too many words

I am one of those people who like to talk. Throughout school I always got caught talking during class. When telling a story, I want people to experience what I experienced. I tend to give every detail from where I was, how I was standing, what the weather was like…you get the picture. It can take me forever to get to the point. Sometimes I will even say ‘to make a long story short’ then I laugh because the story is already too long!

When I talk to my kids about anything I tend to use too many words. I want to make sure they understand and get what I am saying as well as how I’m feeling. Whether I am disciplining them or just talking. I have to stop myself and remember not everyone, even my kids, need to hear every detail. This is something I work on when talking to anyone but especially my kids.

Earlier this week I had an IEP meeting to discuss Jake’s behaviors at school. He went through a rough period and his behaviors were escalating. The meeting went well and I am thankful for a great team that seems to have Jake’s best interest at heart. Fortunately, Jake’s behaviors have decreased. I really believe he was out of sorts because we had 6 snow days, we got a new dog and John started a new job which took him out-of-town for nearly a month. There have also been changes at school; Jake is now in kindergarten full-time and will go to the resource room once a day for a break. Also, instead of one aide all day he has two aides that split the day. These are all pretty big changes for our boy. Throughout the meeting they sung Jake’s praises. I felt really good knowing that the principal as well as the rest of Jake’s team check in on him while he is in the kindergarten classroom. Jake’s kindergarten teacher is fabulous. She gets Jake but what I love most is that she treats Jake the same as her other students. We don’t have many accommodations in Jake’s IEP (something I wanted) and the only difference is that he leaves for breaks every now and then. Jake responds well to most of the time. Anyway, to make a long story short (ha-ha), they were all proud of the progress Jake is making.

That night while I was getting Jake ready for bed I told him that I met with his teacher. He looks at me and smiles. I ask him if he loves his teacher and he looks at me with this huge grin and nods yes. I went on to say “buddy, everyone is so proud of you! And mommy is so proud of you and that you are working so hard each day!” He gives me a half-smile. I go on to say “I just love that you love school and that you love your teacher and that you have fun with your friends!” He is gone, I can see it in his eyes but I want him to understand how proud I am of him and how much I love him. I know I’ve gone too far. He looks at me with a very tense face and covers his ears and I brace myself, ready for the tears or meltdown; he does neither. I sit quietly and hug him. He takes his hands off his ears and says “mommy, too many words.” This is one of the very few times I can remember that he actually used his words to express himself. He didn’t cry or meltdown from my talking too much! He was able to tell me exactly what he was feeling. And in a nice way, he basically told me to be quiet! Of course I wanted to tell him again how proud I was and all of that mushy stuff but I didn’t. I just hugged him tight. The look on his face was precious and he relaxed. It was all I could do to not start talking again.

I have grown a great deal during this journey with Jake. He has taught me SO much; more than I thought possible. I have learned patience, to speak up for what I know is best for him and that my first instinct is usually right. But one of the best lessons I’ve learned is that sometimes you just have stay quiet, wait and listen and he will tell me all that I want to know. Jake has a different way of expressing himself from most. He is affectionate but on his terms, he is funny in his own way, he is so energetic and the pure happiness that exudes from him is contagious.

I love this kid and am thankful that I learn as much from him as he does from me 🙂

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James 1:19 “My dear brothers, take note of this: Everyone should be quick to listen, slow to speak…”

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spring break

This past week was our spring break. I was looking forward to going to the zoo, the park or whatever we wanted to do on any given day. Monday, Jake was feeling great. We went to his OT and PT, we went and got a fun snack at Sonic and then Jake and I took Lexi on a long walk. Jake had so much fun chasing Lexi, holding her leash etc. The boy was nonstop moving and nonstop talking. As we walked and Jake chatted I couldn’t help but feel extremely thankful for the progress Jake has made over the years. He was all smiles. I was really looking forward to our week ahead.

Tuesday Jake woke up with a 101 fever. Jake was not his energetic self, he just laid on the couch. I knew he was going to get sick. Jake has a way of showing us that an illness is coming by his behaviors. Usually a few days beforehand he will be out of control. And Jake was! He was running and bouncing. He had a hard time listening and I had a hard time giving him the physical input I felt he needed. Monday morning Allie asked me if I thought he was getting sick; she knows the signs too. So when he woke up with a fever I wasn’t too surprised; 3 long days before Jake became sick he was a handful. On Tuesday Jake was quiet, he laid on the couch and didn’t move. He barely ate but fortunately acetaminophen brought his temps down. I can’t say I didn’t enjoy the calmness. When you have days of uncontrollable activity the quiet is a Godsend.

For the rest of the week it was the same. Jake’s fever hung around. He would lay on the couch until the medicine knocked his fever out and then he would play. We had planned to go to the zoo on Wednesday but there was no way. Each day I hoped he would feel better so we could do something fun but that day didn’t come until Saturday afternoon. It was a long week.

