and says “stay” so I do. I sit with him until I know he is asleep. As the night goes on I find it hard to relax. I keep listening, my thoughts are on my boy, praying whatever the pain he is experiencing subsides and he can sleep peacefully. He does. He sleeps through the night. As I write this he is awake in his bed singing and playing. A truly beautiful and typical sound to hear in the morning.

Like all moms, I want to comfort, help heal, if I can, and protect my kids. I think most, if not all moms, want to be able to do this for their kids no matter the age. My older boys are 23 & 24 and even though they live on their own and have lives of their own; if they call me in distress I want to fix it. I want to make it better for them. It is hard when you can’t. It is hard when you have to sit back and the only comfort you can give them are your words whether they are spoken or not. I realize it is different with Jake; he is 5 and autistic and words don’t bring comfort to him they seem to make the situation worse. But the feelings are the same. I want to tend to him, make it all better and when I can’t it hurts.

Understanding Jake’s autism is a journey all its own. There is rarely a time when I think ‘I’ve got this’ because it is always changing. What worked the last time might not work this time. I am in constant thinking mode, trying to make the best decision, doing my best to interpret his wants and needs and so many times I am wrong. I find myself always anticipating the next reaction; what will make him happy or angry or sad. I know I can’t do this all of the time but when you never know what response you will get even from a simple ‘hello’ it makes our lives a little bit harder. This journey is not for the weak although I would have never said I would be one of the strong ones but this journey makes you stronger.

Owie’s not only hurt the little guy they hurt this mamma too!

Editors Note: Jake got out of bed and seems perfectly fine this morning. He is eating breakfast and is his usual happy self~thank God!

how can I help my boy?

When a child is diagnosed with any disability the first thing most parents want to know is what can we do to help our child. As a parent, I want to fix it; do anything possible to make things better, easier for him.

Jake was 15 months old. He wasn’t talking. I asked my pediatrician what I could do to help him. He said the typical response that many parents in my situation hear “well, he is a boy and boys talk later than girls”. I want to state that I absolutely love Jake’s pediatrician, I value his opinions and I truly trust him but this statement didn’t sit well with me. I wasn’t a new mom, I had 2 boys before Jake and by 15 months old they were talking in some form. I waited about a month to see if things would change; they didn’t so I contacted my state’s early intervention services. I wanted to have Jake evaluated, just to make sure everything was okay, although I knew deep down that it wasn’t. I didn’t realize at the time what a long road this would be for us. I still remember getting the full evaluation report. I read it over and over again; I was in shock. Although I knew something wasn’t quite right I didn’t know his delays were so extreme. My first question to my case worker was ‘how can I help Jake?’ Here we began this journey.

November 2010 we began our therapies. Jake received developmental therapy, speech therapy, occupational therapy, behavioral therapy (ABA) and eventually physical therapy. Because Jake was under the age of 3 the state paid for all of Jake’s therapies, thank God! At one point Jake was receiving over 15 hours of therapy in a week which was approximately $500/week in costs. Once Jake turned 3, paying for all of his therapies fell on us. Typical insurance doesn’t pay for many of these services therefore we had to find ways to pay for what he needed and it was a strain. Because Autism is listed as a disability Jake was eligible to receive our state’s insurance which pays for Jake’s speech, occupational and physical therapies; the cost is roughly about $1,000 per month. We are blessed that we have a way to pay for his much-needed therapy. But what insurance doesn’t pay for are the extra’s like equipment to help with Jake’s sensory needs or the therapy groups to build his language skills, improve his social skills or kindergarten readiness programs.

All of this can be truly overwhelming. Managing Jake’s schedule, figuring out who the best therapists are, finding the best support groups, arranging doctor’s visits etc. Not to mention trying to find funding to pay for all of the “extra” services Jake desperately needs. Having the additional insurance helps but because it doesn’t cover everything Jake needs I knew I needed to do something to not only help Jake but to help take some of the financial burden off of John.

In order to help with the additional funding of Jake’s therapies and needs, last year I decided to sell Pampered Chef. I am able to work from home, sell a product I love and make a little extra income. Most of my shows have been on-line and catalog shows which is convenient for the host as well as for myself.

This summer I am trying to line up some intense therapy for Jake. A large portion of his therapies are covered by Jake’s insurances but the additional therapy I want to add is not covered. I would like to ask you a favor. Would you consider hosting a Pampered Chef show?

Many of you have asked how you can help Jake. By hosting a Pampered Chef on-line/catalog show I receive 20% of the guest sales and all proceeds from these shows will go directly to funding Jake’s summer therapies.

Hosting an on-line or a catalog show is really easy for the host/hostess. I do most of the work and all you have to do is reach out to your friends and family. Being a host of an on-line or catalog show allows you to receive free rewards and you don’t have to clean your house 🙂

If you would be interested in hosting a Pampered Chef show let me know. I will be happy to share with you all of the perks to being a host/hostess. I am sure many of you have hosted some type of show in the past whether it be Pampered Chef, Mary Kay or even Tupperware. You probably loved all of the free products you received but maybe you didn’t really have the time to host a party in your home. That is one of the great things about my job, you don’t have to host an actual party, you can do it all on-line, share the catalogs with friends and family all the while I do most of the work. Also, you can live anywhere in the world and host a show for me; one of the great things about technology!

Thank you so much for considering to help Jake. Your prayers are always coveted and appreciated! I know we wouldn’t be where we are right now without all of your support and encouragement!

happy2013

Editor’s note: You can click on the links above to find out more about my business as well as the host rewards. You may also contact me at lauriedickan@gmail.com for more information.