communication :)

Jake’s verbal skills have improved dramatically over the past several months. I know I’ve talked about it before but I just can’t help but write about it again. A big part his progress is due to being in school and attending a social skills group. We also make him use his words more at home. Because Jake is delayed developmentally it is hard, at times, not to treat him as a 3-year-old versus the 6-year-old that he is. Over the summer I’ve worked with him a lot on using his speech instead of crying, self-help skills and cleaning up after himself. Like anything else we work on, it isn’t easy. But Jake is getting the hang of things.

This past week when we got home from school I was emptying Jake’s backpack and found his uneaten snack. I asked him why he didn’t eat his snack. Normally I would have to repeat this question and then go over to him, hold his hands and ask him to answer me. The usual response would be “I don’t know”. But this particular day Jake looked at me and said “I went to resource and forgot to bring it with me.” Inside I was jumping for joy, he answered my question simply and without prompting. Jake doesn’t go to resource every day, it is there for breaks as needed or if he needs help with a particular subject so his answer raised a red flag for me. I asked Jake “why did you go to resource?” he answered “I needed to play on the iPad.” Hmmmm, not sure what that meant so I thought I would ask another question “Jake, did you need a break from your classroom?” he said “No, Mrs. O. just told me I needed to go to resource. It was fun. Can I eat my snack now, I’m starving?” I have never gotten this much information out of him and even though I didn’t understand why he was pulled from his classroom to play on the iPad I was thrilled that Jake was able to tell me this on his own. Jake never cried or melted down, he just casually talked to me about everything that happened. It was the neatest and best feeling I’ve had in a very long time. We had a real conversation about his day. Wow!

Too many times we think because our kids are playing or being quiet they are not paying attention to their surroundings. This is especially true for our autistic children. I’ve been guilty of this a time or two but Jake is always paying attention. He is processing what is going on around him, what is being said and storing that information. If you have a teenager then you know this to be true as well. My 17-year-old daughter will have her ear buds in listening to music and many times I think she isn’t paying attention or can’t hear me. But she is listening to everything. I know it is different but the ending is the same, she can hear all that is going on around and just because she isn’t making eye contact or a part of what’s going on doesn’t mean she isn’t hearing and processing it all.

I have learned a lot about patience during this journey with Jake. I have learned to keep working and not to give up because there will come a time when all that is taught comes together for him and all of a sudden it’s like a volcano erupting. It isn’t easy but the result is worth every tear shed and every frustrating moment.

 

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I know what your’re talking about ūüôā

P.S. Jake is going to resource each day, we’ve adjusted that, to¬†work on his handwriting. He wasn’t just playing on the iPad for fun, he was actually working (ha). His resource teacher assured me he wouldn’t miss snack again and felt horrible that he missed it on that day. I love the staff that is working with Jake and the school itself!!

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overwhelmed

This week has been a little overwhelming. Jake had a good week at school. No notes sent home and no evidence of any behaviors. As far as I can tell he’s doing well. The only “negative” (and it’s not really negative) was that Jake is having a hard time staying seated. Jake has to constantly move. Even at home I have a difficult time getting him to sit at the table for dinner; sitting to do anything is extremely challenging. Jake’s OT, teacher, aides and resource teacher give him the tools to help him sit a little longer. He told me the other night “I can’t sit, it hurts”. Not sure what that means and trying to ask him to explain doesn’t get me anywhere. I hurt for my boy. He does his best to hold it together during the day and by the time he gets home from school he is exhausted. He doesn’t want to talk, he doesn’t want to do anything but lay on the couch or play quietly with his toys. It’s hard because I want to interact with him but when he is this exhausted the best thing for me to do is to let him be.

The past couple of days we have had some partly cloudy weather and although he doesn’t cry or meltdown anymore he is so tense he has difficulty functioning. He paces and constantly looks out the window. I find myself getting stressed when I see that there will be clouds or rain. I’ve tried talking to him about the weather but he doesn’t want to hear my words. He told me the other day “too much words and talking, I need quiet”. At least he can tell me that. I let him get the local weather app on his iPad and that seems to help a lot. Because he is so anxious he has been getting headaches nearly every night. I can’t even imagine what his body is going through when we have even a little bit of cloud cover. With every noise his body stiffens and he asks “what’s that”. He prefers to have his iPad and hide under the blanket. The only thing I know to do at this point is to pray.

