ice week

This had to be the longest week ever! It started out fun but slowly became frustrating. Out of the five-day school week the kids went to school one day. Now, I am normally that parent that loves it when school is out. I really like the laziness of the day and the time with the Jake and Allie. But this week tested my patience. When the kid’s school districts closed school on Friday I was instantly tired and to be honest not too happy.

Last Sunday John went to Nashville for work. Allie, Jake and I went to Nathan and Kara’s house for a family get-together. I was a little nervous about going to Nathan’s as they have a really big dog and there were going to be lots of adults. I knew it would be a crap shoot; never knowing how Jake will do. I found myself playing out different scenarios in my head before I let it go. The worst thing that would happen is we would leave earlier than we wanted. Jake was super excited go to see his brother and soon to be sister-in-law. Jake was a little tense going in the front door. He heard a lot of voices and I could feel his heartbeat quicken. The unknown was scaring him. I picked him up and got him inside and he was fine after about 10 minutes. The dog, Jax, scared Jake at first but because we recently got a new dog ourselves he quickly became okay with this sweet dog that was nearly as tall as him. Jake lasted about an hour and half; which is what I had hoped for. Overall Jake seemed to have a good time and behaved.

Monday came and we were hit with a lot of ice. Schools were closed. It was a great day with the exception of Jake coming down with a nasty cold. But because he didn’t feel well Allie, Jake and I laid around most of the day staying warm.

Tuesday, another ice day. Jake was feeling a tad bit better and starting to test the boundaries. He didn’t want to go outside, he didn’t want to listen. He really wanted to do the opposite of what I asked him to do.

Wednesday, another ice day. Jake woke up feeling defiant and ready to test me at every turn. He didn’t like the outcome of his obstinate behavior but I warned him. I believe this day his iPad, Leap Pad and computer all had time outs. Time outs don’t really work for Jake. Almost always he goes right back to the behavior that sent him to time out. But put one of his favorite toys in time out; that will get him listening for sure!

Thursday both Allie and Jake went to school. I think I did a little happy dance 🙂 Jake didn’t have such a great day. He had a tantrum that led to a meltdown that lead to a phone call from his special needs teacher. The best part of this day was that John came home from his trip!

We wake up Friday morning to yet another “snow” day. I was not excited about this at all!! Jake spent a good part of the day throwing tantrums, melting down, his favorite toys went to time out and by noon he told me he needed a nap! Thank GOD!!! Seriously, I was never so happy that he wanted to take a nap. He actually went to sleep, something he never does unless he is sick.

Saturday more of the same behaviors. I am not sure if he just doesn’t care or doesn’t understand or doesn’t think I will stick to what I say I am going to do. I am pretty sure he understands. I think he really wants to test me to see what will truly happen. It is almost like a game. I tell him don’t sit on the desk, he looks at me then sits on the desk. I walk over to him and take his iPad and it goes to time out. Jake screams and pitches a fit. I have him sit with me on the couch under his weighted blanket. He calms a little. Next thing I know he goes back to the desk and attempts to sit on it again. I feel like he is going through the terrible twos; again!

Jake has sensory processing disorder and much of the time this plays a huge role in his behaviors. If his body isn’t regulated he has a hard time following directions. I am not making excuses for Jake’s behaviors, please don’t get me wrong here but it does help me to understand better why he does certain things.

For instance, if Jake wakes up being defiant and I see him struggling like I have this week. I give him a deep pressure massage, turn down the lights and let him listen to a classical music CD (QuickShift) that helps regulate his sensory issues. After all of this you can see his body relaxing. You can see the focus coming back into his eyes and then he can make better choices. I don’t always jump to these techniques first. Sometimes I let the behavior play out and then I resort to the strategies listed above. I try this tactic to see if I can get him to regulate on his own. But more times than not he needs extra help to wake up his senses, so to speak. On school days I start with the massages and let him listen to his “music” in hopes that it will help him while at school.

At times it is hard to know or see the difference from bad behavior or sensory related behaviors. But for the most part I can tell. Jake has found his voice and has realized that he can use it to say “no”. He has become aware that he doesn’t have to do whatever I ask him and he can run from me, drop to the floor and cry. He tests the limits almost daily. It is a struggle. But those times where I know and I can see he can’t help it; that is when it hurts. He has told me in the past that he can’t stop. He has come to me and asked me to massage him or he has requested his weighted blanket so he can calm down. We both are slowly figuring all of this out. Jake is slowly getting to that place where he can tell me when he needs help.

This past week will be one I won’t forget for a while and that’s okay. I can look back and see what I did wrong and what I did right. As I’ve said before…we are all constantly learning.

