Christmas 2015 = Success!!

From the time we got our tree until Christmas day, Jake was all smiles and so excited about Christmas. He loved all of the festivities at school, he loved all of the decorations and was excited about the presents he might get from Santa. The only things that Jake didn’t like was the Elf and the idea that Santa was going to come into our house. The elf moved a couple of times and Jake did NOT like it one bit so he has hung from our chandelier pretty much the whole month of December. One of the mistakes I made was calling Santa; I thought if Jake heard his voice he might get excited and be a little more open to the idea of Santa coming to see him. Well, this was not the case. Jake cried and begged me to tell Santa not to come into his room. He only wanted Santa by the tree and to eat the cookies and go home.  

Christmas Eve my family came over and he was all smiles. Before my family arrived Jake said “I can’t wait to see my grandparents and Ella!” He said hello when people spoke to him; they aren’t strangers like they have been in the past. Jake has known everyone since he was born but each time he saw them it was like meeting them for the first time. On Christmas Eve he knew them all and remembered who they were and could call them by name. For years we have worked on this. We did our gift exchange where Jake waited patiently for his turn with this incredible smile and look of excitement. That day I couldn’t take my eyes off of him, watching him was a gift in itself. All the years of work, the flash cards, the pictures…everything came together on Christmas Eve for Jake. Not to sound corny but for me; it was a miracle. You know, I always felt it would click one day and I always knew he was retaining what he was being taught but to see it unfold right before my eyes was something I can barely describe. That night Jake couldn’t wait to get to bed but made me promise him that Santa wouldn’t come in his room. I promised him that I would let Santa know and he settled down a little but seemed tense. We sang our songs, read stories and Jake was asleep pretty quickly. The next day Jake would later tell me he was so scared and hid under his blankets all night; partly due to the storm and partly scared Santa might come inside his room. Poor kid woke up drenched in sweat which is why he isn’t in cute Christmas jammies in our pictures. But hey, that was the only time he was stressed throughout the entire holiday!

On Christmas morning Jake couldn’t wait to come into the den to see if Santa had been to our house. He ran in with a huge smile and immediately started playing. I don’t think the smile left his face the entire day. He couldn’t wait to open presents and go through his stocking. He waited for his turn to open gifts and watched us as we opened ours. He was totally into everything Christmas! The best gift I received other than winning $100 on a scratch off was watching Jake. Remembering how on Christmas’s past he would sit there with a blank look on his face. Knowing how he would cry over anything, knowing he didn’t understand the whole gift exchange and watching him try to process it all was difficult at best. Seeing him so excited this year just made my heart feel so full and I couldn’t take my eyes off of him. I watched him as he watched his dad and sister open their gifts, he couldn’t wait to see what they got. I watched him as he opened his gifts. He is very meticulous about how he opens them and won’t read the box or look at the gift until every piece of paper is off his present. Then he would smile and shout out what the gift was and say in a deep voice “thank you Santa!” John and I would exchange looks and smile; tears filled my eyes and my heart was ready to burst. 

As Christmas day went on Jake played nonstop. At one point he looks at me and says “I am SO HAPPY!” Want to talk about a tear-jerking moment; seriously he shared on his own how he was feeling and the words alone…well let’s just say they are in my memory box forever.

Jake said countless times “this is the best Christmas ever!” This was his 7th Christmas and I would have to say that this was by far his best Christmas!!

 

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 “For unto us a child is born, unto us a son is given…” Isaiah 9:6

 

 

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a smile makes a big difference :)

Our journey with Jake is my way of recording things I might otherwise forget. I write for me and one day Jake. At some point I want him to see the struggles he has overcome and all the progression he has made.

Life on the spectrum is hard. Jake is higher functioning which can be a good thing but it can be more challenging in some ways. Jake has no tell-tell sign that he is autistic. Generally, when we are in public he doesn’t stand out in the crowd unless a stranger speaks to him, the noise gets too loud or he can’t find his words and resorts to crying. But the looks I receive at times aren’t those of compassion nor are they inspiring to me as a parent. Just a simple look can break my heart, depending on what the day has been like. I feel as if I’m being judged as a bad parent because my almost 7-year-old, 70-pound son is crying. Other days I take it in stride and smile and keep going.

