the dentist

Jake hasn’t been to the dentist since he was 4. That visit was awful, to put it mildly. He wouldn’t open his mouth, he cried, screamed and tried to escape. I was a sweaty mess by the time we left. The dentist we chose was awesome and very accommodating. He tried everything to get Jake to open his mouth just so he could look at his teeth. In the end he was able to get a quick peak but only because Jake was crying. I tried to go back. I read Jake social stories, showed him pictures but to no avail. Anytime we drove by the dentist office Jake would scream and start thrashing in his seat.

Jake has lost 6 or 7 teeth. I knew he needed to go back and get his teeth cleaned and checked for cavities. I called on Tuesday and they had a cancellation the next day and offered me an appointment at 8 a.m.; I took it. His dentist moved their office to a new building so my prayer was that Jake would not remember the horrible visit and do better this time.

I told Jake about his dentist appointment and he cried and clamped down his mouth and said through clenched teeth “I not going, no way!” I showed him pictures of the different tools, showed him who his dentist is and prepared him as much as I could. Anxiety was taking over me and Jake.

At the dental office, they called Jake’s name where he walked back on his own; a victory in itself! They showed us to the chair where Jake would have his teeth cleaned. It was a flat chair with a TV overhead, I knew this might be a problem. The hygienist told Jake to lay down so she could look at his teeth. He said “no way”, tried to run away and screamed saying “no”. I had a death grip on him so he wouldn’t hurt himself or anyone else. I started sweating. They know about Jake’s autism, they see a lot of special needs children, which is why I picked them. I told the hygienist that unless I held him down, something I didn’t want to do, that it would be traumatizing for him. She was sweet but seemed unsure what to do. Fortunately, our dentist walked by and recognized us from 2 years before. He said “hold on, I am going to get you a private room with an actual dental chair where Jake can sit up.” I felt relief!

Jake and I walk into the private room and he seemed calmer. The hygienist was super sweet and after a lot of persuasion I was able to pick Jake up and put him in the chair. She told Jake she wanted to look at his teeth. He screamed. She showed him the different tooth paste and asked him which color he wanted and he said “blue, like at home”. Of course they had to run around and try to find the blue kind. After showing Jake the “toothbrush” he opened his mouth and she was able to count his teeth and give them a simple cleaning. She was soft-spoken and didn’t seem phased by Jake’s behaviors. She respected Jake’s boundaries, talked with him about what she was doing and worked with him to make him as comfortable as possible. By the time Jake’s dentist came in he was ready to go. But Dr. S. talked to Jake about his favorite movie, Toy Story, and Jake relaxed. Dr. S. wanted to look in his mouth but Jake said “no, thank you. I already did that”. He laughed and asked Jake if he would open his mouth just one more time, “can you do it for your buddy Buzz Lightyear?” (Jake had brought his toy along for company) Jake smiled and opened wide. Dr. S told Jake he was counting his teeth and talked a lot about Jake’s favorite movie, Toy Story. After Dr. S. had finished looking in his mouth he said “Jake, my buddy, thanks for being a big boy. You’re my favorite deputy”, a line from Toy Story. Jake had the biggest smile on his face. Right before Dr. S. walked out Jake said “thank you”, totally unprompted. Dr. S. stopped, gave me a thumbs up and asked Jake for a hug. Jake said “sure” and leaned in and let Dr. S. hug him; something Jake NEVER does with new people. He allowed the hygienist to hug him too. And we were done.

So glad that is over. But more than anything I am grateful for an awesome dental team that works, understands and accommodates kids like Jake. Although I was sweaty mess by the time we left, it was a positive experience and glad we were able to have Jake’s teeth checked. No cavities, his teeth look super healthy and we don’t have to go back for 6 months. Hallelujah!

When pediatric doctors go that extra mile for any child whether they are special needs or not, it means a great deal! Many of us have typical kids with quirks that make some situations hard. But when a doctor takes the time to become aware of autism or any other special need, it shows to me that they really love their job and the children they see. I’ve heard horror stories from other parents who have children similar to Jake. These parents have said that comments were made by the pediatric staff how they don’t ‘have time for this’. I understand it can be difficult. Heck, I live this life with my kid every day and there are many times where I think the same thing! But I admire and respect those that do have time for my “unruly” kid. I work hard to help Jake so he won’t be “unruly”. Sometimes his body just can’t help it. Pediatric doctors who take the time to read up on disabilities, who work with the parent and the child to make a not so pleasant visit the best it can be are truly heroes in my book.

