the journey continues

I’m happy to say that things have been going pretty well over here. Jake has finished his first 9 weeks of 3rd grade and did well. Third grade has been a little challenging, academically. It’s been an adjustment for us having two teachers, harder assignments where things don’t come as easy to him and having to actually study for quizzes and tests. Grades don’t mean much to Jake, he knows that 100 is good and a 69 isn’t but that’s about all he knows from what I can tell. If he sees he failed a test or a quiz he might make a sad face but overall, it doesn’t upset him. He wants to do his best but helping him understand the grading system and the importance of it has been challenging. Jake seems to excel in science and social studies, math is coming along but language arts is proving to be harder for him. He has to critically think; something he hasn’t really had to do before. Answers just don’t come to him in this area, taking time to think things through isn’t something that comes naturally. For typical kids this can be hard but when you have a processing disorder like autism it can be extremely difficult getting the thought from his brain to pencil and then to paper. But I have to say he is doing better; I am already seeing critical thinking play a part in other areas.

One thing we’ve seen in Jake is his ability to be more flexible. This is a really big concept for him to understand and something we’ve been working on for a couple of years now; to see him trying to be more flexible is really neat and rewarding. Over the past several months John’s family, from NY, have come down to visit and stay here with us. Jake’s routine has been disrupted and he has had to be more flexible with a variety of things and he is learning to how to cope much better. 

Social skills play a huge part in all of this. One thing I’ve learned from having Jake attend his weekly social skills group is how much it helps everything come together. I used to think social skills was just interacting with others but it really isn’t just that. It helps Jake learn how to critically think. It helps him to stop, look and listen to what is going on around him and helps him process it all a little better. Social skills teach him how to be more flexible, how to engage in his environment and is helping him to be more versatile. Social skills have helped to teach Jake how to manage his emotions when things get hard and gives him the tools to find his calm and move past those difficult situations.

All of this to say, Jake is doing great and we are all so proud of this kid. His conversational skills have improved over the past few months. To hear him talk to his sister, aunts and uncles has made my heart smile so big! Jake talks to John and me but we are around him the majority of the time. To hear him hold conversations with others is really exciting! Allie recently moved out, she’s renting a house close to campus, and hasn’t seen much of this side of Jake. Yesterday she stopped by to drop off some things and Jake walked up to her as asked her what she doing. Sounds small and insignificant but it wasn’t and isn’t. He is verbalizing what he is seeing and asking questions without being prompted. Love seeing this side of Jake!

Life with autism isn’t easy, by a long shot. We have our daily struggles with food, behaviors and a variety of other things that I’ll focus on more in the coming weeks. Just because something works today doesn’t mean it will work tomorrow. We’ve been on this journey for 6 1/2 years and although some things have gotten easier there is always a new “thing” that leaves me scratching my head.

This boy makes everything worthwhile though!


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It’s nice to take a break…

It’s been a while since I’ve posted an update; just thought I would take some time off. Jake’s been doing great! We had a great summer with lots of swimming and a little bit of therapy. It was really nice and relaxing!

One of the best things that Jake has learned over the summer is how to dress himself with no help from me! Oh my, how I’ve waited for this day! Up until about 4 weeks ago I had to help him with his clothes. I was getting frustrated thinking, he’s 8 he should be able to do this now. But like everything else it takes time. One day after swimming I told him we needed to get changed and he said “I think I can do it by myself”. He ran upstairs and was up there about 20 minutes. The look on his face when he came out of his room was priceless…he yells “I DID IT!!!”. This was HUGE!! We’ve been working on this skill since he was 3; that’s 5 years! It is SO nice for him to be able to dress himself! Now I can send him upstairs and in about 5 minutes he’s dressed and ready for school!

Jake also learned to swim! He was very reluctant at first and I didn’t think he would do it this year. We took swim lessons at the beginning of summer and let’s just say it was trying for his swim instructor. She showed him the basics but he wouldn’t really even try with her. When we would go swimming Jake wouldn’t put his face in the water, he cried when I tried to help him swim and wouldn’t jump in the pool. About two weeks after his lessons he started working on his own and then overnight, he was swimming, going under water and jumping in the pool. 

Jake started 3rd grade two weeks ago and for the most part it’s been going well. He’s had to adjust to a lot of changes which has been the hardest part for him (and me). Going from the lazy days of summer to a stricter routine and then having two teachers instead of one as well as getting to know new kids in his class, is a lot for Jake. In my opinion, the hardest part of the new school year is more is expected from him. He’s older now and as many of us know or may remember third grade is difficult for most any child and having autism makes things a bit more difficult. But Jake’s learning the new rules, mostly the hard way. He has learned not to write that his teacher is mean, not to cheat on a test, not to yell no to his teacher and is learning how to work with a team. He’s adjusting as best he can but it’s a struggle. It’s been a struggle for me as well, I pray every day that he is a good listener and is following the rules. We are fortunate to have two outstanding teachers this year that are challenging him and working with him to find his strengths and help him with the areas of weakness. I really do believe it will be a great year for our boy!

