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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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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ugh…behaviors

Jake has finally gotten used to our new school routine. Once he understands what times we need to do things in the mornings he is pretty compliant; responding to my directions. It always takes us close to a month to get into the swing of things. And as per usual, he has gotten comfortable with his class and teacher which means behaviors start to rear their ugly head. Fortunately, Jake’s awesome staff took care of things swiftly. I talk about Jake’s school often but I cannot help it; it truly is the best school for Jake.

About a week ago Jake decided it would be funny to act up in the lunch room. Jake goes to lunch with his class without his aide. Jake loves lunchtime because he is able to sit with his peers, talk and be silly. Jake likes to make people laugh! If he gets a good laugh he will continue doing whatever it is he is doing for the laughter to continue. On this particular day, Jake decided to take his shirt off and I’m pretty sure, had the lunch room attendants not seen him, he would have been buck naked had he not been stopped. UGH!! Jake’s teacher called to tell me about this incident and I was somewhat mortified. I mean, he has never taken his clothes off in public before so I couldn’t imagine why he would do it now at 7 years old. This is one of the tricky things about autism, expect the unexpected! Later that evening John and I asked Jake why he did this and his response was “it made people laugh”. He wasn’t smiling, he knew he was in trouble and he knew this was not appropriate. I asked him where is the only place you should take your clothes off and he immediately said “at home and nowhere else!” The same day Jake was defiant and rude to his teacher and aide. He was out of sorts to begin with and when encouraged to go to the sensory gym, he refused. This was a stellar day; NOT!

Jake’s teacher called me and had already spoken to his resource teacher. His resource teacher, Mrs. O., created some social stories and also set up a scheduled sensory break for him. Jake didn’t want to leave his class, he loves it so much and the thought of being pulled out for something that the other kids aren’t doing upsets him. We all reassured him that he wouldn’t miss out on anything and he would feel much better after going to the sensory gym. Like everything else, it took a couple of days but he loves it! He told me the other day, “I feel good after I jump on the trampoline with Mrs. L.!” I am sure Mrs. L. (his aide) and his teacher love working with him even more after he has some time to take this much needed break.

Accommodations are necessary for Jake. He does have autism. He does have developmental delay; although he is 7 1/2, he acts like a 5-year-old a lot of the time. He does have sensory processing disorder. With that being said, I don’t like unnecessary accommodations. I want Jake to be treated like all the other children and given the same rules and the same consequences. Just because he is autistic doesn’t give him a free “get out of jail” card. The thing I appreciate most about Jake’s school is that they hear me, understand and work with me and Jake the best they can to meet his needs while pushing him to excel. If I asked for special accommodations for everything Jake wouldn’t learn as quickly, he would learn that because of his autism he can get away with things that others can’t. And at the end of the day we all would be setting him up to fail. Some may say it isn’t fair that Jake receives accommodations. But what is fair? It is giving each and every child what they need so they all succeed. What Jake needs isn’t at all what Allie or the boys needed at this age and vice versa.  

My hope for Jake is that he will continue to learn and grow. He will make mistakes and have consequences so that those mistakes won’t be repeated. Let’s hope Jake has learned that clothes only come off at home and not at school!! 🙂

 

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Tomorrow we have our annual IEP meeting for Jake; it should go smoothly. Praying it does!

2nd grade and college bound

2nd grade…

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Jake had a great first week of 2nd grade with the exception of getting sick the 3rd day and missing school. But otherwise he is doing well. He has connected with his teacher which is a HUGE HUGE thing and even gave her a hug on the 2nd day of school; something he very rarely does! Our entire routine is different this year. We now live closer to the school so I’ve had to adjust our times of when we do things in the mornings but Jake has had no complaints. And for the first time we are using the regular car line in the mornings and not the special needs car line. He wasn’t too sure the first day we did this but he was comforted when he saw that his new aide was waiting for him. Jake has adjusted well to his new aide which is someone he knows well as she was one of his prek teachers. Mrs. L. is super sweet and from what I can tell, Jake is responding well to her. Overall, I couldn’t be more pleased. Major sigh of relief 🙂 Although I knew he would be fine, those stupid ‘what if’s’ crept into my head. One night at dinner I asked Jake what was his favorite thing about his day and he said with a huge smile “that I was a good listener” then I asked him what was the one thing he didn’t like and he said “I do not like indoor recess!” Jake works so hard to keep his behaviors in check and we are always working on being a good listener. Having autism and sensory processing disorder really makes it hard for him to focus and follow directions so it was nice to hear from him that he is proud of himself. Knowing that Jake is happy and in good hands makes it so much easier to take him to school each day. I know we, as parents, all feel this way but for me it is really hard starting a new year. The change for Jake is hard and hard for me. But each year that Jake has been at this school I pray constantly that he is protected, feels safe and is happy to step out of the car and head into his school. And each year we both feel the answer to those prayers.

