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 🙂
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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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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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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!

off to a great start

Here we are nearly a month into the second grade and Jake has had a fabulous start! I almost don’t want to write that so I don’t jinx anything but honestly, I couldn’t have asked for anything more! Jake is doing extremely well and has adjusted, mostly, to his new aides and loves his teacher! Jake had the best first grade teacher and in all honesty I didn’t think his second grade teacher would measure up. Thankfully I was wrong! Mrs. H. is the perfect fit for Jake. I shouldn’t ever worry because the staff at Jake’s school takes extreme care in placing those with special needs, all kids really, with a teacher that they will have a connection with. As in the past, Jake is excited about school and seems to have a sweet bunch of friends. I almost don’t want to breath or say anymore…it’s like waiting for the other shoe to drop. But all of that to say, I am beyond thrilled.

Jake has also been attending a social skills playgroup each week. The first couple of sessions were hard, although he was with kids he knew it was loud and he was having a hard time responding and connecting with the group. Fortunately, his therapist has another group so we tried that one and even though Jake doesn’t know anyone he is responding so much better! We are seeing his lessons carried over into the home and at school.

One-day last week Jake’s school had a lock-down drill. Although Jake was warned what was going to happen he was still nervous and was having a difficult time. One of Jake’s classmates, a boy from his 1st grade class, went to the teacher and said “Jake is really worried, I am going to help him”. Jake accepted his help and seemed to calm down! First, the mother of this little boy needs a pat on the back for raising a child that has such compassion! And second, Jake accepted his help. There have been times when he doesn’t want anyone near him and gets frustrated when he is in a situation like this. The next day the class was instructed to put their things away and as Jake walked by the little boy’s desk that helped him he took his things. Mrs. H. asked him if he was being silly or being nice and Jake looked at her and said, get ready because this is a big deal, “He helped me yesterday and I wanted to help him today”. Later that night, as I was tucking Jake into bed, I asked him about what he did and why he wanted to help his friend. Jake pauses and I repeat my questions and he looks at me and said “It is nice to help your friend’s and I am proud I thought of my friends feelings”.

Therapy is very expensive and many are not covered by insurance. I struggle every session, thinking that maybe we could skip one and it will be okay. But after seeing the breakthroughs and all that it does to help my boy, it is worth every penny! Like most parents in my situation we have to pick and choose therapies and we hope we pick the right one to help our kids. But I look at the big picture and think of how I want to see my boy in 5 years, 10 years and so on and that makes it a little easier to make these tough decisions.

I couldn’t be more proud of my boy and the fact that he is proud of himself is just the icing on the cake!

 

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IMG_9531 Artwork he completed on his own 🙂
Jake will play anywhere 🙂

 

 

P.S. Allie has completed her 2nd week at college. She is doing well, it is hard for her but I’m proud of her for living in the dorm, getting to class and her job on time. Rush starts this week and am praying she is surround by sweet friends and that she is protected from the people that will try to persuade her to go against what is right.

 

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