time flies

We all say it every year; “I can’t believe how fast time flies” as our child’s birthday approaches. It really does seem to go faster and faster as our children get older. My oldest is 26 and I remember nearly everything about the day he was born and it is hard to believe that little baby is now a grown man. Jake will be 7 in a few days; and yes, it is hard to believe and yes, time has gone super-fast!

On the day my boy was born everything seemed fine. My mother’s intuition told me something was not quite right but at the time I just didn’t know what. He was a big and chunky baby who was super cute and just the right size for cuddling. I think about that first year and how out of sorts I felt. He wasn’t like my other kids; he wouldn’t cuddle or want to be held. He wasn’t unhappy but he wasn’t happy. He would smile and laugh but it took a lot to get him there. Once he realized he could make us smile or laugh he would do things to get the feedback he wanted. I remember wanting to snuggle with him when he was about 4 months old, I craved it so desperately, so I thought ‘I’m just going to pick him up and hug him whether he cries or not’. He screamed. He sounded like he was in pain. I remember putting him back in his bouncy seat and a smile lit up across his face. I was glad he was happy in his chair but in all honesty, I felt like a failure. I knew I wasn’t as I had my other kids but I just didn’t know what to do with Jake. I spent a lot of time trying to figure out how to teach him the smallest things. Jake had no interest in saying da-da or ma-ma. I tried to teach him to wave, drink from a sippy cup and imitate the smallest gestures. He would look at me but with a blank stare. I kept pressing on. I remember being at lunch with a couple of friends and I was bound and determined to get the boy to wave before his sister came back from visiting her grandparents in NY; Jake was about 16 months old. I kept at it for a solid week. Nothing I did seemed to work and I was getting so frustrated. At the time I knew it didn’t matter but I wanted to teach him something, just one thing!! Geeze, thinking back on this makes me tired. I remember everything and feeling so disconnected from my child. Little did I know this was the beginning of a very hard but awesome journey. By the way, Jake didn’t learn to wave until he was around 3 1/2 or so. He started with the backward wave and over the past year and a half can now wave at me without any effort or thought!

Thanks to a “million” hours of therapy Jake is now doing so many things on his own and learning at a rapid pace. Seriously, there is nothing this boy cannot do. Some things take a bit longer to learn due to his lack of fine and gross motor skills but those are coming along. The other night it was bedtime and usually John helps Jake get his pj’s on but that night Jake said “dad, you stay here. I’m going to dress myself!” He came running out of his room so incredibly proud saying “I did it!” He put on his pj’s all by himself and although they were backwards it was huge. He knows he can dress himself and does from time to time but I am usually making him do it and it is a fight. But to hear him declare he would do it by himself was a bonus. Little does he know he has shown us he can do it and will be doing more of his own dressing going forward; should be fun – ha!

Jake is in the first grade and started the year with a full-time aide, Mrs. K. His aide is fabulous and sits back to see what Jake can do and only jumps in when the time is right. We absolutely love this woman!! When school started back after Christmas break we reduced the time Mrs. K. is with Jake; she is with him in the morning for about 2 1/2 hours.  The IEP team agreed he could handle being in class without her and his awesome teacher, Mrs. Spiker, assured us she would look out for him. She keeps us informed and will let us know if she feels Jake needs more one on one help. Jake has adjusted well and the only complaint I have heard from Jake is that he misses his Mrs. K. Mrs. Spiker is working hard with him to get him ready for the second grade and although it can be a struggle he is following directions and is a part of the classroom with minimal support.

A few days ago I asked Jake what color his behavior clip landed on for the day. Each day the kids start off on green and move it up or down depending on their behaviors. For the most part Jake lands on green or blue but this particular day it was below green and landed on yellow which means caution. I asked him why his clip was on yellow; he closed his eyes and put his head down. I asked him again and he whispered “Mrs. Spiker told me to stay in my seat but I didn’t”. He then told me all the reasons why he needed to get up and lastly he said it hurt him to sit for so long. I asked him if he had his tools to help him sit (wiggle cushion, weighted lap pad) and he said he didn’t need them. At the end of the conversation he now knows he needs them in order to follow directions. Funny thing is he knows when he needs his “tools” and usually self-advocates for the things he needs. So he has learned to make excuses too — ha! But the cool thing is he knows what he needs. He has learned to get the tools we’ve given him when situations become too much. This has got to be one of my favorite parts of this journey so far.