The other day I took Jake to get his hair cut. This is the second time we have had his hair cut at a salon and like most kids on the spectrum, Jake needs it to be the way it was the first time. The first time we were there Jake played at the train table while the stylist cut his hair. She was fine with it and Jake did better than I thought he would. The owner has a son who has special needs and he talked to Jake and helped him feel comfortable. As we walked into the salon this time a different stylist saw us and told Jake to sit in the chair. Jake pointed to the train table. She quickly said we’re going to sit here and then you can play with the trains. She didn’t say it mean but there was no smile (something Jake looks for when someone talks to him). He looked at me, pulled on his fingers and almost cried. The owner remembered me and got down to Jake’s eye level and asked him if he wanted to have his hair cut at the train table, where Jake quickly replied yes. I told the stylist that Jake is autistic and in order for him to be comfortable he wants to do the same thing he did last time we were here. She obliged. As I was talking to Jake trying to help him find his calm her demeanor softened a little. She wasn’t mean or ugly at all but I think it finally clicked with her that even though he looked typical he wasn’t. The owner and his 6-year-old son began talking and playing with Jake. The stylist listened and worked with Jake to accommodate his needs. As the hair cut went on I felt better. I don’t know this stylist’s story; she could be fresh out of school or she may never have worked with a kid like Jake. But she listened and followed my lead and helped Jake the best she could. In the end she was smiling which made Jake feel better.

Sometimes I am guilty of assuming that once I mention that my son is autistic people will understand. The thing is if another person doesn’t have a personal connection with autism they don’t understand. Some might not have a clue what autism is or what it means. To look at Jake, he looks “normal” to see him play he seems “normal” but once he is uncomfortable then the differences show up.

Jake and I were at the grocery store and he gave his car to the check-out clerk. She scanned it and gave it back to him. He stood there looking at her like why are you giving this back to me? He walked around her, let the car go down the belt thing and stood there waiting. I told him not to go back there with her as she had work to do. He didn’t say anything. She looked at me and I told her Jake was autistic and was trying to process what to do next. She smiled and asked him what he wanted to do next. He looked at her but didn’t speak. She asked me if he could talk and I said yes. She again smiled at him and asked him what he wanted and he pointed to the bags. She said “your mom says you can talk; can you tell me what you want?” He smiled and said “a bag please”. She smiled at him, gave him a bag and pointed where he could sit and wait for the check out to be done. She also asked me if I thought he might try to leave the store and I said at one time he would have but now that he is older he wouldn’t. She smiled and said “I’m sure that is a relief”. I thanked her for her kindness and she said “sometimes kids just need a smile and a minute to understand things going on around them.” She got it. I didn’t have to explain what autism was, she knew. As we were leaving Jake told her Merry Christmas and her face really did shine with happiness.

The struggles Jake faces can be difficult. My struggles are much the same. I struggle with things like ‘am I being too sensitive, am I reading their facial expression correctly, is my son being defiant or does he not really understand, is this typical behavior or autism?’ A lot goes through my mind too and it takes me some time to figure out what is what with Jake. Like Jake, I look for that comforting smile, the small gesture that someone doesn’t see my kid as a brat but a kid that needs an extra minute or an extra hand to help him through a situation. Before Jake I didn’t know what autism was; a crying kid annoyed me, a kid running around like crazy at a restaurant annoyed me more. I didn’t know about disabilities that were invisible. Now I do and I have learned to be compassionate to anyone with a child. I don’t know what their struggle is just like they don’t know mine. Sometimes the smallest gesture goes a long way.

 

minionsmile

last week of school; quick review

This week has been busy, wild, crazy…it always is the week before winter break. Jake is bouncing off the walls, there are teacher gifts to be wrapped, fun activities at school and the much-anticipated party at school! I’m tired but Jake isn’t (always the case – ha!)!!

In the past Jake has gone through the motions. We’ve told him what to expect each day and he participated but there wasn’t a lot of excitement in his eyes. I remember last year at the kindergarten party he went to each station and played the games and seemed to have fun but to me he seemed to be trying to process everything going on around him. Even though I wanted to see the excitement that I did this year; he was having fun, he was excited but in his own way.

Monday was reindeer day and Jake’s class was told to dress up if they wanted too. That morning Jake wanted antlers and I had none. I went through the house and made some super quick and then he melted down. He didn’t want them in his bag, he didn’t want to wear them and wouldn’t even look at them. For a brief second I wondered if he would have fun this week but let it go. I knew Jake would have fun and antlers or no antlers wasn’t going to make or break the week. Jake made sure the antlers stayed on the table as we walked out the door. Peace came over his face and he was happy again. Jake’s aide sent me this and told me that Mrs. S. had brought antlers for the class and he promptly put his on and wore them the entire day!

reindeerantlers

Tuesday was Gingerbread boy and girl day. They decorated gingerbread cookies and got to eat them for snack. I was told Jake ate every bite of his! This shocked me; he doesn’t eat unfamiliar foods, he just doesn’t! But he ate every bite of his and enjoyed the icing and candy (Jake doesn’t eat candy either). I was so happy to hear this! That night I asked him about it and he told me “it was good and we had fun”.

gingerbreadcookie

Wednesday was snowman day. So I made him a snowman hat to wear. He was excited to take this to school and wore it all day!

snowmanhat

Thursday was Jake’s holiday party and he seemed to have the best time! This smile never left his face! He made a snowman out of powdered donuts and as you can see he loved them!