Currently, Jake is interested  in logos for things like NBC and comparing them to their original logo and telling me how and when it originated and then showing me what the logo looks like today. I honestly never cared and never thought about different television logos or movie logos or toy logos but now I find it interesting. The best part is Jake is initiating conversations. He has found something he enjoys researching and wants to share it with me. And I love this!!

We’ve walked this autism journey for a little over 6 years now. The biggest and smallest tasks take a lot of time. Much of the time I want to rush it but it always backfires on me when I do this with him! As he gets older things change and I am constantly trying to figure what will work this time to help things click. I can go from feeling overwhelmed, frustrated and angry to feeling great pride all within a minute, at times. But it’s all worth it to see him succeed! And he’s doing just that. He’s growing and learning and talking with us more and more each day. 

 

Summer Fun

 

2nd grade wrap-up

It is hard to believe Jake has only a week left in the 2nd grade! In some ways it feels like this school year has been long but mostly it feels like it flew by.

Jake has an amazing teacher and advancing to 3rd grade is very bittersweet! The first day we met Mrs. Hansen, Jake was drawn to her and responded to her quickly. She wasn’t all gushy and sweet and over-the-top nice. That sounds a little strange, but Jake doesn’t need that or want that all the time especially meeting someone for the first time. She was extremely nice and kind but her tone let Jake know she was his teacher and he would follow her rules. He quickly fell in love with her; wanting to make her proud and to show her he could do anything she asked of him. Jake had some rough days but overall he has absolutely loved being in her classroom and told me just a couple of nights ago that he wanted Mrs. Hansen to be his teacher forever. That says something about a teacher when you’re child doesn’t want to leave their classroom.

 

 

One of the things I love the most about Jake’s teacher is she not only teaches the required subjects but also teaches respect for others, kindness and the inclusion of others. And in return, from what I’ve seen when I’ve been in the classroom, the kids show her as well as their classmate’s kindness, respect and are always including each other in different activities. As a mom of a child who is autistic this means so much! I know this is only 2nd grade but this is where and when our kids learn this stuff and hopefully take that with them as they go through life. Jake has always been welcomed and cheered on and made to feel important by his peers. Even when Jake is having a rough time I have heard encouragement from his friends trying to help him get back on track.

 

 

Jake loves being a part of his classroom and doing what the other kids are doing as well! Last week the 2nd graders had their spring musical where they had to dress up as a classic storybook character. We chose Tom Sawyer. At first, Jake wasn’t sure about this as he isn’t a fan of wearing anything except his normal clothes. But he wanted to do it! He asked me several times if he wore his costume would he would still be Jake? He wanted to make sure people wouldn’t forget he was Jake; this made me smile! He wore his costume with pride and I have to say he was such a cute Tom Sawyer!! He put aside his anxiety and for this kid, that is HUGE!!

 

 

The progress we’ve seen with Jake this year has been fantastic! He has learned to speak up for himself, he’s become much more independent and able to initiate small conversations with us at home. One of the best things I’ve personally seen is his ability to carry information that he has learned during the school day over to home. Most of the time what he learns at school, stays at school. And what he learns at home, stays at home. But I’m seeing that he is able to make the connection now and do the things he is able to do at school at home and vice versa. He will also remember things Mrs. Hansen wants him to tell me and many times he will make me repeat to him what he said so he knows I get it (something we do with him all the time). Jake is also learning to be proud of himself and his accomplishments. He may have always been proud but hearing him verbalize it is so cool! Recently we were talking and I asked him “Who is proud of you?” and he said “Mommy, Daddy, Sissy and Mrs. Hansen!” I asked him “Who else is proud of Jake?” He thought for a moment and said with a huge smile “I’m proud of Jake! I am proud of me!”

 

 

autism acceptance

April 2nd is National Autism Awareness day. It is neat to see that in the short time we have been on this journey how many people now know what autism is or at least some form of the definition. When Jake was first diagnosed, nearly 6 years ago, I had to try to explain what autism was to us. Being new, I had a hard time. I don’t have to explain it very often anymore which is awesome! Accepting someone with autism is great but being aware is even better, in my opinion. When you are aware then you are more likely to accept. Autism is a large part of our lives and knowing that because of days like today, Jake can be Jake and others get it 🙂

For the past week or so I’ve talked to Jake about autism and what it means to us; to him. It is hard to explain to a child who has difficulty processing information. I really want to make sure I use the best words so he understands, words that don’t scare him or make him self-conscience which could lead to insecurity. Anyway, it is not easy. Over time he will understand more and more, it is just a slow process that we will talk about for a long time until I feel he fully understands.

