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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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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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 🙂

the first time…

The past few weeks we have seen a lot of growth in Jake. These weeks have been full of many “firsts”. These warm my heart and make those very long day’s worth ever second. For those with children on the spectrum, no matter where they fall, persistence pays off. The hours of tantrums, tears and emotional break downs, both the child and the parent, there is light. It might not be this huge TA-DA moment but they are there. Keep hoping and doing what you do. Even if your child is not on the spectrum but you find this parenting thing so hard; there is always that light and the hope for what will be in the future!

Here are a few things Jake has been up too lately:

  • Jake told me he loved me! I didn’t say it first. He called my name and said “I love you!” I honestly, had sort of given up expecting to ever hear him say these words to me without me saying them first.
  • Jake has been talking nonstop. Less than a year ago I wondered if we would ever have any type of real conversation. His conversational speech has improved just over the past couple of weeks. He is always telling me something he has read or seen or something he thinks is interesting. He wants to make sure I am listening and asks questions and we go back and forth. Ask him anything about Transformers and he will tell you! This is the majority of our conversations but hey, I’ll take it! I always wanted to know the history of Optimus Prime – ha!
  • Loud noises have always bothered my boy. He will cover his ears, fall to the floor, curl up in a ball and cry. Jake used to do this with all loud noises but lately if they are expected they don’t seem to bother him in the slightest. This past Friday we attended the school’s annual fundraising race. The music was really loud, the kids were even louder and Jake didn’t seem to mind how loud it was. I was watching him to see if he needed my help but he did not! He danced, cheered and shouted with his friends!
  • Jake ate a lollipop. He doesn’t eat and won’t try any type of candy. He had gotten one at school one day for being a good helper or something, got in the car opened it and started sucking on it! What?!?! He didn’t eat the whole thing but he tried something new!
  • Jake tried a popsicle. He hates cold things and has been offered popsicle’s many times but this past Friday he decided to try one. He might have licked it once but he held onto that thing like it was a prized possession!
  • Jake allowed his hand to be written on with a sharpie, something for school, and didn’t hate it.
  • Jake got a temporary tattoo at school. Now this one was a little harder for him, he really wanted it because it was part of the race day. After I put it on him he wanted it off. He hid his arm and wouldn’t let anyone see it. He picked at it, licked it and did everything he could to get it off. BUT he didn’t cry or freak out; huge moment here!
  • Jake will say hi and wave to people he knows and responds when someone says hi to him. This has been a long long work in progress and one of the biggest moments thus far in our journey. It is almost strange for me to hear a child say hi to Jake and he responds with hi. I really couldn’t believe it when this happened the other day! (Thanks Dr. Allison!!)

Jake wouldn’t be where he is without the many wonderful therapists (I’ll write more about them later) that have helped Jake. Right now he has this amazing teacher. She treats him with respect and pushes him just enough. Jake trusts her, he loves her, he respects her and because of this he feels secure to try many new things.  Jake had the best 1st grade teacher and I didn’t think he would be lucky enough to have another great teacher but we do; Jake is blessed!

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So you can see, anything is possible! Keep encouraging, offering and keep moving each day. You just never know when your child will do something that you didn’t think he would ever do! Jake may never get his hands super messy finger painting, he may never run through a sprinkler, write without a struggle or try unfamiliar foods. But just because he refuses something today doesn’t mean he will always refuse. There is this hope that I have and with that hope I am certain he will do many more things that today he doesn’t!

 

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keeping it real

Life with an autistic child is hard! Jake is 7 1/2 years old and although he is verbal and incredibly smart we still have many challenges. I write a lot about his progressions but many times I don’t elaborate on the hardships we face daily. I am a “the glass is half-full” type of person. There is always a positive side of things and my dad brought me up to always look for the “good” things that happen, focus on those and don’t dwell too much on the difficult. Therefore, I tend to write about Jake’s struggles but I don’t focus on those too much because I know in the end they will work out. All of that being said, I do see Jake’s challenges and look for them all the time because without seeing where he is having a hard time I won’t know what to work on with him.