When Jake is sick he doesn’t want to be sick (who does-ha!).  He cries and repeats “Jakey’s not sick”. I can’t get any information from him to know what is hurting him. When I ask him if his throat hurts he says “I’m fine, really!” I asked him over and over if his head or throat hurt. He wouldn’t answer except to say he was just tired and didn’t want to talk. I would have taken him to the doctor but I felt it was a virus. And I’m sure the doctor would have told me to do what I was already doing. Also,  Jake has a hard time at the doctor. He doesn’t like being touched and to run tests on him is difficult.

So our week consisted of Jake laying on the couch, lots of Sprout, lots of water and fever medicine. There were times it was okay. I enjoyed the rare times he would snuggle up with me but mostly it sucked. He wanted to sit alone, not talk and play on the couch. One or even two days of this is fine but when it lingers for nearly 5 days, it’s a bit much. By midday Saturday, he was feeling better with no fever. He was back to his usual self; playing, running around and a happier kid.

When each of my children were small and before they could talk, I looked forward to hearing their sweet voice. I looked forward to the first words of mommy or daddy. When Jake was little and it didn’t look like he was going to talk. I truly longed for words. I  prayed that one day I would hear his sweet voice. It took some time and I am thankful each and every day when my boy looks at me and says, unprompted, “I love my mommy!” It just melts my heart. While Jake was sick that was about all he would say to me “Mommy, I love you!” They aren’t just words, you can tell he feels that love and knows what it means. When he says these words to me they shine through his eyes. If Jake could string more words together I imagine him saying “thanks for taking care of me and I love you!” He has only recently started telling me he loved me and he usually just looks at me and says “I love my mommy!” The other day Jake had his favorite blanket and gave it a huge hug and told me “I love my blankie so much!” Made me want to cry. It was so sweet and earnest.

So even though our spring break didn’t turn out the way I had imagined, it was okay. I was able to spend time with Jake and take care of him but the best part of all was seeing the love shine from his face when he said “I love my mommy!”

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Jake took this picture which is why it is fuzzy 🙂

 

 

“Be completely humble and gentle; be patient, bearing with one another in love.” Ephesians 4:2

it takes a village

It was a day I had dreaded. I knew it was coming and had thought ‘how I could fix it’ before the chaos would inevitably begin?

A couple of months after Jake had been diagnosed with autism I had done a lot of research. Like many of us with children on the spectrum, I wanted to look for additional help. I wanted to find out what other parents were doing or what tools they were using to help their child. One of the searches that kept coming up over and over was the use of iPads and how much it has helped children diagnosed with autism. As I searched and read article after article I knew I needed to get an iPad and as I suspected they were super expensive. I started looking on other sites trying to find a used one. Around this time I was having lunch with some of my girlfriends and one of them told us they were going to sell their old iPad on eBay. I about jumped out of my seat! I immediately asked how much and if I could buy it from them. I had previously told my friends how much iPads had helped many kids like Jake and I had thought it would be a great way for me to work with him at home. My sweet friend called me later that day and told me she and her husband wanted to give the iPad to Jake. I was stunned, excited and so appreciative!! And needless to say, Jake thrived with the help of the iPad! We used flash cards to help with speech, read books, played games, practiced writing and I could see him growing! Jake’s iPad has become a great tool and not to mention a life saver when we go out to stores or restaurants!!

I believe this was about 3 years ago. And this iPad has been loved and used well. Over the past several months the tablet has acted up. It will shut off unexpectedly and because it is the first generation it won’t take any new updates or most of the newest apps. So I have saved and have been looking to find a replacement before his beloved tablet shut off forever.

Several weeks ago I saw a post on Facebook about a nonprofit organization that uses crowd-funding to help families like mine get an iPad. I was skeptical about it and researched their site but wasn’t sure if that was the way I wanted to go. I ask a lot of my friends and family and really didn’t want to ask for something else. Let’s just say pride was a huge factor.

This past Saturday our beloved iPad just randomly stopped working. Jake was in the middle of a game and it shut down. Jake looked at me and went into an instant meltdown. He brought the table to me and crying and said “it’s broken and won’t be fixed!” He was upset and angry. As I sat and worked on his iPad trying to get it to come back to life I couldn’t help but wonder how I would react if my computer or phone broke. I might have a meltdown as well. Fortunately, I was able to delete some apps he no longer uses, restore his iPad and got it turned back on and working. I was relieved and Jake was happy once again. I knew I needed to figure out a way to get a replacement.

