hope is my anchor

Jake has been in school for 10 weeks and I don’t think there has been a day where he hasn’t amazed any of us!

I shouldn’t be surprised by what this boy knows or by what he can do. There aren’t many days where I don’t think “wow that is huge! How does the know that?”

Jake has only been independently verbal (my word) for about 6 months. Meaning, he can now choose his own words and have short conversations without prompting. Sitting around the dinner table is when he talks to us the most. We will ask him questions about his day and he can reply with words of his choosing. Sometimes it takes him a while to find the words but if we are patient and wait for him to figure out what he is trying to say it is nothing short of astonishing.

Last week Jake brought home his first report card. He has no idea what a report card is so when I looked it over, explained to him what is was and told him how proud I was of him, he didn’t seem fazed. He just looked at me and continued playing. I read to him the different items on the card telling him how well he did. He didn’t react; it was as if I wasn’t even talking to him. I hung his report card on the refrigerator. The other day he was playing in the kitchen and he saw his report card and asked me “what is that?” I told him that was his report card. He looked it over, reading almost every word and said “Jakey got a lot of M’s and S’s”. I said “you sure did, buddy. That means you mastered every goal for your first 9 weeks of school and the S’s mean you did everything you were supposed to do!” By the look on Jake’s face one might think he didn’t understand. He looked at it one more time and ran off to play. On Saturday Jake was staring at his report card again and we repeated the conversation from a few days before. I got the same response from him. Someone who doesn’t know Jake might think that he doesn’t grasp what we are trying to say. When, in fact, he does! He gets it but is processing the information. It takes time for him to understand completely. It takes a lot of talking things out for him to be able to show us that he understands. 

Sometimes being patient with Jake is hard! We want to finish his sentences or show him the answer. But if given time, he will say what he wants to say and get to the answer on his own. For years we have repeated everything, saying the same thing over and over again. Sometimes it is for his reassurance but most of the time Jake needs these extra words from us and the extra time for him to process all of the information. But once the boy knows it he never forgets!

The first few weeks of school were a little rocky. Jake started kindergarten, he had a whole new staff working with him and he had an entirely new routine. Jake struggled and I had to wonder if he was going to be okay. During the first few weeks of school I wasn’t sure if we had made the right decision sending him on to kindergarten. As his mom I wanted to protect him, keep him safe but more importantly I wanted him to feel safe.

Then Jake changed kindergarten classrooms and I thought this is it; here is where his teachers will see his full-blown meltdown as well as see the “real” Jake. But there were no huge meltdowns. Jake showed everyone, including me, that he was up for the challenge. His new kindergarten teacher welcomed him and made him feel like he was a part of the class. She included him every part of the kindergarten day. Every day for the first 9 weeks his aid, kindergarten teacher and resource teacher would tell me he had a great day with minimal behaviors. I shouldn’t have been surprised but I was. I found myself waiting, each and every day, for the other shoe to drop. I waited for the phone call, the note home or the handwritten report telling me Jake was having a hard time, his behaviors were hard to manage or the worst… he can’t be in a typical classroom.

I sometimes wonder if I don’t have enough faith in my boy. Do I expect the worst when I should be expecting success? And I ask myself ‘why are you surprised? You know your baby and you know what he is capable of doing!’

Hope is my anchor. The bible tells us in  1 Corinthians 13:13 that there is faith, hope and love and the greatest of these is love! For me, without faith, hope or love I wouldn’t be able to be the mother that my kids need. 

My love for Jake is truly unconditional. I have hope for Jake’s future. I have faith in Jake. I know he can do anything that is presented to him and I know he is capable of far more things than I can even imagine. I know I need to let things go, Jake will be fine and I will be fine. But it is hard. You know when you are used to things being a certain way then when they almost suddenly change and you find yourself kind of waiting for the bad to happen. That is where I’ve been. Just waiting. Fortunately the “bad” has not happened and Jake is showing everyone he is able to do most things with no problems. 

