glorious unfolding :)

There have been times throughout this journey where I’ve asked why? Why were we chosen to walk this path? Why was I chosen to be Jake’s mom? So many times I don’t feel capable of this task, so many times the frustration levels get so big that I have no clue how to move forward.

When I was pregnant I had all of these dreams, I tried to imagine what Jake would look like, what he would be like. I had the highest hopes and just wanted the very best for this child.

When we found out Jake was autistic all of my dreams stopped, any hope I had seemed to disappear and fear was at the forefront. BUT as we started taking our first steps some fears went away and HOPE began to move to the forefront of my thoughts.

I heard this song not to long ago and it really spoke to me. And many times when I feel at my lowest, the words of this song pop into my head to reassure me that Jake’s story is so far from over!!

Steven Curtis Chapman ~ Glorious Unfolding

“Lay your head down tonight
Take a rest from the fight
Don’t try to figure it out
Just listen to what I’m whispering to your heart
‘Cause I know this is not
Anything like you thought
The story of your life was gonna be
And it feels like the end has started closing in on you
But it’s just not true
There’s so much of the story that’s still yet to unfold

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding”

Here is the full music video of the song 🙂

http://www.youtube.com/watch?v=GKMjEvF2Fkw

 

HOPE!  Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you HOPE and a future.”

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Kindergarten…really?!?!

Here we are with one week until….KINDERGARTEN!!  OMGoodness where has the summer gone; much less the past five years?!?!? 

As nervous as I am about Jake entering Kindergarten I feel blessed that we are at an excellent school where they want him to succeed as much as I do! I have a great relationship with the administration and almost feel like Jake is the most important child at the school. When any parent feels this way it means the school is doing their job right.

This summer has been so much fun and Jake has worked hard!  Jake had a few free days a week where we played, swam and watched our best friend “Thomas”. We have also had our usual Speech, OT & PT. Jake was able to go to a language social group 2 days a week. There he learned the importance of sharing, using his words instead of crying and how to work alongside a peer. It is pretty neat to see the changes in Jake from May to the end of July.

Jake’s vocabulary has sky-rocketed. He is using more words every day, words we didn’t even know he knew! He will now ask for his wants versus crying where we have to decipher what he wants or needs. This is awesome in our day-to-day life, although now he knows the phrase “I want” and he wants everything he sees!! I now have to be so careful as to what I say because Jake has started repeating everything he hears. A few days ago I dropped something and said “dang it” and Jake walked around saying this as well as “what the heck”; something he picked up from his beloved Toy Story. I tell Jake “use nice words” and then he promptly tells me “what the heck is not nice” and repeats this throughout the day 🙂

This boy has grown not only physically but in maturity as well. He is following directions so much better and while we still have our “moments” he is learning how to find his calm. This is a big step! The other day he came to me and said “I think I need to be squeezed”. Squeezing Jake as hard as we can helps his body regulate and then he can hear our requests and he seems more calm. When Jake’s system is out on sync he seems hyper. He can’t sit down, follow requests and at times he is looking and seeking so hard for that “relief” that he can’t hear us at all. So it is awesome that Jake is seeing this himself at times and is asking for help!

Overall this summer, Jake has progressed more than I thought possible. There are days where he doesn’t seem like a baby but more like a little kid. Seeing the big boy come out more and more is truly wonderful!

The big question that I ask myself on a daily basis, Is Jake ready for Kindergarten? Academically I give a resounding YES! Behaviorally, I am not so sure!

One of the biggest obstacles with Jake starting Kindergarten are his behaviors. There are days where Jake can follow instructions, he is more compliant, he appears to hear better and the behavior’s expected from him appear to come easy. Then there are days where he seems distant, he doesn’t make good eye contact and appears as if he is not paying attention. He is easily distracted and he has a one-track mind, meaning Jake is going to do whatever Jake wants to do. What Jake does one day might be totally different from the next. What works one day might not work the very next day. There is constant juggling, constant thinking and figuring out what to do to help him each and every day. As each and every day are vastly different. It can be frustrating as a parent and I can’t even begin to imagine how difficult it is for a teacher.

The Kindergarten plan, for right now, is to let Jake show us what he can and cannot do. The first few weeks of school Jake will be closely monitored. He will be given to opportunity to stay with his Kindergarten class as long as he can and will have an aid to help him. During the times when the classroom seems too much for him he will be taken out and will do his school work in a quieter setting. Jake’s team will meet after a few weeks and revise his IEP (click the link to learn what an IEP is) and goals accordingly. This all sounds great on paper…but I can’t help but wonder how it will all really transpire.