Due to car problems over the past couple of weeks I knew that the replacement iPad would have to be put on hold for a while. So I revisited the nonprofit group, Wizard Talk. My pride was still getting in my way. I didn’t want people to think I wanted something for nothing, I didn’t want people to pity me or my family. The reality is those who are truly my friends and those who are Jake’s biggest supporters know what it takes to help him succeed and know it can cost a fortune to get all the tools needed. Parents with children who have a disability know what it takes to help our kids. Many times it takes more than we have. More money, more energy and more patience than we thought we might ever need or have.

I decided to put my pride away. This past Sunday I messaged the nonprofit organization looking for assurance that this was a legit company. I viewed pictures of recipients and talked to a really helpful customer support person and felt better about using this method to help Jake. So I thought, ‘what the heck, I’ll put a fundraiser out there and see what happens.’

I set up a crowd-funding page through this fabulous company, Wizard Talk a Kulturecity Project. The goal is to raise $300 and they will send you an iPad Mini; that simple. So I set up the page and shared it on my Facebook and Twitter accounts. Within minutes after I had posted the link to my page, I had a donation. Within 3 hours my goal was met!! I happened to be on the phone with a friend and she told me I met my goal. I was stunned. I was appreciative. But more than anything I was overcome with the love and support I had received from my friends!!

Words cannot express my gratitude to those who continue to pray for Jake, who give their support in monetary as well as non-monetary ways. There are days where it is so tough I don’t think I can do it anymore. There are days where I feel like I have conquered the hardest part and feel proud of my son and myself for overcoming another obstacle. But it takes a lot of support from my friends and family. It takes a village. And I will forever be thankful for the village I have, for the support and love I have from those that want to see Jake succeed as much as I do.

Thank you!!

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“And hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.” Romans 5:5 (NASB)

patience

The other day I was listening to klove (a Christian radio station) and they were talking about communication. A caller was giving one of the DJ’s some advice on how to ask questions so that you can get a better response. It got me to thinking about Jake and how he communicates. Broad questions are tough for Jake. I know he understands “how was your day?” because he always gives me the same response “good.” But if I want a more in-depth answer I have to be very specific or he shuts down. When I ask him “who did you play with today?” he will more than likely say “I’m tired I don’t want to talk right now.” If I ask him “did you play with Susie today?” I will usually get a yes or no answer. Jake has only recently began to understand the who, what, when, why and how questions which is a huge breakthrough but to get more info I have to really think through the way I phrase the questions to get more than one word response. If I ask him too many questions he will shut down. I really have to think it through first and be patient for his answer; this all can be quite challenging.

When Allie was Jake’s age she was a talker (she still is). If you asked her how her day was I had to be ready for a very long conversation. She would tell me every detail about everything that happened while she was at school. I didn’t have to ask her a ton of questions because she was always extremely forthcoming. I remember some of her friend’s moms calling me to find out about certain things that went on at school, they all knew Allie told me everything. The boys weren’t like this, they were the type to give you one word answers and it usually consisted of the word “fine”.

I realize it isn’t untypical for a child not to go into great depth and share everything. But with Jake it is just different. You can see the disconnect in his eyes. You can see the struggle he is having answering some questions; the ones I think may be simple. If I ask him “what did you do today?” he doesn’t respond. He did a lot and can’t verbalize any specific events that occurred. I have to be very direct and ask “did you go to the library today?” or “can you remember who you played with outside today?”

Occasionally Jake will tell me, with no prompting, “I had fun at school today.” It always throws me off for a second. I am still not used to him talking or telling me things unprompted. I almost get too excited and blow the moment. The last time he said this to me I responded with “that is great buddy, did you play with Katey?” He will answer appropriately. Then I wait to see if he says anything else. I try my best to let him take the lead especially when he initiates a conversation. It is hard because I want to jump in and ask questions like ‘what did you do? did you play outside? did you play ball, run? did you have fun?’ But I have learned to wait. Very rarely he will continue the conversation and tell me where they played or what they did. I love that he is remembering and is able to share with me some of his thoughts.

I want to know what he thinks, I want to know what he remembers but most of all I just want to feel closer to him through communication. I always have to remind myself to give him time, to be quiet and let him process his thoughts and put them into words. Many times it is difficult for him. There are times he will tell me something and struggle to find the right words, I want to jump in and offer the words he is searching for but I don’t. I wait and see if he can form his sentences independently. He can if given the time. You can see him thinking, you can tell he wants to tell me something but it is so important to wait it out and see what he can do.

Like so many times with autism it is a waiting game. We know the information is inside of him but we have to patiently wait for it appear. I say we, but it more like “me”. Patience is not my strongest suit. I have a hard time with it but again, one of the things I learn daily from Jake is how to be patient. If I wait and give Jake the time he needs it is amazing and I couldn’t be happier. The times I push it I am almost always disappointed.

If I could offer advice to anyone who has or knows a child on the spectrum it would be to continue to work diligently on tasks and then wait. Be patient and you will see the results; and you will be blown away!!