I am really proud of Jake, I mean really really proud! He is one of those kids that tries his best. And when given the opportunity to process all of the information before him he excels. He can shine like nothing you’ve ever seen before. He knows things and I have no idea how he learned them. His behaviors are so minimal that his aid is nearby waiting to assist him but does not need to be hands on all of the time.

Jake’s report card does reflect the “real” Jake. He really does love learning, he loves being with other kids and loves loves loves being more independent.

No more waiting for this mom! I will start accepting each day for what it brings, revelling in the glorious reports and shining with pride! When the “bad” days come; it will be okay. We all have our own bad days. I will get through it and wake up ready for the next day with no expectations, just taking it one day at a time. 

 

1st Kindergarten Report Card!!
1st Kindergarten Report Card!!

 

 

“we have this hope as an anchor for the soul, firm and secure…” Hebrews 6:19

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always looking for that happy face :)

We start each day with hopes of it being a “good” day; prayers of happy and easy. But before I know it; the messiness starts.

Jake always, unless he is sick, wakes with a huge smile. He is happy and ready to bound out of bed to start his day. If it is a school day he will say “kindergarten today!!” and then he will look at the calendar and tell me what day of the week it is and the date. He loves calendars! He runs down the hall and usually says a good morning to dad and then he wants some milk and cereal. His favorite right now is cinnamon Chex. Then happily he picks a movie or a show he wants to watch and starts playing. It is the same thing almost every day. He thrives on the sameness; it makes him happy.

But then it gets tough. A toy is missing, the iPad won’t work the way he wants it too or he doesn’t want to stop playing to get ready for school. I provide him warnings when I can; “5 minutes then we need to get ready for kindergarten!” I look for the toy and fix the IPad and remind Jake there are only 3 minutes left until we need to get ready. He screams and runs away. He laughs, he is defiant and there is a lot of stimming. There is a fine line between him being a “typical” kid that is being defiant and the kid that is having trouble processing. At times it is a little bit of both.

Jake cannot process why his toy is missing. He cries because I can’t get his IPad to work. He screams because he doesn’t want to stop playing. He wants to go to school but doesn’t want to be bothered with me touching him and helping him get dressed. We work on our feelings each day. I try new “tricks” to help him adjust and cope with sudden things that have no warnings. I am still working on this and have not found the perfect solution because, well…the perfect solution changes from day-to-day. What works today will probably not work tomorrow.

I try not to threaten him with a time-out or losing his favorite item. These things don’t work. He cries and screams with the thought of being punished. But it isn’t because of the actual punishment per say. He cries and screams because it will interrupt his routine; his sameness. Visual discipline works best with him; he can see it and he can process the discipline. For instance, in his kindergarten class they move clips. Each day your clip starts in the middle. If you make a good choice you move your clip up if you make a not so good choice you move your clip down. Moving your clip down is not something Jake wants to see. For Jake this means he won’t be praised, he won’t see a smile but will see cross expression or a sad face. This is what works for him. He wants to see the happy face, he wants to hear the praise and it is much more than a want; he needs this. Smiles are something he can process. Praise makes him feel good and affirms that he is doing well. A cross look or a sad face is a little more difficult for him. He can process these expressions but he doesn’t know what or how to feel about them. Meaning he breaks down and cries and begs and pleads “no cross face; be happy!!”

BUT and this is a huge BUT…he knows in order to see that happy face he has to make a good choice! He knows this and because the sad or cross face is so detrimental to him he will make those good choices more times than not.

When we first started therapy at 18 months old Jake loved to be praised. He loved the cheering when he did something “good” or completed a task well. Once Jake could talk if he did something appropriate and we didn’t cheer he would look at us and say “yay, Jake”. I don’t know many of us that don’t want to be cheered on and praised when we make a good choice. But this is something Jake thrives on, he needs it not so much for his ego but more importantly he needs it because he understands it. He understands that when he gets a smile or a cheer he made the right choice and for him that gives him a peace that goes along with his autism. Meaning, it is the result of a task, tasks for Jake MUST end in a cheer or he can’t move on to the next task. It is that sameness that he needs to move forward.