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trials lead to celebration

I write a lot about Jake’s success and the progress he has made. I am super proud of this kid and all the obstacle’s he has overcome. I try to be positive and share a lot of the “good” stuff. One of the things my dad taught me while I was growing up was to “always look for the good in life, it’s there”. But as we all know, at times, to get to the “good” we have hard stuff to get through. In my opinion, it makes us stronger. Those “dark” days shape us and mold us and teach us to do it better the next time.

Kindergarten is in the books. Jake made it through his first year of school and he knocked our socks off.

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A lot of hard work has gone into Jake being able to attend a typical kindergarten classroom. Several months before Jake started preschool, different therapists asked me “what is the main goal you have for Jake?” Easily I replied “we want Jake to be in a typical classroom in kindergarten with the help of an aide.” The next question that was presented to me made me pause for a minute. I was asked “Are you ready for the hard work, are you prepared to do whatever it takes to help Jake meet this goal?” Of course I was! I had already been through some most difficult tasks, I felt I was up for anything. But what scared me was the unknown. Battling questions went through my head from ‘could he do it but more than anything could I help him get there?’ Fortunately, I have had the best therapist’s and advisers helping me help Jake. Our journey, to get Jake where he is today, isn’t pretty. Seriously, there were many tears, heartache and disappointing moments.

When we started ABA therapy (age 2 1/2) the BCBA told me it wouldn’t be easy; it would be very labor intensive. She wasn’t kidding!! I remember sitting with Jake and our BCBA, she was teaching Jake to clap. At this age, Jake’s verbal skills were mostly repetitive. He couldn’t verbally tell us he didn’t like something, instead he would cry. Screaming would be a better way to describe this. He would throw his body into things, kick and hit. To be honest, it was horrible! Repetition of something was and is the best way Jake learns. His therapist would work on the same goal over and over and over and over. Something as simple as clapping had to be taught. ‘Do this, clap clap clap. Good job. Do this, clap clap clap. Good job, that is clapping’. Jake worked on the most basic of skills from clapping to sitting in a chair to playing appropriately with a toy. All of this had to be taught to him. He didn’t imitate like you see most little ones do. We would clap for Jake and he would look at us with a blank stare. He didn’t understand. The processing of information wasn’t there, we had to teach it to him. It took Jake until he was 3 to feed himself, he couldn’t grasp the information of how to hold a spoon. We had to teach Jake how to pick up a toy, how to find an object that was out of sight and too many other things to list. The work was non-stop. We were always in therapy mode. Our words were therapy driven and although he was with a variety of therapists for about 15 hours each week; we never stopped once the therapists were gone.

For example, I would hand Jake a cup. He would look at it then at me. I would say “This is your cup.” I would show him how to drink from the cup. He would cry (more like screaming as if he was on fire). He wanted me to hold his cup so he could take a drink. I would say, “Jake you can do it. This is a cup, pick up the cup.” Then I would help him pick up his cup and say “this is holding a cup. This is drinking from a cup. Good job buddy!” We did this for weeks on end. As I recall this moment it brings back the same tired feeling I had back then; just a mere 4 years ago.

Self-feeding was another HUGE obstacle. It took a lot out of us to help Jake learn to feed himself. Up until he was almost 3 I fed him like a baby. Before we started working on this with our therapists he would scream when I handed him a spoon. I didn’t understand. This was around the time we received Jake’s autism diagnosis, I was learning what autism was and how it went much further than quirky behaviors. We had to teach the same way we taught him to drink from a cup. He would scream and cry. And not the normal crying from a 2 1/2 year old, his face would turn blood red, he would scream, hide his face, run, hit or whatever he could do at that moment to flee the situation. Many times I had to physically hold him between my legs with my arms and legs wrapped around his holding him in place. If I didn’t do this, he would injure himself or someone else. I hated it!! As tears fell down both of our faces I would tell him it was okay, that I was there to help him. This was one of the most challenging things I had to teach Jake (outside potty training). I would cry right along with him because I knew he needed to learn to feed himself but the tears and heart wrenching screams were unbearable! For months we worked on holding a spoon and eating. For months he screamed and there were many times I gave in and fed him myself simply because it was too much. But, he finally did it! And it was a huge deal at our house. Jake would take a bite with the spoon and he would smile. Then he would wait for the celebration. And let me tell you we all celebrated! We would shout hooray, clap and cheer him on to finish his food. You would have thought we were celebrating his first word or something much grander than holding a spoon and bringing to his mouth. But this was a big dot deal!