Jake is super excited about his upcoming birthday. In the past, birthdays have been hard but now they are a lot of fun for him! He told me exactly what he wants to do and what gifts he wants but the thing he is most excited about is that he can now blow out candles on his birthday donut (Jake won’t eat cake)! Back in November when it was Allie’s birthday he was happy he wasn’t afraid of the candles. A few weeks later I had a candle burning and he wanted to blow it out, afterwards he starting jumping up and down so excited saying “I can blow out my candles on my donut now!” It’s the not so little things that I love to see!

This boy will be 7 on Thursday….how time flies!

 

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Birthday’s 1- almost 7 🙂
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juggling autism, ocd and typical behaviors

Jake always wants to go to school. If it’s a school day, he jumps out of bed and can’t wait to get there. This past Tuesday it was a little different. I went into his room and told him good morning. He said he needed to finish reading his book and he would be out soon. I went back to check on him a few minutes later because this is so unusual for him; he was laying in his bed playing. I asked him if he was going to get up and I sang “school today”. He looked at me and said he was sick and didn’t want to go to school. He has had a cold and so he proceeded to tell me “I can’t go to school with a stuffy nose, I need to stay home.” I sat down next to him and said “but you love school, why don’t you want to go?” He didn’t look at me and continued fidgeting with his toy. I asked him again waiting for him to process my words and after a few minutes he said “it is too hard; I don’t want to go.” I said “Mrs. S. and Mrs. K. would be sad if you weren’t there and your friends would miss you too.” Jake replied “oooohhhh ooookkkaaaayyy, I’ll go.” He climbed out of bed and walked into the family room; he NEVER walks! After a few minutes he was fine and couldn’t wait to get to school. Later that same morning I asked him what was too hard about school. It took him several minutes to process the question but he got there and said “they want me to do work and I get in trouble all the time.”

Jake doesn’t get into trouble all of the time but the expectations from him have grown. He will be 7 in a couple of weeks and he can do a lot more than what he could do just a few months ago. His teacher, aide and I all agree that if he will be successful in second grade he needs to be able to do more things independently. Jake is expected to follow directions and adult instructions with minimal reminders. He can do this, it isn’t something new, but in the past we have all given him two or three chances. In the past he needed these chances to process information and understand what was being asked of him. In my opinion, this has become his routine and although he doesn’t need the extra time to understand or complete the action it is his routine and due to his OCD tendencies and repetitive autism behaviors he is having a difficult time. We’ve been harder on him at home as well at school. He is having a hard time adjusting to his “new routine”, at home he has had more time outs than ever as well as more meltdowns. But it is for the greater good. It’s hard for him and me! I don’t want to take away favorite toys or activities because he chooses to tell me in his favorite Charlie Brown voice “I don’t want to do this and you can’t make me!” (Charlie Brown says this to Lucy a few times when she is trying to get him to kick the football) BUT nothing makes me madder than when one of my kids tells me that I can’t make them do something…you better believe I can MAKE you do it and do it you will!! Oh the things that fly through my head when he says this to me!! Anyway, Jake is adjusting and has learned to listen and follow the instructions given.

I’ve done some research on how to help Jake with some of his OCD tendencies and learned that it overlaps with his repetitive behaviors associated with autism. This is from The Autism Blog about OCD and ASD (autism spectrum disorder):

There is overlap between behaviors seen in children with OCD and the ritualized/repetitive behaviors commonly observed in children with ASD. Children with ASD may perform repetitive or ritualistic behaviors, such as ordering, arranging, counting, or touching/tapping.  However, children with ASD are not likely to think (“obsess”) about their rituals and are more likely to simply act upon their urges.  Children with ASD therefore, may present with limited insight into the “reason” behind their ritualized behaviors. Children with ASD are also less likely to be using their ritualized behaviors to “neutralize” fear or anxiety and/or “keep bad things from happening” (as would be true for OCD). Rather, ritualized behaviors associated with ASD may satisfy other needs, such as modifying sensory input, gaining reinforcement from the environment, or preserving “sameness” in their daily lives.