The overall goal is to enable Jake to spend more and more time in a typical classroom and to wean the aid from him. This will all take a lot of time, possibly the entire Kindergarten year. There will be a lot of bumps along the way, there will be days of shouting “YAY” and other day’s there will be tears.

As I reread this my heart beats a little faster, my hands are a little more shaky and overall it makes me so anxious. There is no way to fully plan or fully know what will happen. We have to expect the unexpected. We have to open ourselves up to anything and be ready for anything thrown our way. Jake may do fabulously in Kindergarten or it might be a total flop at first. I just need to remember I cannot control every situation and I need to remember to trust others and let them help me and to help Jake to the best of their ability.  Easier said than done. But I remember one of my favorite verses —

Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

So I will be strong, be courageous and have faith that everything will work out according to God’s plan. That is all I have, that is all I can do. I can do my part in preparing and leave the rest up to Him.

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Don’t be afraid!

I started this blog for a few reasons; to document Jake’s life, to share our life with friends and family as well as those that are going through similar struggles and to bring awareness to autism. Being aware of what autism can look like is important especially now as we all probably know someone or know of someone who is on the spectrum. But there is something I need to say to those that no nothing of this disorder…

Please don’t be afraid!

Don’t be afraid of Jake or someone like Jake.

WebMD uses this definition of Autism:  Autism is a brain disorder that often makes it hard to communicate with and relate to others. With autism, the different areas of the brain fail to work together.

Autism is a processing disorder. Autism makes it harder to understand and process all kinds of things.

Because of the way an autistic persons brain works it is often hard for a person on the spectrum to see, feel or hear social cues. It is hard for an autistic person to understand certain things.

Don’t be afraid to approach a child on the spectrum as you would another child. The autistic child will usually let you know what they can or can’t tolerate.

Don’t be discouraged when you say “hi” and get no response. Don’t get upset or allow your feelings to be hurt.

Don’t be offended when you ask for a hug and you get no response. Don’t allow this to affect your relationship with a person on the spectrum.

Allow yourself to be open-minded. Allow yourself to be willing to talk and share with that person on the spectrum as you would with someone who isn’t on the spectrum. They hear you, it is just taking them a bit longer to process all that is being said.

A person on the autism spectrum most likely hears you, they most likely see you. So do your best to give this person the space they need to understand and eventually look at you or in your direction and respond to what you have just said.

But most of all, don’t be afraid of the unknown. Ask me and I’ll share with you my experience. Ask me anything you want if it helps you better understand this disorder. No question is off-limits.

It is a complicated disorder. No two people on the spectrum share the same “disabilities”.

What I experience might be totally different from another’s experience with autism. This is a fact and does not mean we are wrong, it does not mean that we are putting a “label” on our child for pure convenience of explaining why he does what he does.

Autism is a very broad spectrum. What Jake does versus what another autistic child does can look similar or totally different.

There are similar signs of autism; low to no eye contact, toe walking, not responding to their name, might not smile when you smile at them…the list goes on (click on the link to learn more).

If I could share with you one thing and one thing only it would be don’t be afraid!

My boy is just that, a boy. He is not unlike any other child, he needs love and compassion. He needs to be cared for and taught daily lessons. My boy loves and is loved. My boy is happy and wants others to be as happy as he is. My boy is rambunctious. My boy loves to be played with and enjoys talking about subjects that interest him. Currently we are back on Thomas the Train. He loves anything that moves whether it is a car, truck, train or airplane. He loves watching the wheels move slow and fast. In so many ways he is just like any other child.

The difference with Jake is he needs extra help and extra time to learn any new task. When I say the word any I mean any and everything that is new. It takes him a bit longer to process the request that is new to him. Sometimes there is ‘fright and flight’. He can’t understand the “new” and gets scared and runs away. This is something we are working on currently. How to deal with the “new” and how to use our words to express how we are feeling.

We have had to teach Jake what emotions are and what they look like. This doesn’t come to him naturally. We have to teach Jake how to express his emotions in the most appropriate manner.