The only thing I haven’t had to teach Jake, at this point, is how to read. Jake has always loved books. I remember when he was nearly two and Allie telling me she thought Jake could read. I just thought he liked staring at the letters, they have always fascinated him. We didn’t really discover his ability until he was close to 3. He read before he could talk. I was happy the boy could read and not for the reasons other people might be. I was happy that this would be one thing I didn’t have to teach him. Finally, I got a break! Sounds funny but it was the truth. It gave me some relief just knowing I wouldn’t have to drill the sight words and explain all the “stuff” that you have to teaching a child to read.

From the birth to the present Jake has worked hard. He has had to learn so many things that I took for granted with my 3 older kids. And just because Jake has finished kindergarten in a typical classroom our work is far from done. We currently work on anxiety, using appropriate words to express his feelings versus crying. We work on his meltdowns, sensory issues as well as social skills, to name a few. Because Jake can now talk it has become somewhat easier but daily we vigilantly work with him to help him continue to succeed. The only break we get is when he is asleep.

Some might call this overkill or some might say that this is too much for a child to handle. But honestly, it isn’t. Jake cannot process the “normal” day-to-day occurrences like those without autism. Jake needs us to teach him how to work through problematic situations.  One of the best tools we have had this year has been peer influences. Although some aren’t quite what we want, he is still learning. He knows right from wrong, he has learned to follow directions and imitate his peers. Jake is a visual learner. If you were to see him with his peers you might think he isn’t paying attention, but on the contrary, he is taking in everything. He has learned to watch what his peers are doing and learns through observation.

Jake has had a FABULOUS year and he has made incredible progress. BUT it hasn’t been an easy road. It has been a journey; a hard, twisty and tumultuous path! But the end results are worth every tear we’ve cried and every “I can’t do this” moment.

Jake will be in first grade in the fall (woo hoo). We have so much work to do over the summer and much of it has the potential to not be pleasant. BUT when I think back to where we started and all that we have gone through, I know we can do it again!

I share this with you so you know the struggles we have faced. Jake didn’t get where he is today easily.  A lot of time and effort went into being able to attend a typical kindergarten classroom. We have had the best therapists, teachers, friends and family encouraging, praying and helping him along the way.

Our goal for the next year and a half is a big one. We want Jake to attend a typical classroom by the middle of 2nd grade without an aide! Big goal but knowing my boy; it will happen 🙂

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 “Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

never give up!

One of the hardest parts of being a parent to a child with special needs to is to sit back and watch. This might be easier for other parents but for me it is incredibly difficult! I want to jump in and help, I want to fix the problem or, and this is a big one, make Jake’s differences less noticeable. Don’t misunderstand; I am not ashamed of Jake’s differences. But there are times I want to make it easier for him. But what purpose would that serve? Easier is not always better.

Last week Jake had field day at school. It was so much fun to see him with his peers and playing the games. I was so proud of him. He competed in each game with a smile on his face and had the best time! A couple of games looked like they might be a bit challenging for Jake. One game was the potato sack race. I asked one of his aides if he knew what to do and fortunately the kids had practiced in PE the week before. It was Jake’s turn, he took the bag and struggled to step into it and pull it up. I reluctantly stood back and watched him work at getting into the bag. I wanted to run over and help him but restrained myself. His aide stood by watching with me and saw me wringing my hands. She assured me he could do it. I knew I just needed to give him time. Eventually a 5th grader helped him into his bag and off he went. He was so proud and the look on his face was priceless. When it was his turn again he didn’t struggle to get into the bag and the boy hopped backwards to the finish line. Later that night as I was tucking Jake into bed I told Jake how proud I was of him that day. He looked at me with a smile and said “Jake was proud too!” Talk about heart melting.

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Jake has had physical therapy for the past 3 1/2 years. I am SO grateful for the women that have worked with him. They have taught him to hop, jump, climb stairs and throw a ball. The entire afternoon I kept thinking of my lovely PT’s and was so thankful that they helped Jake the way they did. He wouldn’t have been as successful during field day without their loving spirits and their “you can do it” attitudes. Thank you!!

