6:05

Jake: Mommy at 6:05 I’m going to smile at you, okay?

Me: What?

Jake: I said at 6:05 I’m going to smile at you. That is in one minute.

Me: Alright buddy, I can’t wait!

As the clock turns to 6:05 Jake looks at me and says “Mommy” and then flashes his smile at me. It’s over pretty quick but I am smiling too. Since that day, if he is watching the clock, he smiles at me. The other day I asked him why he likes to smile at me at 6:05 and he said “because I like to smile at you!” This is totally fine with me!

Jake is obsessed with the time 6:05 it started back in August. He sets timers for 6:05 and looks at the clock each day waiting for this time. I think his love for this particular time came from a PBS show called Odd Squad where they had to feed the dinosaurs at 6:05 or things got a little odd. This is my best guess. Cute show that teaches math concepts.

Last night, Thursday, Jake starts making a beeping noise and banging his car. I asked him to stop and his beeps got louder and he points to the clock where it says 6:05 and he looks at me flashes me this awesome smile and goes back to playing. My heart is full at that moment. I was tired and really wanted to go to bed and his quick little smile rejuvenated me. Funny how a simple smile from him changed my attitude!

I took this picture on Jake’s first day of school this year with his teacher. He had to hold the clock and it had to be set at 6:05; I just love both of their smiles 🙂

 

Spiker&Jake

 

“Smiling faces make you happy, and good news makes you feel better” Proverbs 15:30 (GNT) 

 

 

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i wonder…

I often wonder if…

…I’ll ever watch an entire show/movie instead of just the credits. Or if I’ll ever get to watch more than just 10 minutes of said show/movie. Just about the time I get interested in a program Jake will say “that’s all” and change the channel.

…my home will ever look like the homes on HGTV instead of a playroom. Don’t really need the showplace type home just one where there aren’t toys on every surface. You may be thinking to yourself ‘why doesn’t she just clean them up or get him to?’ Ummm, I do and then they are back because he is playing with them…ALL of them! Oh and let’s not forget he has them in a particular order and to touch them well, let’s just say you don’t want to go there. It ain’t pretty!!

…the toys will stay nice and tidy for more than 5 minutes. Jake loves it when he comes home from school and all his toys are nicely put away in his room. To him it means yes, I get to take them all out again and line them back up!

…Jake will follow one request without me having to repeat myself 3-4 times. Sometimes it takes him time to process and sometimes he is just being stubborn. Either way, I really hate repeating myself!!

…I will ever sit on the couch for more than 5 minutes.

…or if when I’m sitting on the couch it won’t be used as a place to crash-land his 70 lb. body. I often feel like I’m in the middle of an earthquake. And I don’t EVER drink anything while I’m sitting on the couch. Why?? Because when he crashes he usually crashes into me and spills my drink (this has happened too many times to count) even if my drink sitting on my beautiful coffee table, I mean the train table, he will somehow knock that over as well.

…Jake will ever eat something other than applesauce, goldfish, or pretzels. Some kind of veggie or just something healthy. He used to eat any and everything that was put in front of him but now it has to be his usual food otherwise we can forget about it. Oh, and it has to be specific brands!

I rarely wonder what my life would be like if Jake didn’t have autism. I can’t picture it and even if I could he wouldn’t be the same boy he is now.

 

selfie

 

As much as he makes me laugh, drives me nuts and as often as my patience is tried; this kid is one of a kind!! ❤ him!!

struggles

Sometimes the struggles Jake faces are just too much for him and me. He struggles to find the right words to say and struggles to make those words clear. He struggles with his emotions and finding his calm. He struggles daily with what many of us would think or minor incidents. They aren’t minor at all. If you look at him you can see how frustrating, scary or overwhelming what he is going through is at that moment in time. It is so hard to watch him some days; my heart feels like it is going to tear in two. Fortunately those are just “some” days. But those days are magnified in my mind. I fight to help him find his words; he has to do it in his own time. I wait patiently while his brain is working in overdrive to get to the point of what he wants to say. Some days the words flow easily but other days they are stuck. I stand by when he is afraid hoping and praying he will run to me for comfort. Comfort is one of the things he doesn’t want. If he falls and hurts himself he runs away. My instinct is to pick him up and hug him, his instinct is to get away.

The other day I was throwing away 3 week old Mylar birthday balloons. As I wadded them up Jake fled from the room. At first I missed it; he was playing so beautifully but in an instant he was gone. I went to check on him and he had his headphones on and was under his weighted blanket. I asked him what was wrong, he looked at me with panic. I reached for him and he scooted back as far away from me as he could get and said “too loud.” At first I didn’t know what was too loud but I remembered what I was doing and asked if he the balloon noise was too loud. He shook his head yes and cried. In my mind it wasn’t loud at all. It was a crinkly sound but was over pretty quickly. But that is how it affects me not Jake. His heart was racing, his eyes wide with worry and he was hiding. I reached for him again and he shrieked “no!” I asked him if he wanted me to hide with him and again he said “no!” I shut the door finished throwing away the balloons and told him it was okay and that the noise was over. He continued to hide. Finally after about 20 minutes he cautiously emerged from his room and looked around. I told him I was all done with the loud noise. He slowly walked into the family room and looked around to make sure and then it was over. The headphones came off and he was back to playing but the rest of the day he was on edge.