For those that face these obstacles and have no idea what to do; first figure out how your child learns. Is your child a visual learner or do simple words work best. Start there. For the kids that need the visual images to process different areas, create a visual schedule or use visuals to help that child cope with the words you are saying. Even if your child is able to process words, having a visual to back you up is comforting to your child. I am working on a new visual schedule as well as using to pictures and items around the house to help him process different occurrences of the day. One thing I will do differently is I will switch things up every now and then. For example; Jake gets up has milk and cereal then later has an egg or whatever he wants then we play for a bit, go potty, get dressed and leave for school. I am going to start with playing after we are dressed. It might make my morning run a little smoother and teach him that sometimes it’s okay to get dressed first then play. I feel that if I make the smallest change eventually the bigger changes won’t be so hard.

I’ll be honest with you, just the mere thought of changing our routine raises my anxiety levels. I keep things the same mostly so our mornings run a bit smoother and it makes things much easier. But what I need to think about is what if one morning we don’t have the chance to play because we are running late? We will be even later because of the meltdown that will surely come when that “normal” routine is changed. I guess, for me, I need to change-up our routines in order to make it easier on days where I have no control over what happens next.

The sameness Jake seeks cannot always be given to him. So the question I often ask myself is ‘how can I help Jake see that some changes are okay?’ It is difficult. But one thing I have learned over the course of the years is to make sure I am up for whatever occurs as a result of my throwing a wrench into the schedule. I have to make sure I am mentally and emotionally prepared and able to fight the good fight.

I know that at the end of this precarious road we will all be happier and more prepared for the next part of this journey. Hope that one day I will look back and smile because we overcame the challenges and were better for the experiences we faced.

 

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Jeremiah 29:11 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.

 

 

 

time, patience & understanding

The week started off with thoughts of a play date, going to the store to buy a fun toy to play with over the week, fun outings and more. But when I found out my mother had been admitted to the hospital all of that changed. I needed to check on my mom and John was able to stay home with Jake. That is not routine. Daddy goes to work and mommy takes care of Jake; this is what he told me one night. I said “that’s right baby, daddy works so we can have fun!” Because I was out-of-pocket, Allie was in New York and there was no school; Jake’s schedule was thrown for a loop. His “normal” was gone. Jake loves spending time with his daddy; daddy is fun, silly and takes great care of Jake. But each time Jake knew I was leaving he had to be reassured many many times that I would be back. “You’re coming back, right?” he said. “Yes, baby. I’ll be back soon”. “Daddy will take care of me?”; “Yes, buddy. Daddy will take care of you.”  This went on the entire time I was getting ready to go. Jake didn’t cry; he didn’t melt down; he just needed that added reassurance that I would be back for him.

The only changes I saw from Jake were his behaviors. John can be less strict with him. Don’t get me wrong; John knows what to do and at times can be harder on Jake than I tend to be. But typically I discipline, I work with Jake and John gets to be the fun one. But when those roles are reversed it throws Jake off and the only thing he knows to do is question and test the “new” authority. But don’t all kids. The only difference is Jake has a hard time understanding, he has a difficult time switching gears and it takes a lot of patience and a lot of words to get him to the place where he understands.

Early in the week Jake was playing when he suddenly stopped and asked “Where is sissy?” This was a first for Jake. He has never asked where someone is, we tell him but it seems when that person is out of sight they are out of mind. He knew Sissy was in NY for the week; Allie, John and I all told him. I had shown him on the calendar when Sissy would be home. To hear him ask where his sister was, well it took my breath away! John and I smiled at each other knowing this was a really big moment. We knew Jake knew but for him to ask for that added reassurance meant he could now form his thoughts into words.

We’ve often wondered what was going through Jake’s mind; did he understand when we told him sissy was gone? Did he know that she wasn’t home? We thought he did but we also thought that maybe he didn’t want to acknowledge it or didn’t have the vocabulary to express himself. Both of which are probably true. But I am so thankful Jake is finding the words to voice his own feelings, to ask his own questions and is able to express himself in a more appropriate manner. This is a really big transformation.