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 Proverbs 1:5 “Let the wise listen to these proverbs and become even wiser. Let those with understanding receive guidance” (NLT)

 

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forever learning

One of the things I loved most about my dad was his sense of humor. He was witty and if you listened carefully he could make you laugh. Valentine’s Day for us always meant our favorite candy and a card from the Valentine Chicken. My dad used to say how every holiday has a character and cupid is creepy so he invented the Valentine Chicken. All the cards I received over the years were from the chicken.

On Valentine’s Day I went into Jake’s room and said “good morning, Happy Valentine’s Day!! Jake said “please stop saying Valentine’s Day!” I said “I guess I get to open your gift.” He stopped what he was doing and looked at me. And then I made a mistake. Yep, I know many of you think I am close to perfect (ha-ha) but I’m not; sad but true! I still goof up and say things to Jake that I wish I could take back instantly. So here it is the day of love and I scare my kid 😦 I said “let’s go see what the Valentine Chicken left you!!” As soon as the words left my mouth I regretted them! The look of fear came across his face and he said he didn’t want to go in the den. He didn’t want a chicken and he wanted the chicken to leave! He was pretty adamant about it! I promised and tried to reassure him that I was joking. “Buddy, mommy was teasing. I PROMISE there is no chicken in the den!!” He hesitantly walked into the den and I showed him his gift bag. He ran away and said he didn’t want a chicken. He told me to open his gift. Geez, seriously! Sometimes I just need to be quiet. Finally, after some coaxing, he opened his gift and loved his present!

It seems I slip up quite often. Idioms or jokes are hard for Jake. He doesn’t understand them and because of this he gets upset. I do my best to treat him as a typical child and play and tease him the way I probably did with the others at his age. But because of Jake’s delay’s I have to be careful. We often talk about jokes and teasing and he is learning what idioms are but like everything else it will take time.

I try not to beat myself up too much when I slip and scare my boy. I often think ‘I should know better’ but there are times words just come out and there they are; hanging in the air.

This past week Jake lost his second tooth. He absolutely hates loose teeth and he told me that he wanted to go home so his daddy could take all of his teeth out. Jake has lost a total of 5 teeth (1 came out during a fall when he was 18 mths old). When I noticed his tooth missing I asked him when he lost it and where did the tooth go. He didn’t answer. He had been at OT and PT so I called his therapist’s and asked them if they noticed or knew when it came out. They didn’t because Jake didn’t mention it to them. His OT went into the gym and found it in the mat where Jake had played. I told him if we could get the tooth the tooth fairy would come and leave him a small gift. Money doesn’t mean much to Jake. Just the other day I saw him throw something in the garbage and asked him what it was. He said “it was a dirty 5 dollars and it needed to go in the trash!” Sure enough Allie’s 5 dollar bill was in the garbage.

Back to the tooth fairy. We have talked about the tooth fairy in the past and he has cried. He cried when I mentioned to him about this tooth. I told him the tooth fairy wouldn’t come in his room but would leave a gift on the table. He told me “pllleeeeaaassseeee don’t let the tooth fairy in my house!! I don’t want a gift. I don’t want my tooth!” The next morning I had forgotten about that conversation and when I got Jake out of bed he wouldn’t go in the den. He said he was scared. I asked him why but he couldn’t or wouldn’t tell me. I picked him up (not an easy task) and carried him into the den. As he clung to me I could feel his heart being a mile a minute. I remembered our talk the night before and assured him there had been no tooth fairy or gift or money. He cautiously looked around and when he saw there wasn’t anything for him his heart slowed down a little and he was able to go and play. Later that night I asked him if the tooth fairy could come and leave him something. Again as soon as I mentioned it I knew I shouldn’t have said anything about the damn tooth fairy. But I wanted to be sure he understood and really didn’t want anything. As soon as I said the words he cried and started a mini meltdown. Seriously, you would think I would learn to not say anything more.

All of this being said there are times I just want to know what he is thinking and feeling. I ask questions to make sure he understands. Many times I can’t read his facial expressions. He either doesn’t know the words to use, doesn’t understand or maybe just doesn’t want to talk about it. It leaves me feeling unsettled.

This whole journey is a learning experience. We often have to keep trying new tactics. What worked one day might not work the next or ever again. We learn right along with Jake much of the time. It is often mentally exhausting because I don’t understand and I want to understand so desperately. I often think that if I could just get where he is coming from and comprehend his way of thinking then I could help him better. But the fact of the matter is I don’t. I (we) may not ever grasp it in its entirety and that has to be okay.