What stuck with me that day was how Jake pulled away from me. I wanted to hold him and comfort him but I couldn’t; he didn’t want that. Jake has never wanted to be cuddled, held or kissed. This is how it has always been; my brain knows this but my heart doesn’t. The mother in me wants to rock him and whisper to him that everything will be okay. I want him to know I will protect him and do whatever I can to make things better. But words get lost and hugs are unwanted. When Jake is sick he will tolerate some cuddling and some hugging so I take advantage of those short moments. Of course I hate it when he doesn’t feel well; but many times the first thought I have when Jake is sickly is ‘he will let me hug on him!’ But when he is afraid the only thing I can do is to be quiet, give him the tools he needs and watch him go through it.

I tell myself, it has always been this way. I think to myself, why is this affecting me so strongly right now when this is how it’s always been? I struggle with having to watch him from the sidelines when the mom in me just wants to hug, kiss and comfort. I know it isn’t personal and as I’ve said before this is just who he is; this is Jake. I give myself pep talks often but when you kiss your child and he wipes it away and says “I don’t like that” or you try to give him one hug and he says “that is too much” it stings.

This is a real part of my life with Jake. I know there are many people with more difficult situations going on in their lives but this is my “difficult” struggle right now. Many don’t see this side of Jake. If you were to meet my boy he is almost always happy, smiling, moving and laughing. And I hold onto those smiles and the laughter; it is what gets me through the limited physical contact I have with him.

I know one day he will run to me for that comfort. I just have to wait and be patient; the two things I am not very good at!

Jake loves to take selfies so he will do pretty much anything I ask when we are taking one; sometimes this is the only way I get a kiss. But ya know what? I’ll take what I can get even if we have to have the camera on us 🙂

 

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as if autism wasn’t enough…

Jake woke up with a fever on Saturday morning, not a high one but enough to make him lay around which is totally out of character for him. He stayed on the couch for 2 solid hours! If you know my boy then you know this is not his usual routine. Jake is always moving and if he isn’t running around or jumping he is singing or talking or playing. So to see him just lay on the sofa is so strange, although I secretly like the quietness of the house when he is like this. When I told him he wouldn’t be able to go to soccer he panicked. He was up off the couch trying his best to walk around and show me he wasn’t sick. He enjoys soccer but more than anything it is now part of our Saturday morning routine. He gets up, plays, eats breakfast and gets ready for soccer. We leave at 10:10 and that is how it has to be! We can’t leave at 10:09 or 10:11. It is the same way with going to school. We have certain times we have to do things and we must leave the house by 8:30 or else! Oh and he tells me each minute how many minutes we have left until we are supposed to do the next thing. I want to pull my hair out most mornings. Anyway, it took me over an hour to help Jake work through the fact that he wasn’t going to soccer. He tried to bargain with me and at one point he said “I am going without you!” He proceeded to get his soccer gear and tried to dress himself. As he sat on the floor with his head laying on the couch he said “well, this isn’t going to work” and put his things away and got back on the couch with his favorite blanket.

Jake has a lot of OCD tendencies and his routine is his main obsession right now. Jake needs to know the schedule and needs to know all the details about how everything will “play” out. I know many kids need routine and thrive on it; Allie was and is one of those kids. But the difference with Jake is he shuts down if his routine becomes shaken in the least bit. The past few weeks his OCD/anxiety has worsened, almost to the point I’ve actually thought about seeing a doctor to talk about medications. If Jake’s routine is thrown off his anxiety is heightened and there is no talking him through it, there is no reasoning and there is no positive reinforcer that I can offer that will help. He paces around and has a hard time functioning on anything other than the issue at hand. To say it drives me a little crazy is an understatement.

If Jake is made aware that there is a change in his schedule it takes a while to help him process the change but he can eventually move on with the new routine. At school he has the help of his aides to guide him through sudden changes. I haven’t heard that this is a huge problem at school. I do think when he watches and sees what the other kids are doing he can process it a little easier than he can at home.

When a parent receives an autism diagnosis there is so much information to read and process. There is so much to learn about this disorder; it is truly overwhelming! And as your child grows you remember the stuff you read that you brushed aside because at the time your child might not have displayed another disorder. As Jake grows we find that there are more and more disorders that go hand in hand with his autism. Just when I think ‘I’ve got this in the bag’ something else pops up and I feel like I am starting over.

We do have our great days where everything seems nearly perfect and there are the extremely hard days. It’s a seesaw; always going up and down and rarely seems to be level. And that’s the spectrum for you…always changing and presenting new things. We’re always learning how to cope and get through whatever is thrown our way. We keep moving forward and working to learn as much as we can in hopes that our boy will be able to learn and cope as well.

As I finish this up Jake is still in the bed and I can’t help but be a little anxious. Sunday’s are the day Jake and John run errands together. One of the last things Jake asked me last night at bedtime was “what about Sunday, I need to go with Dad!” Hoping he feels better so his routine is “normal” for today 🙂

 

 

asd