Recently I posted on my Facebook page how Jake’s yogurt packaging changed. It was a minuet change, nothing huge but he saw it. He didn’t like it and cried, threw a fit and ran away saying his new yogurt was “scary”. Jake notices everything even as small as the change of the characters shirt on his favorite yogurt. I didn’t understand, I didn’t see it. I told him it was the same yogurt he always eats, I showed him the package that it comes in and he looked at it and cried. This is where it gets tricky with Jake. I don’t get it, I don’t understand how a small detail can change the whole experience for him. But I don’t have to understand it to help him learn and grow from this experience. I told him how he could tell me what was different, how he didn’t have to cry and run away screaming. Finally after about a week of him looking at this new container he was able to tell me that he wanted the one with Dora’s shirt (the one with the spoon) and not the new scary yogurt. Ahhhhh, the relief I felt. Although I don’t understand it all fully I was happy that he was finally able to tell me so I could understand a little better. I am sure the next change will be just as hard, but over time he will learn how to use his words to tell me what’s going on versus running away.

yogurt

This is a very small tidbit of what we go through with just about everything. From new clothes to new cups to even new decorations in his room. I do my best to understand how his brain works. I read as much material as I can to understand because by trying to understand I become more aware and can help him through whatever “new and scary” situation that arises.

We all have our own “ways” of doing things. Some might call it quirky while others think it is just dumb. But it is what it is and somethings we just can’t change fully. It is how we do things from cleaning to organizing or how we prepare our food. It is what makes us individuals, it’s what makes us unique.

We were not all created the same, God intended it to be that way. We are all diverse in our ways of doing things and the way our brain works. It is no different from Jake. One autism quote I like is “different not less”. Truth be told we are all different but not less. God created us in his own image so to ridicule or to be afraid of someone because they are different is just not right.

This boy is just that…just a boy. Yes, he needs some extra help but he loves and wants to be loved just like you or me 🙂

ipadfun

 

Editor’s note: If you have any questions or need assistance of any kind please feel free to reach out to me. You can find me on Facebook ~ Our Journey with Jake ~ or you can message me here.  Thank you for reading this important message from me and thank you to those that support us every day! We love you ❤

Pray, trust and let go!

In a few weeks Jake will start Kindergarten. As I write the word Kindergarten I take a big gulp and sigh a little. I can hardly believe he is old enough and that Kindergarten is actually going to be here! We have been working hard for the past 3 years for this; it just doesn’t seem real. Where has the time gone? Allie will be a junior in high school and our “baby” will be a kindergartener!

Jake has been at this same school since he turned 3, many know him and that part is easy! It is all of the other stuff that jumbles my brain.

It is hard when you are sending your typical child to school for the first time; you worry that they will behave, transition okay, follow the rules, make friends, play nice…basically do what they are supposed to do. It is even more difficult when you send a child like Jake to school as there are a lot more variables in which you have to think about. Here’s what is going through my head: Will he be able to follow simple instructions, will he be able to sit with his classmates at the appropriate times and act appropriately? Will he have meltdowns when he doesn’t understand what is asked of him and will there be someone there to help him work through those meltdowns? Will he be able to actually stay in a typical Kindergarten classroom or will he need to be put in resource more than in the classroom?

We are all about challenging Jake and helping him realize he can do much more than he thinks he can. But what we don’t want to see happen is it will be too much for Jake and it will set him up to fail. While failure isn’t the end of the world, and in my opinion we all need to fail at times so that we will try again and reach that success. But sometimes when a child like Jake is put in this position he doesn’t understand and it can make it much harder for him to try again. Because Autism is a processing disorder it can be difficult for Jake to process what is asked of him. He needs that extra time to grasp concepts, understand questions and to follow the rules of a classroom. There are times when he thinks he can’t do something, he will cry and melt-down when you ask him to try again. He doesn’t do this in all areas but sometimes when things are new they are “scary” to him and he doesn’t know how to react to the new “scary” situation or task. He runs away, cries, fights the task at hand and it takes a lot of mental strength to help him realize the “scary” isn’t so scary. It’s a balancing act at best.

There is so much to do to prepare Jake for Kindergarten. We have been talking a lot about it, reading social stories and he has been part of a social playgroup this summer. But first we will have a big IEP (Individualized Education Plan) meeting to go over what we want to see happen and the goals we want to see Jake reach. This is the hardest part and this is where we set Jake up for success or failure. It is a huge burden on me. And by burden I mean so much to consider, mentally time consuming…there is just a lot of reading and preparing I have to do to make sure his goals are going to challenge him as well as help him grow and learn. As his mom I want him to be loved, cared for and treated with the respect he deserves. But he needs to be challenged and have a strong teacher that can give him the tough love that he will need. Of course I want it to be perfect, smooth sailing with glorious reports from those that work with him that he is exceptional and wonderful etc. But reality is it’s going to be tough. I can’t make it perfect, all that I can do is prepare the best plan for him for right now and pray! The enormity of what I feel is huge and I don’t want to make a mistake. I want this to be the beginning of something great for Jake; I want it to be the foundation of great things to come. I want it to be a positive experience for him and me. And let’s be honest whether you have a child with special needs or a typical child we all want this for our kindergartener!