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Friday was a half day!! After school I took Jake for lunch at McDonald’s then we got his hair cut. Once we were home we both crashed on the couch!!

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It was a crazy busy week but the smile on my boys face each day when he got in the car was priceless. The best gift I have been given this year is the excitement in Jake’s eyes, the smile on his face and how happy he is that it’s Christmas. This year he notices the tree, the presents and walks around singing Christmas songs. He has got the Christmas spirit 🙂

For those who are just beginning their journey or aren’t sure that their child will ever truly enjoy all the goings on of Christmas; just keep working and don’t give up hope. I used to have this image in my head of what I wanted Jake to be and had thoughts of how I wanted him to feel. Once I let go of what I wanted for Jake was when I saw that he has always enjoyed everything about Christmas but in his own unique way.

 

PS I’m so thankful for Jake’s aide and his teacher! They both work so hard to make sure Jake is taken care of, that he understands and helped him enjoy every part of this past week. Thank you MK for some of the pictures and for loving and helping Jake each and every day. Thank you Mrs. S. for your hard work and the love you have for Jake and the rest of your students. 

converstations

Me: “Jake did you have a good day at school?”

Jake: “No!” starts laughing

Me: “You didn’t; are you sure?”

Jake: “I had a great day! My clip was on green. I had fun. I played outside. Can we be quiet now, please?”

Me: “Sure buddy!”

Usually our car ride home from school is pretty quiet but this particular day he was smiling and talking. It is usually hard to get more than a few words from him but this day he let me know he had a great day. Conversations like this are becoming more frequent. I am able to hear how his day went without guessing or relying on his team to tell me what is going on while he’s at school. I love it!

Jake can still have some trouble finding the right words to use and he often resorts to looking at me, putting his finger to his mouth and saying “mmm”. The first few times he did this I didn’t know what he was doing; it was confusing. But now I know he is wants to tell me something and doesn’t know how.

Friday’s conversation went something like this;

Jake walks in the door with this look on his face, puts his finger to his mouth and says “mmm”.

Me: “What’s wrong buddy? John tells me Jake thought he was going to ride the real polar express train at school.

Jake bursts into tears saying “they wouldn’t let me ride the train; I’m so sad!” (Friday the kids wore their PJ’s to school and watched the Polar Express while having hot chocolate. We had told him what would happen that day but I didn’t think to say ‘you won’t be riding a train’)

Me: “It’s going to be okay. There wasn’t a real train at school, it was just pretend.”

He seemed heartbroken. I felt awful for him because I thought he understood everything that would happen at school that day. I assumed he “got it”! He didn’t.

I go in search of tickets for the Polar Express in our area. I showed him pictures of what the train looks like but when he saw that Santa was going to be on the train he started crying again.

Me: “Why are you crying?”

Jake: “I don’t like Santa. I don’t want to see him!!”

Me: “Ok, but Santa will be on the train. You can hide your eyes.”

Jake: “NO! Santa can’t be on the Polar Express!!” (In Jake’s defense, Santa isn’t on the train in the movie so he shouldn’t be on the real one either!)

Last week Jake was singing Santa Claus is Coming to town.

Me: “Are you excited that Santa is coming to our house to bring you presents?”

Jake stopped mid-song and looked at me. He was panicking. He said “I don’t like Santa!!”

I said “I know buddy. And that is okay! Do you want him to bring you toys?”

Jake said nothing.

Me: ” Can Santa bring you toys?”

His eyes were huge and he started breathing heavy. I pulled him onto my lap and hugged him tight.

Jake “I don’t want Santa in my room!! Lock my door so he can’t get inside! PLEASE!!!”

I assured him I wouldn’t let Santa in his room. He didn’t look like he understood the concept of Santa and Christmas Eve.

I asked him “What do you think Santa will do when he comes to our house?”

Jake: “He is going to leave me presents and try to hug me; I don’t want Santa to hug me or come in my room!” He runs off crying! I spent a few days reassuring him and going over every little detail of Christmas Eve. I was tired. I had thought he understood but again I assumed and assumed wrong!

When you have a child with autism you hope and pray your child will be able to talk and communicate. You long to hear those first words and then have those first conversations. Some children on the spectrum don’t have the luxury of being able to use their voice. We were there for quite a while and did our very best to prepare Jake for upcoming “events” so he would fully understand. I still do this but I guess I don’t go into as much detail as I should. He doesn’t like a lot of words so I try to use as few as possible in hopes he gets it. I have to remind myself that just because Jake can speak doesn’t mean he fully understands every situation and needs the help of social stories, pictures and minimal words.