 

college bound…

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Wow, in the blink of an eye Allie went from being my 2nd grader to a freshman in college living on campus (we move her in tomorrow, Thursday). I am thankful she is not too far from home but the fact that she won’t be here every day just seems so strange. I don’t think it will really hit me for a week or two; I’m assuming it will feel like she is on a trip or something. But she is ready and I am ready for her to start this new chapter. I am really excited and nervous for her. I’ve been stepping back and letting her sort of take the reins since January of this year. She gets herself up on time (mostly), studies without me standing over her, and is overall a pretty responsible girl. The unknown is what makes me nervous. Who will her friends be, will she make good choices, will she be able to do everything that needs to be done (work, school, sorority), and the list goes on. But I pray, have hope and faith that we have raised her well and she will remember the lessons she has learned a long way.

I know both of these “kids” will do amazing things. I know they are both ready for what lies ahead. They are ready; guess I need to catch up and get ready too 🙂

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I use this verse a lot but it is so appropriate! 

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.”

it’ll be here before we know it…

Cannot believe we only have a week until school starts back! Well, for Jake anyway. Allie moves into her dorm August 18th. I am anxious about the upcoming year.

Jake will be fine but I am always anxious, worried…you know the butterflies in your stomach. Hoping and praying hard that 2nd grade will be a great year! One thing I am not thrilled about is our beloved aide (MK) will be going to a local middle school and won’t be with Jake. She has been Jake’s primary aide for 2 years. She knows Jake and even when she wasn’t with him during the day she was available to help whomever was with him. She knows his quirks, she can see when he is getting upset or about to meltdown and intercedes. I am happy for MK but selfishly I am really bummed. All summer I was sort of patting myself on the back because I wasn’t nervous or worrying over the next school year. Here I am a week out and my stomach is in knots!! Don’t get me wrong, I trust Jake’s school and the administration as well as the other aides I know. And one thing that gives me great peace, once I put my anxious thoughts aside, is they truly do have Jake’s best interest at heart. I know beyond a shadow of a doubt that if there is any kind of issues they will work with me to iron them out. But I worry.

John and I were talking about all of this and he said the same thing my best friend said; “it will work out. It always has worked out for Jake and this time will be no different.” Looking back at the past 5 plus years we’ve been on this journey, things have always worked out for the best. I have been fortunate to have had the best therapist’s, teacher’s and aides along the way. Each one of these wonderful women brought their gifts to help Jake and shared their knowledge with me which in turned helps Jake every day. The word blessed is overdone, in my opinion, but sometimes it is the best word there is and I do feel so very blessed.

God has always watched out for me and no matter what I do He always intercedes and takes my doubt and turns it into thankfulness. I feel certain this year will be no different. Jake does need to become more independent at school and maybe having different aides working with him will encourage him to do more on his own. If I have learned anything over the past years is to trust, hope and have faith that God has my boy and will do amazing things, like He always does, not only in Jake’s life but my (our) own.

Okay…then there is Allie. She will be moving into the dorm later in the month…sigh. I have so many mixed emotions about this and feel like I am on yet another roller coaster but this one is going much faster. Hard to believe my little curly-headed girl is going to be a freshman in college and living on her own. Fortunately, she is only about 40 minutes away but still…again the nervousness, butterflies and what not. God has a way of preparing us as parents for our kids to leave home. He makes it a little easier to say goodbye. There is a push and pull between us that I can’t really describe. She wants to go and many days I am ready for her to go!! She is loud, silly and drives me crazy which are things I hate but love. I wonder how quiet our house will be when she is at school and part of my heart hurts a little just thinking about it. The other part is excited that we might possibly have a little quiet. Jake is loud on his own but by quiet I mean she won’t be coming and going all of the time, no dirty towels on the floor of the bathroom, dirty dishes in the sink when the dishwasher is empty and awaiting the used dishes…the list goes on. But she is ready. I am ready. She needs to go and experience college the way she wants too. She needs this time to mature, make mistakes (hopefully without harm) and learn to be more independent. I’m excited for her and am looking forward to seeing how her life unfolds. But the mom in me wants things to stay the same, part of me wants the noise and the loudness and even the annoying habits but honestly a bigger part of me is ready.

With all the changes going on around here I know God has this and I know He has great plans for both Allie and Jake. Being a mom isn’t easy by a long shot. Being a mom to a child with special needs has shown me how strong I really can be and in turn has made me a better mother; at least I think it has.

So one more week for Jake and 3 for Al. We’ll make the most of it and hopefully won’t go to crazy getting to those first few days 🙂

 

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One of my favorite pictures of these two 🙂

 

So do not fear, for I am with you;
    do not be dismayed, for I am your God.
I will strengthen you and help you;
    I will uphold you with my righteous right hand.” Isaiah 41:10