This past weekend Jake went to his first birthday party. It was a classmate’s party and when we got the invitation I asked Jake if he wanted to go. He said no without even thinking about it. I asked him to think about and we would talk about it later. He smiled and said okay. A few days later I was showing him pictures of where the birthday party would be and how much fun he would have jumping around on trampolines. He looked at the pictures and said “I don’t think so.” The questions that rolled through my head were “should I make him go?”, “should I keep pushing the issue or let him make the decision?” I knew once he was there he would have fun; I gently pushed him to go. When the day of the party came he was super excited! He couldn’t wait to go jump with his friends. John and I took Jake to the party and saw one of his friends and his face relaxed a little. As other friends arrived I could see his anxiety level decrease even more. They make you wear special socks to jump and although he was reluctant to put them on and walk; he did it!! We made our way to the trampoline and the boy took off. Running and jumping playing with the balls etc. Again, watching that smile was the best part!

Although he jumped, ran and had a smile the entire hour of jumping I wanted him involved with the other kids. The rest of the boys were playing dodge ball and Jake was like a ghost to them. He ran around and watched them throw the balls. It was as if he was out there by himself. I asked one of Jake’s friends to show Jake how to play and he replied “I don’t want Jake to get hit by a ball, he might cry.” The way the boy said it wasn’t mean. The tone he used was sweet; he was protecting Jake. I could have focused on Jake not being “involved”. I could have obsessed on the fact that Jake was alone in a sea of other 6 year old’s. As John and I watched and talked about what we were seeing we chose to focus on this happy boy who was a part of the fun in his own way. He was having the best time! His smile never weakened. He would fall and would jump right up and keep going. He never gave up!

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Jake is different and as we walk this journey I embrace those differences more and more each day. It is hard but when I choose to see the smiling, hard-working boy versus the boy with a disability I know I am doing the best for him! And I can’t ever resist the smile he throws my way or the proud look on his face when he has tried his very best!!

This boy is an example to all of us. Life is hard and there will be lots of challenges but if we go forward into those challenges with a smile and determination…anything is possible and anything can be achieved!!

thankful to be a mom :)

As a mom, I want feedback as to how my children are doing. I want to know that the older ones are happy, that they love their career choice or pursing the career they dream about. I want to hear about their accomplishments as well as their failures. Because I am their mother, I want to help them succeed, to be happy and to help them when they think they’ve failed. Being a mom doesn’t stop just because your child leaves the house or gets married. You still love with all of your heart, you still want the very best for them and because you are their mother your love is pretty much unconditional!

It is a little easier when your children live at home. For the most part you know what is going on in your child’s life. With Allie being 17 and of course still living at home, I am aware, for the most part, what is going on with her. I can see it for myself. I know her moods, I know when she is happy, sad, frustrated, etc. Also, Allie likes to talk…a lot! So our relationship is pretty open, or as open as she wants it to be. It is hard to believe she will be a senior soon and then she too will be moving off to college. It is all bittersweet. But no matter where she goes to college or what she plans to do with her life she will have my support.

Because Jake is 6 and is still learning how to communicate, getting feedback proves to be more difficult. Just the other day his aide told me he had lost a tooth at lunch. I check his teeth pretty regularly as he won’t tell me if he has a loose tooth. I still had no clue his tooth had been loose. Jake also has bumps and bruises; no idea how most of them got there. I rely so much on the school for the feedback I need as to how Jake is doing because he simply can’t give me the details; yet.

A few weeks ago I requested a letter from Jake’s kindergarten teacher pinpointing Jake’s strengths and weaknesses for a summer social skills group he will be attending in July. When I received this letter from Jake’s kindergarten teacher, it melted my heart. The pride I felt while reading this is indescribable.

“Jake is a wonderful addition to our classroom.  He seemed to fit right in from the very first day.  He was able to adjust to the procedures of the classroom and able to handle himself in the many different situations.  He had to work individually, with a partner, at a table group setting, in small groups, as well as in a whole group setting.  When he first came to our room, he would stay at his seat when the class was doing our “choice baskets”.  This is a free time, with a partner, of playing an educational game of their choice.  As time has gone on, he now gets out of his seat and plays with different partners during this time.

Our classroom behavior system is a clip procedure.  Throughout the day, children can move their clips up or down, depending on the choices they make. This allows them to improve if they make a wrong choice.  Jake, like the other students, understands that when he makes a choice that is not good, he has to move his clip.  He doesn’t like moving it down, just like the other students in our class don’t, however he understands that he has the opportunity to improve his behavior and move it back up.