This kid doesn’t miss a thing. We think he isn’t paying attention but he listens. We think he is caught up in his own world but he isn’t; he is processing what he hears and sees and in his own time he is able to express himself.

Jake is able to read  close to a 3rd grade level. He is able to comprehend what he reads and it is mystifying to say at best. Just the other day we were reading ‘The Magic Tree House’ and I asked him questions to make sure he was understanding the book. Some answers came quickly while others took time. He would reread or find the answer by himself and point out the answer in the book. He knew where to find the answer but had great difficulty verbalizing the answer. But he found a way to answer; he found a way that worked best for him at that point and time!

When Jake is given the time to process, when he is given the room to think and express himself; he is amazing! That is all it takes! A little time, patience and understanding. Jake learns best this way. He learns best if we repeat things several times, give him the space to process these thoughts and give him our patience to wait and see what he does with that information.

What I am most passionate about is for others to meet Jake where he is. Teach him how he learns not how we think he should be taught to learn.

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what do you see?

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When you look at this boy; what do you see?

Is it his smile?

Is it his missing tooth?

Do you see the braces on his legs?

How about the awkward way his hands are by his side?

Do you hear his infectious laugh?

Can you hear the tone of what he is saying?

Are you aware of the presence of this kid or are you annoyed at his constant talking and humming and movement?

Jake’s presence cannot be missed.

Jake loves other people and has become quite social during the past 6 months. Now that he is aware of his surroundings he enjoys watching and even trying to imitate certain behaviors and things they say. Some behaviors are good and some not so good – ha!

Jake watches you and is listening; he can hear everything you say. You may think he is too absorbed in his movie, iPad or the toy he is playing with but he is really multi-tasking. Just the other day we were coming home from school, Jake was reading a new book he checked out from the library and Allie was telling me a story about someone. She said the word birthday and without looking away from his book Jake said “today was “Cindy’s” birthday”. Allie and I looked at each other and smiled. I asked “did you sing happy birthday to her?” Jake responded “no, my teacher did.”

Jake notices the world around him now; he sees horses, he sees the sun, the grass and he sees other people. He also notices facial expressions (something we have been working on for years). He knows when someone is sad, happy or mad. It won’t be long until he notices the differences about himself. It won’t be long before the questions start coming as to why he does what he does or why he wears the braces or why he has trouble sitting still. It won’t be long but I guarantee you he will notice these things before I know he sees them.

What I will tell Jake when the time comes is that ‘you are you’. Nobody is the same and everyone is unique. I will tell my boy about his autism and I will be forthcoming and truthful. I will tell him I believe it is a gift and it is what makes Jake, Jake.

I cannot imagine Jake not being autistic and truthfully I have wondered and tried to imagine how things would be different. Our lives might be easier in some aspects but would he have the same strong personality? Would he be as happy and always smiling? I don’t know and that is where I stop. Jake is who he is because Jake is who God intended him to be. Having an autistic child is challenging at best but it also allows us to stop and take notice of the smallest of things that we might not have noticed otherwise.

When you stop and take notice of Jake and really look at him and what he is saying, doing or accomplishing; it is truly magical!

I’ve learned to stop and take notice of others. I try to look beyond any physical impairment; I try to notice their inner beauty. It is not always easy but Jake has helped me see there is more to others than just their outward appearance. I’ve judged others, I’ve gotten annoyed by a crying child and sometimes I still do but I try to take a second and ask myself how do others feel when they see or hear Jake?

What do others see when they look at my boy? I notice the stares, I notice the whispers, and I see the facial expressions and the shaking of the head when Jake is melting down. I also notice the smiles, I hear the whispers of encouragement and the facial expressions these strangers have of compassion and possibly understanding.

We are all individual’s with our own way of thinking and doing things. We are all unique in our own ways. Jake’s uniqueness is more evident than others but that is okay. One of the things that has been placed on my heart recently is that he is different, he is special and I can draw out the exceptional and noteworthy gifts.

When Jake shine’s you will see that he is:

Always Unique Totally Intelligent Sometimes Mysterious — that’s AUTISM!

 

 

 

drseuss