This past Thursday, John and I went to Jake’s school for curriculum night. As I sat and listened to his teacher talk about all the things he would be doing this year I felt the need to hide. The academic’s won’t be to challenging for him but all the writing that will be expected of him sent my heart racing. Jake has great difficulty holding a pencil and writing. We have been working on this for a very long time¬†and although we have seen great improvement he is not where he needs to be. Jake has low muscle tone which makes holding a pencil difficult for him. I mean he can hold it but he has little control. He can write all of his uppercase letters and some lower case but it is hard work for him. He concentrates and by the time we are done writing two or three words his hand is cramping and he often tells me his head hurts.

Jake has made tremendous progress but it seems (as with most kids) when he reaches one achievement¬†another is waiting to be reached. The way it seems to work for us is that the next task¬†is even more¬†daunting than the previous. It is so hard not to get frustrated with whatever challenge we are facing at any given moment, it is hard not to want to give up and it is SO hard to see the child you love so much struggling with something that seems “easy”.

There are so many things I just don’t understand and I’m at the point where I just accept it (whatever “it” is) and help Jake the best I can. But not understanding is the hardest part for me.¬†I want to know why. Why won’t he eat the exact same yogurt he has always eaten even though the character on the package is different? Why are the clouds all of a sudden “scary”? There are a lot more “why’s” I find myself asking. I guess if I know¬†the “why” then I’ll understand and be able to help him work through whatever obstacle we are facing. I think this has been the hardest part of being an autism mom. For me, it’s like going into a dark room where you can’t see. You fumble around until you find the “thing” that you need but sometimes it is trial and error to find the right “thing”. Tiring is the best way to describe how I feel.

I’m sure we’ll work through this, we always do. But how long will it take and what will be the next “thing”?

For now, I’ll be with Jake; if you need me. We are on the couch with noise reduction headphones on, hiding under the blankets waiting for this to pass ūüôā

 

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Jake is under here with his iPad, headphones and weighted blanket hiding from the clouds

 

1st Grade!!

Jake had a great first week of school! Each morning he couldn’t wait to eat, get dressed and head out the door. The first day of school I walked with him to his classroom and he was all smiles. We saw his teacher and Jake ran to her door. He walked in, looked at me and said “bye mom”. It was great! Every morning after that first day as we would pull into car line Jake would smile and say “I love school!” Any nervousness I had before that first day or during the week was put away quickly when I thought of his smile.¬†

The morning of the first day of school it was dark, cloudy and rainy. Several months ago, what seemed like out of nowhere, Jake became afraid of cloudy weather. He becomes so anxious and nervous. He has to put on his noise reduction headphones, weighted blanket and then another blanket on top like a fort so he can’t see the clouds. And if it rains or thunders Jake screams and cries. I don’t remember an incident that triggered this, it seems as if one day he was fine with the clouds and the next he panicked. Before Jake woke up I saw¬†the clouds and the storm that was to come through and it made me so nervous for him. I wanted his first day to be as stress free as possible. As the rain began to fall I didn’t know if I would be able to get him out the door. As soon as Jake woke up he looked out his window (something he does every morning) and began to cry. He paced around the house and kept looking out the window and checking the weather on his iPad. Finally I was able to get him on the couch with all his gear so he could relax. He stayed like this for 30 minutes and the entire time I prayed the storm would pass. After 30 minutes Jake got off the couch, looked out the window and smiled. He said with a huge smile “the storm is moving, I’m ready for breakfast”. I was so relieved and by the look on Jake’s face; he was too! We were able to get to school on time with little to no anxiety. Thank God!

It’s hard for me sometimes. I want to protect Jake and not let anything that causes him anxiety come our way but, like the storms, I can’t. All I can do is ride it out with him and pray that it will be over soon.