So I wanted to invite you in to see some of our daily struggles with Jake.

Life with Jake is very rewarding but it is extremely hard and can be extremely frustrating. I get frustrated daily and sometimes I feel I stay frustrated the entire day. I stay tired. My mind doesn’t shut down unless Jake is asleep. Jake is in the second grade and these are some of the things that he has a hard time doing without help.

Jake cannot dress himself. He can put on his own underwear and shorts but it is hard for him and starting the day trying to get him to dress himself sets him up for a troublesome day. So most mornings I dress him from head to toe. Socks are incredibly difficult for him, I’ve tried every brand but his motor skills aren’t where they need to be just yet and he struggles. Jake is fully potty trained and stays dry each night. YES!! This is a HUGE deal. It only took 4 years to get where we are today. Jake cannot wipe himself though, we try and we work on this with him but let’s just say he can’t do it yet. Jake cannot bathe himself. I still have to give him a bath, wash his body and hair. He is learning how to wash his body but in order for him to get clean he needs my help. Jake hates the shower and won’t even try it! You might think, just keep trying it and eventually he will like it. I do try but each time I bring up the subject panic sets in for Jake. He has never liked the rain and the shower is very similar. The thought of water sprinkling on him gives him so much anxiety and the fear that comes across his face is nearly heartbreaking. I know he won’t always be like this but like everything else it is a work in progress. Jake cannot brush his teeth alone. He has difficulty holding the tooth-brush and moving it around in his mouth and he doesn’t fully know how to spit. I have to brush his teeth and try showing him how to spit. He can spit a little but has a hard time with this concept. Jake cannot blow his nose. We work on this too. He has a hard time drinking from an open cup. He can do it but usually spills which brings tears and having to change his clothes because having the smallest amount of wetness on his clothes brings anxiety. Jake has difficulty expressing his needs and often resorts to grunting or pointing. Jake is afraid of change or unexpected issues. Here’s an example, the other day the emergency alert came across the TV. You know the one with the loud noise saying this is just a test. Jake just sees the emergency and freaks out. He ran to me crying that there was an emergency and we wouldn’t be able to go to Target. It took me about 15 minutes to help him calm down and understand that it was just a test and there was no emergency. He chose to hide under his blankets to find his calm before he could move on and accept that things were really okay. Hiding under blankets brings him so much peace and allows him to regain control. Jake is deathly afraid of the dark. A few weeks ago our power went out in the middle of the night which left his room dark and his sound machine cut off. We woke up to blood curdling screams. Fortunately, he has a battery operated lantern and that helped him go back to sleep and the power was only off for a couple of hours.

I could go on but you can see some of the daily struggles Jake faces. I’m sure many of you have typical kids that do some of these same things and Jake’s three older siblings had their own struggles. My point is; it is just different! It isn’t the same. I could talk to Jake’s older brothers and sister, they would understand and within a minutes or a couple of days working on the problem they would get it and we would move on to the next issue at hand. With Jake it might take weeks, months or years. I have more to do, more to teach and a lot more words come out of my mouth each day and all of this makes me really really tired! I do insist that Jake does more for himself but when I am exhausted I have to think ‘can I handle the break down that might come from me making him put his own clothes on? Do I have the temperament at that moment to not get frustrated and work with him to brush his teeth?’ Triple or quadruple the amount of time it takes to teach something like holding a pencil to another child and that doesn’t compare to how long it took Jake to learn.

I am thankful there are some things I have never had to teach Jake. When he began reading around the age of 2 1/2; I was dumbfounded. Today he is reading above grade level and I didn’t have to teach him one bit of that. Math comes pretty easy to him as well; the word problems is where he gets stumped. He can memorize anything and won’t forget it! I haven’t had to work with him with any these things. Am I bragging? Heck NO!!! I am thankful that these few areas I could rest and thank God for helping me out!