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the birthday boy

“This was the best birthday ever!” Jake said this to me at the end of his day. I was tucking him in, later than normal, and the smile that radiated from his sweet face was beautiful. I swear I wish I had a camera with me that could capture these quick moments before they are gone. As Jake laid down to hear his story he began to tell me about his day. 

“I had a party at school today.” Jake began. I said “That was fun and so nice so nice of Mrs. P & Mrs. K, wasn’t it?” he said “I got two presents, a transformer and something else but I need to think about it and remember later. I am too tired to think, okay mommy?” I gave him a tight squeeze and told him we would talk about it again tomorrow. As I finished up his story his eyes were heavy but he wanted to talk about his birthday some more; I don’t think he wanted it to end. I told him that I had fun having lunch with him at school. He smiled and stared at me. I wanted to ask him what he was thinking; I wanted to ask him so many things but didn’t. I chose to sit with him in the quiet for a moment and let him reflect. But I so wanted to know what was going on in his brain. As I tucked him in one last time he looked at me and said “I love you and I love my birthday.” I gave him one more squeeze and one more kiss and watched him drift off to sleep. My heart felt so full at that moment. I couldn’t have asked for a better day for my boy!

Jake had specific instructions about his birthday. He didn’t want a cake or balloons and definitely no candles. He said we could sing to him quietly. He told me he just wanted a “glass” (glazed) donut and presents. He made sure to tell us this at least a hundred times before his birthday. I was a little anxious about his birthday. I could sense he was apprehensive and wanted to make sure there were no unexpected surprises. I assured him that there wouldn’t be a cake or candles. I did tell him there might be just one balloon and he didn’t seem as concerned about that but more so that there would be candles. John, Allie and I reassured him over and over that he would have a great day and we promised he would just have a donut with no candles.

When Jake woke up on his birthday I went into his room and asked “what is today?” He said “I do not know.” I said “It’s your birthday!” A huge smile came across if face and he said “Oh, yea…I forgot.” He bounded out of bed and went into the den where I had hung a Thomas the Train banner that says Happy Birthday. I wasn’t sure if he would like it or not considering there have been times in the past he hated it and made me take it down. But that morning he smiled and pointed out James, Percy and Thomas.

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On our way to school I asked Jake if he would wear the birthday crown. He told me in a panicky voice “NO!! I do not want to wear a crown!” I said “Okay, buddy. You don’t have to wear one if you don’t want to but it might be fun.” “Nooooo, mommy! No thank you. I do not want to wear a crown!” Jake was pretty adamant about the no crown thing.

When it was Jake’s turn to get out of the car his aide and one of his therapists came to open the door and told him “Happy Birthday!” I was nervous for a minute but he smiled this huge smile! Jake seemed excited and was ready to go!

You see in the past birthdays were difficult for Jake. The “birthday song” was hard as were the decorations, candles, too many people and the cake was just more than he could handle. We spent many a birthday reassuring him that birthdays were fun and exciting. But for the first few years he just couldn’t do birthdays. We would celebrate everyone’s birthday anyway and allow Jake to hide or cover his ears as needed. We were constantly reassuring him and letting him know what would happen next; we just never knew what might send him over the edge. One birthday he would be fine and the next he would panic. For a time, birthday celebrations were not fun. Thankfully, over this past year he has slowly started to enjoy birthdays.

As Jake’s day progressed I received pictures from his aide and special education teacher showing me he was having a blast! He had a party in the special ed class with a song, presents and his favorite; glazed donuts! Jake was the line leader for the day in his kindergarten class and seemed to enjoy being the center of attention. And guess what? Jake wore his birthday crown!

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Allie and I took Jake McDonald’s for his birthday lunch. As he came into the cafeteria I have to say, he was too cute! He was wearing his crown and had the biggest smile! He enjoyed waving to his friends at the nearby table. It was such an incredible feeling for me to see him so happy. He loved having us at lunch (another first) and we loved being there with him on his day!

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Around 2:30 I got a text from his aide letting me know that Jake said his tummy hurt and wanted his mommy. He was close to a major meltdown. I decided to go and get him from school so he could decompress from all the excitement. It took a while but overall, he handled everything beautifully!

John, Allie, Jake and I went to dinner then came home for presents and a birthday donut with no candles. We did get him a balloon that he hated at first and wanted us to put it in the trash. But after a while he ran and got the balloon from Sissy’s room and said “I like my balloon!” Jake had so much fun opening all of his gifts and let us sing ‘Happy Birthday”!!

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We opted not to have a party with friends; Jake had said “I do not want a birthday party, pleaaassseee!!” Maybe next year 🙂

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I would have to agree with Jake that this was the best birthday ever! He was full of smiles, enjoyed the attention and overall was in a great mood. We are so thankful for the staff at Jake’s school for helping him enjoy his birthday and for making it a big deal.