 

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“But if we hope for what we do not yet have, we wait for it patiently.” Romans 8:25

 

the new bed

Since Jake moved out of a crib (age 3) he has slept in a tent. It was a tent specially designed for kids on the spectrum. Jake loves being in tight or enclosed spaces so we thought this would be perfect. It took him a few days to adjust being out of his crib and in his new bed but he loved it; it was his safe place. Anytime he became upset he would climb inside and zip it up. It helped him calm down and it confined him to his room. Right before we got the tent Jake would climb out of his crib and roam the house; it scared me to death. So many kids on the spectrum tend to wander and I had these visions of Jake unlocking the front door and wandering the streets where we live. I couldn’t sleep because I was so afraid. The tent saved all of us at the time. I’ve gotten strange looks when people would see his bed or when I would tell people he slept in a tent but it is what worked for us and more importantly for Jake.

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The past several months Jake’s tent has been on its last leg. The poles were broken and it sagged so we decided it was time for a big boy bed but Jake insisted on a tent for his big boy bed. The manufacturer of our old tent is not around anymore so we went on a hunt to find something that would work for Jake. We found a platform bed and a really big tent. I read a lot of the reviews and showed it to Jake and he said he loved it! He even got to pick the color of his tent. We also went shopping and let him pick out new sheets and comforter in hopes it would make him excited to sleep in his new big boy bed. Last week we got his new bed all set up and the smile on Jake’s face was priceless. He said “I’m a big boy and love my big boy bed!” I was nervous how he would do adjusting to his new surroundings. The first night he cried saying he was scared. His new tent is much darker inside than his old one was so we adjusted his night-light and I kept going back into his room reassuring him that he was okay. Once we found what worked best for Jake it has been smooth sailing since. He loves that he can climb into bed and cover up with his new blankets. He loves he can read and play while in bed. We no longer have to zip up his tent to secure him in it which is SO nice. He knows to stay in his bed until we come to get him or he calls us in the morning. His room is extremely child proof so I don’t worry too much about him getting out of bed to play but still worry about him wandering the house. I have an alarm I am going to put on his bedroom door so if it opens in the night we can hear it and will be putting one on the front door.

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As I look at the picture of all the stuff in Jake’s bed I realize how much it suits him. He’s got his Paw Patrol, Planes, Thomas, Woody from Toy Story and Cars. There are books in his bed too. He sleeps better at night being surrounded by all of his favorites. He is happy to hang out in his room and actually likes the really dark tent when we zip up the sides. He still has his enclosed space when needed and because this tent is taller he can now sit up in it more comfortably and play.

Before we started looking for a bed part of me really wanted to do away with a tent. I wanted him in a typical bed like my other kids had. As I was shopping I found myself getting discouraged because what I wanted wasn’t best for Jake. I asked Jake if he wanted a new tent and he told me “Jake needs a tent to sleep!” So I adjusted my thought process. This is what Jake needs; this is his typical.

Like many kids, Jake needs sameness. But because he is on the spectrum I am finding he needs it more than a typical child. He thrives when he has a strict routine. His behaviors are much better and he is just happier when he knows what is next. We work on changing up his routine from time to time and with a total of 6 snow days in the past two weeks Jake has been challenged. He loves being home with mommy but when he knows he is supposed to be in school and instead is at home, he has a difficult time during the day. Weekends he is great, for the most part, but if he is home during the week when he knows he should be at school it can be problematic. Jake will go over to the calendar to check the date and then ask me multiple times if we are staying home. The last day we were home, this past Thursday, he kept saying “but Jakey needs to go to school!” I wanted to say and I might have actually said it “and mommy needs Jakey to go to school!” It took a big part of the day to help him focus and understand that there was actual snow on the ground and his school was closed. It didn’t help that his sister’s school was open and she wasn’t home. This was probably one of the longest days for me; all I did was repeat “Jake, you have a snow day so there is no school. Maybe tomorrow you will go to school.” Fortunately he did go on Friday and all was right with our household.

I was a little uneasy about changing up Jake’s room. You may be asking why I would change his room during all of our crazy weather and his school routine being thrown off. I thought about delaying it but part of me wanted to see how he would do with yet another change. As you know changes happen every single day of our lives. We all have to adjust our thinking to whatever curve-ball is thrown. Jake is so rigid and becomes so anxious when his routine is modified but my thought process was, he is already upset about there being no school maybe this will help. Plus Jake wanted his new tent and bed so I thought, why not. I’ll help him through it and it will be what it will be. He did exceptionally well. As I said before he welcomed this change and I think a huge part of that is because we had talked about it a lot.

The unexpected changes are the ones that really throw him. Even though I hated that Jake’s routine was mixed up I think in the long run it may help. I can use these days in the future to help him see and understand that they may be hard but we can work through them.