Some might want to tell me to relax and that it will be what it will be. But when you have so many options to consider and you have to juggle therapies in and out of school, school work and not to mention trying to stay on top of your 16-year-old girls schedule; it can be daunting! Allie will be a junior, she has a HUGE schedule this year which includes 3 AP classes as well as honors classes. She is running cross-country and has a job. There is also the social side of her life where she wants to hang out with friends, go to the movies, shop and all the stuff that comes with being 16. Let’s not even talk about how we will start looking at colleges this year ~ sigh! I think it would be interesting to hook me up to one of those machines to see my brain activity 🙂

So many things go through my head and, at times, it is too much for me to process. So many things to consider, so many things I want to make sure are covered, so many many decisions; it can be truly overwhelming!

But I am blessed to say the least. Jake is in an excellent school where I know whatever hiccups that come along the way will be worked out. Allie is a great student; she studies hard and for the most part a sweet girl (hey, she’s 16 ~ we all remember that age 😉 ).

At the end of the day I will pray, trust and let go!

But for right now I will sort “stuff” out, panic a little, be anxious, worry and maybe drink a glass of wine!

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See Miracles In Everyday Life :) (SMILE)

There are times when it all is just too much; I see it but am not sure others can. I watch Jake and see his head tilting, I see his eyes shift and he starts to bounce. He can’t stop; he runs, jumps and bounces some more. He finally falls to the floor and cries. He doesn’t want to be touched, he scrambles to run away but (for now) I am bigger than he is and I catch him. I pick him up as best as I can and squeeze him tight. He squirms and fights it; he wants to get away. He screams again to let him ‘get out of here’ but I hold on for dear life. We sit in the floor of his room, I squish him as hard as I can and pray God will give me the strength to hug him tighter. His eyes close and I can feel the relief flow through his tight, wound-up body. He opens his eyes and smiles at me. I say “better” and he smiles again and says “better”. Then he runs off to play.

The other day Jake was bouncing and spinning (literally) out of control. He stopped and looked at me and said “calm down Jakey, take a deep breath.” He took a few calming breaths and looked at me with tears in his eyes. I squeezed him as hard as I possibly could. I told him how proud I was of him for trying to find his calm on his own. He still needed help but oh my God, he was trying to help himself! I thanked God and hugged my boy even tighter and told him how proud I was of him. The tears were still in his eyes but he smiled; this smile is one like no other. It is that of pride. He wants us to be proud of him and he wants to be proud of himself too.

One comment I hear the most about Jake is how happy he is; either people are surprised or maybe they wonder why he is always happy. He almost always has a huge smile on his face, he is almost always laughing or giggling. I have my thoughts as to why the boy is always happy…he knows he is loved. He knows he is safe. He knows that we are proud of him. It is unusual to see Jake without a smile; I really believe God gave him this smile to draw others closer to him. He does. It always amazes me how strangers will come up to us and say “he is the happiest boy I’ve ever seen” or teachers or parents will say how they want to just hug him because he is so happy.

I’ve talked about Jake’s infectious smile before and I am sure others think it is just me being his mom and all moms love their child’s smile. But there is a light that shines from his eyes. Jake shines when he smiles and his smile is truly irresistible! You see him smile and you find yourself watching him and smiling right along. No matter what is going on with me all it takes is one look from Jake and I find myself smiling.

I saw an anonymous quote the other day and it said See Miracles In Everyday Life — SMILE! I loved this because, for me, if I look for those miracles they are there right before my eyes. Sometimes they are big and I can see them clearly while other times I have to squint to find them; but nonetheless they are there. And they always result in a smile! This boy I have has made me look for the tiniest miracles! And if I have learned anything from Jake and Autism it is to look at things a little more closely, enjoy each and every victory, work on each and every challenge. At the end of the day when I think about the “happenings” of that day it usually brings a smile to my own face.

Life on the autism spectrum is not easy, it is downright challenging at best. But it’s what I do with those challenges. Jake has taught me to work through the toughest challenges, embrace them and when we (he) conquers the challenge at hand there is always that contagious smile!

Smile