 

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1st day of 1st grade ūüôā

 

 

All in all both kids had great first days of school. My only daughter started her last first day of high school. She was super excited to finally be a senior! And because her school started later that day I was able to grab some pictures of the both of them.

 

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My senior and 1st grader ūüôā

 

Praying the rest of the year goes as well as the first week!!

Oh and because I’m super proud of my daughter and all of her hard work; this is one of her senior pictures ūüôā

 

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the kid

Have you ever looked at your child and it seemed they grew overnight? Yesterday was one of the days for me. I looked at Jake and all of a sudden he looked bigger, more mature and acted like a kid instead of a baby.

I don’t miss the baby or little boy he once was; I mean there are some aspects I do miss but in general I really don’t miss a thing. The first 6 years of his life were hard. He cried and I didn’t know how to help him. I felt inadequate and helpless. As a parent those have got to be the worse feelings ever. I didn’t know what to do or how to help him. From the time Jake was 19 months until he turned 5 we spent countless hours in therapy and working with Jake at home. I do not miss all of those therapy days, they were long and hard on all of us. As I think back it makes me so tired. I often wonder how I did it all. Now it feels as though those years went by like a flash.

These past 6 months have been the best yet. Jake is able to tell me his wants and needs. He still cries but I can get him to use his words more quickly. He is able to express himself and better yet, communicate with me. Jake plays with his toys independently and pretends!! We are able to go most anywhere and he is pretty happy. 

Don’t get me wrong, we still have our challenges and we still have those days where I want to hide and not deal. There are too many days where Jake has trouble listening and following the simplest¬†directions. As soon as we “conquer” one thing a new challenge arrives. There are still the unexpected meltdowns and situations where I think he will be okay but isn’t.¬†Finding a solution can be challenging at best.¬†

We all have our good and bad days. But for now the good tends to outweigh the bad; thankfully!

 

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Jake likes to take selfies ūüôā

schools starts on Monday

Yesterday, Tuesday, Jake registered for the new school year; 1st grade! Registration day is always a little hard for my boy. It’s too loud, too many people and even though he knows this is his school it is unfamiliar due to the crowd. We have to stand in a quick line to get our paperwork and Jake stands with his hands over his ears (should have thought to bring his headphones). He continually says he wants to leave. He sees familiar faces but doesn’t want to make eye contact or speak. We finally got our paperwork and walked to the first grade hall and he felt much better. It was quieter with fewer people. He feels more relaxed¬†and the anxiety is gone from his face. Jake got to meet his new teacher and explore his new classroom. Overall he did well but I couldn’t help but notice the other kids walking around with ease. It’s not that it upset me but what I want for Jake is to have less anxiety about these types of situations. I really hate that it is so hard for him. If you were to put your hand on his heart you would feel it racing. His great smile isn’t there, just a look of concern. Allie and I continued to reassure him that we would be done soon and everything would be okay.¬†

Later that night I asked him if he liked his new teacher and he said “YES!” I asked him if he wanted to go to school and he smiled this huge smile and said “YES, I just LOVE school!” That statement alone lets me know he will be okay. We may have some struggles but overall he loves being at school so much I think he will be fine.¬†

As opposed to years past Jake picked out his backpack and lunchbox. He liked buying new clothes which is something he usually cares less about and he loves his new shoes. One thing we are both excited about is that he won’t have to wear his braces (AFO’s) during the day, he only needs to wear them when he sleeps. Since he is used to wearing the braces during the day I thought he might have a hard time with the adjustment but he didn’t. He was happy to put them on at bedtime and repeated to me “I can wear any shoes I want to school!”

So this year I will have a first grader and Allie will be a SENIOR!! Be still my heart. It’s an exciting year for my girl. She’s had her senior pictures taken, she’s working on her college applications, she has her last high school class schedule and is ready for her last first day of HS!!¬†

I’m ready for both of these kids to get back into their routines and¬†I am ready for a little free time myself ūüôā

 

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¬†“Do not be anxious about anything¬†but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”¬†Philippians 4:6-7