The color chosen for autism awareness day is blue. Everyone is supposed to “light it up blue” and wear blue to show their support. I think it’s great but having a child on the spectrum who doesn’t fully understand the “rules” wants to wear red because that is his favorite color. Jake will wear blue, in fact, he has a lot of blue in his closet but when I was showing him the shirt he was going to wear he said he had to wear red. I asked him why and without missing a beat he tells me “I like red and that is my color” he walks away; end of discussion.

I think it is so awesome that the school district we live in recognizes the special needs community and does their part to raise awareness not only for autism but for other disabilities as well! Tomorrow, Jake’s school will be wearing blue to show their support, raising awareness and acceptance to those who are autistic. I love it! If you see Jake tomorrow, he will be wearing his red shirt and probably smiling! There is a meme that says Autism; Always Unique Totally Interesting Sometimes Mysterious. That’s my boy and I love it!!

 

 

 

 

things are starting to click

This year has been different for us. I know it is the beginning of March but I feel as if we’ve been in 2017 a lot longer! We’ve seen a lot of changes in Jake. He recently turned 8 and we’ve had just as many birthdays, Valentine’s and Christmas’s. But this year it is as if he is experiencing them for the first time. We have our traditions and do the same thing each year because that is how Jake likes it; change is not good in the Dickan household. 

This past Christmas Jake loved the decorations. He was super excited to get our tree and looked in awe each time a new present appeared under the tree. When he would find one with his name on it, he would look at me with this quizzical look and ask “is this for me?” I would tell him it was because it had his name on it; he would stare in a little bit of confusion and then it would turn to excitement. I asked him if he remembered getting gifts before at Christmas and he said he did. I couldn’t help but wonder if he just went through the motions, not understanding. On Christmas morning he was excited to see what Santa brought and to open his gifts. With each gift he was thrilled, like most kids, but there was something different. It was as if this was his first Christmas. You know the ones where our kids finally “get it”. 

The same thing happened on his birthday. He saw his presents and kept asking if they were for him. Valentine’s day I had a card for him and he looked at it and again asking “Is this for Jake?” (he often talks in the third person), I asked him if it had his name on it and he said it did and then asked “why are you giving me a card?”.  I said “It’s for Valentine’s day and I love you!” He smiled and said “cool!”.  Everything seemed new to him. I asked if he remembered past birthday’s and Valentine’s days and gifts and he just smiled. I’ve tried to get more out of him to no avail. 

In a way, it is all so strange to me. How can we do the same thing for 8 years and then all of a sudden it is brand new? Autism. Although, we have been on this journey for 6 years we are all still learning. I just scratch my head, try to keep up and understand to my best ability. It is hard and frustrating most every day. But thankfully Jake is happy. I wouldn’t change who Jake is but I sure would love to get inside his sweet head and know what he is thinking, why he is thinking it and to see the gaps that keep him from being able to tell me these things. One day…

 

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5 Great Years!

It dawned on me the other day that February 5th will mark our 5-year anniversary at Jake’s school! FIVE YEARS!!! Wow, I keep saying this number over in my head and I can’t believe it has been that long, or short, of a time. We all have watched Jake blossom and become a more independent kid and able to do so many things we had only hoped he would do. It is the coolest thing to see our hopes and dreams open up before us and it’s even better than anything we could have imagined!

Jake had turned 3 on February 4, 2012 and was discharged from the early intervention service in my state that same day. The minute the child turns three they are “handed” over to the school system. That was probably one of the scariest days of my life! I had been with Jake every day, monitoring his therapies, tracking his progression and regressions. Keeping constant tabs on his developmental growth and in just one day I was to hand my son over to strangers and have them take care of him in a school setting. Jake would have therapists at school, aides and a teacher and they would all work with him while I was on the outside looking in, so to speak. I was involved but I had to let go a little and trust. Scary!

I remember getting a call from the preschool teacher a few days before Jake was to start school. She asked if I had any questions and I laughed. I knew this school very well; Allie went there from 2nd-5th grade. I knew many of the staff but knew nothing of the special needs program. Boy, did I have questions for her. She was calm and sweet and promised she would keep me in the loop. I remember walking Jake to his classroom that first day; Jake’s sweet teacher was waiting for us, and I was shaking. Jake seemed oblivious to everything but had a huge smile on his face. I talked with his teacher for a few minutes, I watched Jake as he started playing with all the new toys and I left. In the beginning, Jake was in school from 9-12. I remember that first day being the longest 3 hours of my life. Fortunately, all my worries were replaced with trust and confidence in this team that would be working with Jake. He has loved his school from that first minute until now. Everything has worked out better than I could have ever dreamed. God has a way of taking care of my boy and me!