This is autism. This is real! It isn’t, by far, the worst thing that I could have to go through. It is just hard. I am able to go to sleep each night, rest and gear up for another day and I am thankful for that. Jake is funny, he has one of the sweetest smiles, his facial expressions make me laugh constantly (they always have) and overall has a sweet disposition. Jake has determination and won’t quit until he figures something out. He loves Transformers, Thomas, PJ Masks and Mickey Mouse Club House. I love that he can go from the fighting of transformers to sing the hot dog dance with Mickey Mouse! I love that he is still a child. He does his own thing without thought to what others think. He speaks his mind whether with words or with his body language. He can be defiant one minute and the next doing exactly what was asked of him. It is a roller coaster!

This is our journey with Jake 🙂

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iep and social interactions

Two weeks ago we had Jake’s annual IEP (Individual Education Plan) meeting. It went well which is no big surprise. For those that aren’t familiar with IEP meetings, this is where we go over goals, review how the child is doing in school and look at what can be improved to make the child’s day at school more productive. Jake is doing really well, meeting his goals and overall being a good student. Since starting at this school the day after Jake turned 3 his IEP has shrunk in size. Jake’s binder was enormous with all of his goals, progress reports from different therapists and doctors etc. I don’t need to carry the binder anymore, which is a good thing!

One of the main things we discussed was whether he needed an aide. Prior to the meeting, Jake’s aide spent about 3 hours with him each day. Jake’s teacher felt that Jake didn’t need an aide except for about 15-30 minutes each day and this was for extra help during music and art and to take Jake to the sensory gym for a break each day. This made me incredibly proud, happy, scared….so many emotions; but Jake is ready. For the past two weeks Jake has done really well without his aide. We have also been going through the regular car line in the mornings versus the special needs car line. We started this the first day of school and Jake loves it. He still prefers to have someone walk with him inside the building but usually by the time he gets halfway down the hall he walks to class, with no help, like the rest of the kids. He said he felt like a big kid! Makes this momma’s heart happy happy!

Jake is continuing to attend the weekly social skills playgroup which he loves. This is one of the most challenging areas for Jake. Like many kids on the spectrum he doesn’t know how to interact and honestly doesn’t want too. He is happiest playing or being by himself. But I feel it is important for Jake to learn how to interact with others as well as how to have friends. This is a hard concept for Jake. In today’s society we have interactions with people each and every day. We may smile at someone and they might look away, grumpy. I myself might think, ‘wow, they have an attitude’ but maybe they don’t know what to do when someone smiles at them. Jake doesn’t a lot of the time. You might smile at him and he might just stare back at you or look away. He isn’t being rude he is still learning how to read expressions when there are no words spoken. This is the sort of stuff I want Jake to learn. The last thing I want is for someone to walk away from him thinking he is a rude kid.

The other day while I was at school having lunch with Jake one of his classmates asked me why Jake named him as his sidekick. I said “I think Jake likes you and thinks you’re his friend” and the child responded by saying “I don’t even know him; I don’t know his last name. When anyone calls him by his name I think, who are they talking about?” So, I’ve obsessed about this a little; okay a lot. Is this how the kids think of Jake, as some boy in their class that they don’t know or don’t care to know? Is he just another body in the class that no one pays much attention too? I’ve been told this isn’t true, there are some kids in Jake’s class that play with him and help him out along the way. But this very short conversation is sticking with me. I had thought I might not continue the social group, mainly because it is extremely expensive, but after praying about it I knew Jake needed it and was glad I re-enrolled him especially after what his classmate said to me.

Jake appears to be oblivious to others around him and what they are saying to him or about him. I use the word appears because he doesn’t seem to take notice and goes on being this happy smiling kid. But I wonder if he knows he is different, does he hear or see what the kids are saying and doing around him? I’ve tried talking to him about his autism and what it all means but he doesn’t appear to grasp it but that doesn’t mean anything. Jake hears and sees all but I’m not sure he knows how to process it all. Anyway, this is a work in progress and one day he will be able to verbalize to me all of this information he is storing up in his beautiful brain!

Overall, Jake is making a lot of progress! I couldn’t be happier. So for today, we will celebrate those progressions and keep working on social stuff in hope that one day it all clicks and we have another box to check, complete 🙂

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