I love that Jake is able to communicate. He can tell me who his friends are, who he plays with and who he sits next to at lunch. But what I don’t love and what I’m having to remember daily is that just because Jake can have conversations with me doesn’t mean he fully understands my replies.

Being a parent to a child on the spectrum is mentally hard. I have all of this stuff to remember; words have to be said in a very distinct way, no idioms allowed, extreme detail in one or two words and my face has to have a smile on it when I am talking to him. It’s exhausting at times. I make mistakes, I get angry and from time to time. I use idioms and then pay the price.

But as I’ve said before; I’m still learning. Sometimes the hard way and sometimes Jake shows me the way. As he’s learning from me I’m learning from him. It’s a bumpy road but I wouldn’t trade it for anything!!

Polar Express day 🙂

 

“Don’t be afraid, for I am with you.
    Don’t be discouraged, for I am your God.
I will strengthen you and help you.
    I will hold you up with my victorious right hand.” Isaiah 41:10

he’s always paying attention

Like most kids, the excitement of Christmas is affecting Jake. He can’t sit still, he is moving nonstop and his listening skills have decreased. I remember when the boys and Allie were little how hard this time of the year was for them. Just the mere mention of Santa or Christmas morning and they were bouncing off the walls! Jake is no different. He can’t wait for Christmas and cannot wait to see what Santa has left him under the tree.

This past week I started decorating and as I was hanging a few things Jake pointed out where they should go and he said “that’s where it’s always been so it needs to be hung in the same place, okay mommy?” Alrighty, not a problem for me. But what stopped me was his recollection of where decorations are hung and where we place our tree. In the past he has never seemed to pay attention to these details. In the past he walked by the tree without looking, he passed by the decorations that were hung and didn’t seem to notice them at all. But now that his expressive language is building he can tell me all the small details that he’s noticed. He remembers each toy he has received every Christmas and has pointed to the place where they were on Christmas morning. I never really doubted that he was unaware but it is so cool to hear him talk about things and confirm that he was indeed paying attention to the smallest of details; some that I didn’t even remember without looking at pictures.

One of the things I’ve been guilty of in the past is not thinking that Jake is paying attention because his body language tells me otherwise. I’m more aware of this now and I do know he is always paying close attention. Because he isn’t looking at me doesn’t mean he doesn’t hear, because he is playing when I’m showing him something doesn’t mean he doesn’t see. It is incredibly hard for him to stop, turn and look. It isn’t something that comes naturally to him. But he is stopping, looking and seeing. He is listening but not in the same way I do. He hears and sees all and if someone doesn’t know Jake very well they might think he is being rude and ignoring what is going on around him. Believe me he isn’t! We do work on using our body to show others we are paying attention and he will get there one day. He is sort of like Santa, he’s always watching, he sees and hears everything 🙂

The other day we went to get our Christmas tree. Jake was super excited about going and picking out the perfect tree. But when we got there his body was taking him other places, it was a little loud and a little overwhelming for him. He had fun as he was half smiling but I could tell he wanted to get out of there. Later that night at bedtime Jake told me he liked going to get a tree but it was too loud, “the machine hurt my ears”. They use a chainsaw to cut off the trunk of the tree. I told him that I agreed. Then he said “when I was a baby I cried, I didn’t like the loud noise!” Back then he did cry and we had to pretty much grab a tree and run. I told him “you didn’t cry at all this year” and he said “nope, I’m big now and know how to cover my ears!” Yep, he sure does!

I love seeing what was once so hard for him is now something he can manage. He knows exactly what to do and does it. This past Wednesday I took Jake to the dentist for a cleaning. He did better than in times past but having to lay there and have someone put their hands in his mouth was proving to be a bit too much. Jake got off the chair and started pacing and said to himself “just breathe Jake, it’s okay. Take some deep breaths and you’ll be fine.” He proceeded to take deep breaths and let them out. He walked back to the chair and laid back down so the dentist could finish looking at his teeth. I loved seeing the hygienist and dentist faces when Jake did this! Even though they work with a lot of special needs kids his dentist looked at me and said “would you look at that; so cool to see a kid calm himself down!” I too was impressed!

The point of all this is for those parents who have a child recently diagnosed with autism or for the adults who meet or are around a child on the spectrum; don’t underestimate the power of your voice. Our kids take it all in and over time everything that they have heard or have been taught will come out in ways you might never expect! Just because my son doesn’t look you directly in the eye doesn’t mean he can’t see you, just because his back is turned or he is playing doesn’t mean he isn’t listening. Jake is doing his best to process what you are saying, he is doing his best to not run away from your presence and he is most definitely trying to use all that he has learned over the past 4 1/2 years to produce expected behaviors. It is super hard for him but he is getting there in his own time and in his own way. 

 

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“Ears that hear and eyes that see — the LORD has made them both.” Proverbs 20:12 (NIV)