Since preschool we have been blessed with the teachers, resource teachers and therapists for Jake. Each of these women hold a very special place in my heart. Each person has been different but each one has challenged Jake a little more, loved him along the way and has given him the tools he needs to succeed for the next year. I could write a book about these wonderful people who have touched not only Jake’s life but mine. Each year I am a nervous wreck; praying and hoping that this will be a great year and Jake will have a connection with the new teacher that was picked out for him. I don’t think that will ever change but one thing is for certain; I trust the principal’s that place Jake with a teacher that they believe is a good fit. Jake is well taken care of and because of all these things; I know he will continue to thrive.

Here we are, nearly 5 years later, and this baby is a big kid now. Jake is meeting goals and progressing in a way I had only dreamed he would. Jake’s entire IEP team cheers him on, watches him to ensure he is advancing while working on behaviors that need attention and making sure he is challenged each and every day! Most of the staff at the school seems to know Jake. When they see him they always smile, give him a high-five and are always encouraging him to be his best! Jake has had his setbacks; we have had concerns and it hasn’t been a perfect 5 years BUT I wouldn’t trade these years for anything.

Like Jake, I have grown a lot in these past five years. I have learned to let go a little and to trust the people working with Jake. I love it when I get an email, a text or one of his people come to me to tell me the awesome thing Jake did that day. I have learned to challenge Jake more. I am learning to push my anxieties aside and let Jake show me what he can do. This letting go and letting someone else take over has been the hardest part of sending Jake to school but I know, beyond a shadow of a doubt, that this was and is in Jake’s best interest.

Jake’s school isn’t about making Jake fit in and adapt to what other kids are able to do. They meet Jake where he is, encourage him and help him to become the best that he can be. I love that they look at Jake as an individual and not just another child with special needs. He is important to the staff and I feel they want to see him succeed almost as much as I do.

Thank you, BSE, for a great 5 years! I wouldn’t have wanted to be anywhere else!

3 years old
2 days before he is 8 years old

 

 

 

What I want to tell the person who called my son weird!!

I heard what you said when you thought no one was listening. You called my son a name; you said he was weird!  It wasn’t said in a joking way it was said with disgust. It hurts my heart for Jake and I pray he wasn’t nearby when you said what you said. He knows what weird means and has been called this before. He tells me from to time he is weird and I have worked hard trying to get this label out of his head.

Just so you know, we are all a little weird in our own ways. I don’t think there is one human on the planet that doesn’t have their own quirks or something that others think is different. I mean, God created each one of us as individuals and no two people are alike. We all have similarities and differences, that’s what makes us all unique; in my opinion. It’s a sad world when someone feels he or she needs to point this difference out in a child to make themselves feel better especially when this child has special needs!

I’m sure you said this because he makes you uncomfortable and you don’t know how to talk or relate to him. Try treating him with respect and he will open up to you! Please know that I do everything in my power to keep him calm and help him try to have conversations. Jake needs help talking to people, he is still learning social skills and needs someone who will respect his autism and to be patient.

Jake is autistic and if that makes him weird then I have some books I want to share with you or we can have a conversation or two; if that would help. Jake did not choose to be autistic nor did he ask to be called names by adults or anyone else. Jake is different. I love this about him! He is smart and is developing a sense of humor. It may not be what you might expect or understand but he is pretty funny. Jake is developmentally delayed which means he isn’t like other children you may know who are 7 years old. Jake’s autism is a processing disorder which means when you talk to him he may not fully understand and might need a minute or need you to repeat the question so he can process the information. It isn’t because he is weird; he is autistic!

Before you judge my child or any other child think about this; what entitles you to call anyone, especially a child, a name?

I also want you to stop and think about all the hard work and time that we have given Jake, as well as all the hard work Jake has completed to get where he is today. We have spent countless hours and not to mention thousands of dollars over the past 6 years to help him to be able to do what he does today. But I’m sure you don’t think about these things because you’re too annoyed that Jake doesn’t talk to you or seem interested in you. Jake is interested, and although you think he isn’t paying attention; he is! He watches every move you make and hears every word that comes out of your mouth. I will say this again, he just needs someone who will approach him, treat him with respect and to be patient!

Jake is awesome and yes, I’m his mom so I’m biased, but he works every minute of every day learning to accomplish new things. There are a lot of people who see the strides he’s made and see the possibilities that await him in the future. I’m just asking you to take a moment when you are with my son and give him a chance before the name calling begins. When given the opportunity he will change how you view autism and all kids with special needs.

Sincerely,

Jake’s Mom ~ the one person you don’t want to mess with when it comes to my son who is autistic!

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Jake doing what he loves best; iPad on his exercise ball 🙂