This day will be remembered by all of us for years to come. It was a day full of firsts for my boy. He struggled some but got through it and was able to let us know what he did and didn’t want; I’m really proud of this 6 year old!!

My hope for years to come is that Jake will remember how much fun he had on his 6th birthday and will be open to parties, more balloons and candles!

6 in three days

It is hard to believe Jake will be 6 on Wednesday. We all say it but it is so true; time flies!

As moms, I think we all look back to the day our child was born. We think about how much they have learned, progressed and grown over the course of the years. I do it with all my kids and especially Jake. To think back to his birth and the years that have followed; it went crazy fast!

When he was really little I so wanted to hear his voice speak to me, see him play, have him imitate me, let me read to him but most of all I wanted to hug on this boy. Fortunately, I hear his voice daily, he is playing, he can imitate most anything, and he loves for me to read to him and will very rarely let me hug him. I love all of this especially the occasional hug; I’ll take what I can get 🙂

Jake is halfway through his kindergarten year, it has been interesting and a learning experience for me. Jake adjusted pretty well. It took time but once he got into the new routine he has done well. He now plays with his peers, he can answer questions about his day and the work he brings home is always improving. There are still areas of concern but for the most part he is doing fantastic. It is more than I could have asked for.

Progress comes in many forms. Sometimes they are really big moments and there are times where you have to be paying close attention to really see them. One of the biggest moments this past year was hearing Jake answer questions. The who, what, when, where and how questions. I remember we were eating and Allie asked Jake “who did you play with today?” he wasn’t sure how to answer so Allie asked him again and again. Finally he looked at us and told us the name of someone, we didn’t give him choices he just answered. We were all so excited and wanted to ask him more questions. Jake can handle one or two before he shuts down but this was huge. We can now ask him if he had a good day at school, if he played outside or who he sat next to at lunch and he can tell us. This past year Jake has also learned to peddle a bike and write his name (without help).

Another small but really big moment; Jake is willing to touch different textures. Just the other day he played with Flarp. I know that doesn’t sound as cool as writing his name but he touched something slimy and didn’t pitch a fit or cry.

There are many more moments of accomplishments but the awesome thing is, we see progress every single day!

For the first time, Jake is excited about his birthday! He is so excited that he will have presents. The only thing he doesn’t want is a cake but he does want a glazed donut with no candles. We asked him if we could sing to him and he said he would think about it. But one of the best gifts that he is actually giving me is letting me go to school on his birthday and eat lunch with him. I ask him every week if I can come and have lunch with him at school and he almost always cries (with tears) and tells me “NO! School is for Jake not mommy!!” I keep asking in hope that one day he will say yes. Last week I asked him if I could come and have lunch with him on his birthday. Jake said “let me think about it and tell you on the 28th, okay?”  On the 28th I asked him again if I could come have lunch with him on his birthday. And guess what Jake said??? He said, “I think that is a great idea!” I asked him again a bit later just to make sure he understood my question and with a big smile he said “that will be fun!” I keep praying he doesn’t change his mind. I know I could just show up and be there anytime, but I really don’t want to put him through that anxiety. This is a battle I choose not to explore. I have been there once this year during lunch but he chose not to sit with me and that was really okay. I had been at the school that morning for something so I stayed on for lunch. Although it wasn’t planned he didn’t seem to mind be being there as long as he could sit with his peers. I’m really hoping he will choose to sit with me this time. Maybe the McDonald’s I bring will be a substantial positive reinforcer 🙂

Many times I find myself hoping for the best but preparing for the worst. In the past I have let my expectations get the better of me. I want to see the boy his teachers see at school. I want to be a witness to his good choices. I want to be a part of his school life. The boy we see at home at the end of the day is different. He is tired, sometimes cranky and wants to be left alone. He doesn’t want to be talked to or hugged on; he just wants to be by himself. It usually takes him about an hour to unwind after school. Some days he is great and other days he just cries. He has had to hold his “stuff” together all day and by the time he gets home he needs that space to let it all out. I know Jake isn’t the only child, typical or non-typical, that needs this. The difference with Jake is that it takes longer for him to bounce back and to find his calm. If seeing the meltdowns at home allows Jake to have a great day in school; that’s okay by me!

I am really proud of Jake and the headway he has made. Jake have proven to us, time and time again, he can do anything that is set before him. He has shown me how to be a better person. Even though he is just shy of 6 years old, he has shown me more than once that hard work pays off. If this boy can succeed then anyone can with a lot of hope and determination.

I can’t wait to see what the next year holds for Jake!!

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 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit Romans 15:13