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!

mrshansen

 

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!

 

img_7472-2

 

Advertisements

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 🙂

befunky-collage

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 🙂

c8e33cdf-2b54-495f-b003-44d062913f94