Jake loves to participate at carpet time.  He raises his hand and will answer questions and come to the board and write answers when he is called on.  He has a habit of wanting to take a restroom break at the beginning of group.  We are working on asking him to hold off a little, because we think it is more of a habit rather than a necessity.  Jake is not a fan of sitting criss/cross at carpet.  This can sometimes be a problem because he is so tall.  I can usually just count 1-2-3 to the whole class and he will follow along with the other students.  I usually have to remind him a couple of more times but he usually quickly sits down.

Jake is not treated any differently than any of my other students.  When we have reading groups, he is with his reading group and his aide works with other students while he is doing this.  He works independently at his table when other reading groups are going on.   If he needs help, he asks for help as the other students do.

I don’t feel that Jake is treated any differently by his peers.  He plays football (usually running back and forth) with the other boys in our class.   He sometimes gets a little rough on the smaller playground but I don’t think he realizes how much bigger he is than some of the other children.  He is not doing this to hurt them.

I think what Jake said when we had “Light it Up Blue” week sums it up. The announcements came on the intercom and they were talking about autism awareness and Jake replied, “I’m just Jake”!

I have loved having Jake in my class this year.  He is so sweet, kind, fun and loving.  He even gives me hugs now!”

I have read this letter a million times and each time it makes my heart smile! Jake has worked incredibly hard over the past several years and we are seeing the results! It makes his momma so proud!!

Being a mom starts from the moment you give birth and doesn’t end. It is a role I love and I have been blessed with some great “kids”! It is also hard work. There are many sleepless nights, worrying, heart breaks and many tears. But there are more laughs, more hugs and more proud moments which eliminate the rough ones. I wouldn’t trade my role for anything.

I am blessed to call these “kids” my own!!

 

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“She watches over the affairs of her household
    and does not eat the bread of idleness.
Her children arise and call her blessed;
    her husband also, and he praises her:
 “Many women do noble things,
    but you surpass them all.”
Charm is deceptive, and beauty is fleeting;
    but a woman who fears the Lord is to be praised.
Honor her for all that her hands have done,
    and let her works bring her praise at the city gate.” Proverbs 31:27-31

 

 

 

letting go and having fun

 

A couple of weeks ago John’s dad came for a visit from New York. He is such a sweet man and loves his grand-kids!! I mean who would drive 2 days from NY to see their family? Well, I am sure some grandparents would; I would if it meant spending time with my kids and grand-kids.  We are so blessed to have this man in our lives!

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In the past Jake didn’t seem to be phased by his visit. We would tell him his grandpa was coming and he might smile but honestly he didn’t act as if he cared. This visit has been a first for Jake showing his feelings about his Grandpa being in town. Each day Jake would ask Grandpa “You are staying, right? You aren’t going yet? You’ll be here when I get home from school?” You can imagine how this made Grandpa feel. We were all ecstatic to see the changes in Jake. The last visit (June 2014) Jake was interested in his grandfather but never voiced his feelings as he has now, nearly a year later. It is amazing to see the transformation. Notice in the picture above how Jake is riding in the scooter. In years past Jake would have NEVER ridden the scooter with Grandpa; it’s these small almost unnoticeable achievements that make my heart smile!!

And then there was the zoo last week. Jake’s kindergarten class had a field trip and Jake was paired up with a friend. As we went through the zoo Jake followed his friend and copied him walking and jumping etc. I’m thankful for the years of PT Jake’s had; a year ago Jake would have had a hard time keeping up. Jake got scared a few times. One of those times it was as we were about to go into the night creatures building. Jake didn’t want to go inside and stood at the door saying “no!” But his buddy helped Jake by cheering him on saying “come on buddy don’t be scared, I’ll be with you.” Jake was still scared, heck I don’t like that exhibit much either, but he did it and I couldn’t have been more proud. Not just for Jake but for his friend that encouraged him and helped him get past the “new things” that were holding Jake back.

In the picture below, notice how the boys are standing. Jake’s buddy knows that Jake doesn’t like to be too close or touched. Originally Jake’s buddy stood next to him and Jake looked at him and without words Jake’s buddy stepped aside. There were no tears, no odd looks from the friend…Jake’s friend accepts this from Jake and complies willingly, knowing it is what Jake needs.

 

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This past school year has been one full of changes. Changes in Jake’s schedule, changes in teachers and more has been expected from him. Jake has shown us that he is capable of so many things. It may take him longer than other kids to adjust and learn the new routine but he can do itSometimes my fear wants to hold Jake back but when I let go, I can see that my fear isn’t valid, Jake can do so much more when I step back and let him try.

“For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11