He truly isn’t being defiant when he needs to be told 3 times to do something; he just needs to hear it three times so he can move on and complete the instruction. It is like his brain gets locked up and he truly cannot physically make himself do something until he hears the instruction for the third time. It took me a bit to get this because I thought he was being defiant and most people might. But when I stop to look deeper it is way more than that. Jake can be defiant, he can be stubborn and he can be unruly but he is almost 7 and what little kid doesn’t want to just do what they want to do. He doesn’t want to stop playing on his iPad, he doesn’t want to stop watching his favorite show or stop reading his books. He doesn’t want to be told what to do and he has told me this numerous times. BUT he wants to see a smile or hear ‘good job’ he hates when someone has a frowny face or seems cross with him. Many times he will determine if he will keep doing what he is doing just by looking at my face if he sees I am already getting angry he will stop and move on to whatever it is I told him to do. So he knows the right thing to do, he hears the words and he can follow the instructions given. But when his OCD sets in it makes it incredibly hard for him. There are so many factors that go into Jake’s behaviors and so many thoughts that run through my head each time he doesn’t do something I ask. ‘Does he hear me, does he see me, is this autism or is this typical, is this OCD or is this part of his autism; I’ll give him three chances, no wait…this isn’t OCD he just doesn’t want to stop playing, he gets one chance, am I doing the right thing…’ and the narrative goes on.

Whether you have a child or children on the spectrum or they are typical we all have similar thoughts. The only thing I find that is different is if the child is autistic and understands what is being asked; there are so many possibilities of how to handle even the smallest situation and it gets tiring fast! But I have learned being consistent is key. Our kids need it and we need it! Jake has shown me he needs the consistency; he needs this sameness BUT I also have to break it up a little because if I don’t it will become a set way things have to go each time there is a “situation”.

It’s a juggling act 🙂

 

 

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discernment

Like most people this time of year I tend to reflect on the past year. I go over what great things happened and pick a part what went wrong so I will hopefully not repeat the same mistakes. I think about my family and how I’ve grown closer with some and others have drifted away a little. Anyway, while doing all of this deep thinking I am brought back to Jake and Allie. As I reminisce I can’t help but feel pretty great as to how much Jake has grown. He has progressed more than I imagined he would and can’t believe we are seeing the big goals being met. I also find myself thinking about my daughter; she has 5 months of high school left and then she will go away to college in the fall. She and I have had quite the roller coaster ride. We are close but she is still a teenager who is very stubborn and strong-willed. Her strong willingness has taken her far in school; she will be graduating with honors and has maintained above a 4-point GPA throughout high school. Her strong willingness has also made her a bit defiant and well let’s just say she wants to break away and do her own thing. As much as I want this for her it is hard as a parent to let go. I have a hard time with this with both kids. My brain tells me to step back and see what they can do but my heart wants to hold on just a little bit longer. 

Jake lets us know all of the time…“I can do it by myself”, “I’m a big boy”, “I don’t need any help”. It is really gratifying to see him asserting himself and letting me know to back off a little. At the same time, it can be difficult. Because of Jake’s developmental delays I don’t know what the right thing to do is. If I don’t help him will it frustrate him to the point he won’t ever try again and if I do step in will it make it easier then he won’t want to try on his own. I want to make things a little easier for him but in all honesty what good will it do for him in the end? He won’t learn to do it alone; he will always expect me to do it for him. If I’ve learned anything about being a mother over the past many years is I know I have to step back. I have never been a helicopter parent per say but since Jake was diagnosed with autism I have certainly become one. 

My word for 2016 is discernment which goes hand in hand with wisdom. Being able to discern if something is right or wrong isn’t that tricky. We all have morals and know or should know the difference. For me being able to discern if I should step in or let go gets to be a little cloudy. I waiver, I question if what I’m doing is the right thing and spend way too much time battling choices that are being made. Being a parent isn’t easy. From the minute our baby is placed in our arms our first instincts are to love, protect and teach. It doesn’t get easier the older our kids get it actually gets much harder. 

One of my goals this year is to take a step back. Allie is 18 and I’ve taught her as much as I can; I will be prayerfully asking for her to have discernment and wisdom as well. I also want Jake to do more on his own, let him experience more and help him when he asks for help but not before. Jake will be 7 in a few weeks and I want him to see that he can succeed with and without my help. I’ll be hovering less and instead assisting as needed. Boy, this is going to be a tough one for me!

 

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