Hey all. Thanks so much for reading! I took a break to talk about feelings last week. I hope we all agree that it truly is okay to feel. It's human nature. But I do have to get back to my story.....
We were last at Jump Start and excited about JB's first word....butterfly......but at age 3, students must leave this wonderful preschool. At 3, students enter the world of the school district. I was initially very scared of this change. Would he be cared for the way he was cared for at Jump Start? But, the district came to my home to learn about JB and eventually his teacher came. This was important to me. It made me feel like they wanted to know JB.
During this time, we were also finally getting ABA set in place. ABA is such a different animal. After testing, they determined that JB needed 25 hours of therapy. This meant 12 hours of preschool and 25 more hours for therapy. That's 37 hours a week of work for a 3 year old child. I get early intervention, but I also know that kids need to be kids. Because we didn't know any better, we went with it. You want the best for your kid. And you believe what you are told. So JB went to school from 8:30-12:00, then had therapy from 3:00 to 7:00. It once again left us with a crazy schedule.
I took JB to the bus, my hubby picked him up from school and took him to daycare on his lunch break. He had to be off by 2:30 to get JB home for therapy. I came home from my job as fast as I could so my man could go back to work.....that's when therapy took place. It was insane. Too insane. My husband and I got to a point where we really didn't know if we were coming or going!
This schedule went on for 2 years and eventually really cost my husband his job. They couldn't work with our schedule anymore.....so, we spent 7 months on unemployment. That's a whole different animal and story in itself. One I will share when the time comes. But for now it's about JB, so I will get back to that.
Between school and ABA, JB was struggling. We were struggling to have a family life. We started questioning things and asking when JB was going to be allowed to be a kid. We knew therapy was important. We knew we were seeing great changes....but at what cost? We were asking a 3-4 year old to "work" really for almost 40 hours a week. Once my husband lost his job, we really started thinking about what was happening. For our family to survive, we had to take charge. It's so easy to let the ABA tell you what to do because you don't know. But, they work for us. Not the other way around. It was then that we made a choice.....to cut hours.
I would like to say that I am happy this happened. I am to some extent but....every year there was something more. The question of how to get JB where he needs to be. That question of schedule still came up. I thought that when Kindergarten came around, all would get easier. It only posed new questions and yes, new problems.
A story for another day.....
TTFN
Martha
Sunday, August 28, 2016
Sunday, August 21, 2016
Nothing More than a Feeling
Hi all,
I am taking a break from my story to talk about feelings. I have been reading a lot of articles, interviews, blogs.....no one ever really talks about feelings. Is it a taboo topic? If I have a feeling, does it mean I am being selfish?
Feelings are normal. And in this roller coaster ride with autism, feelings happen. Everyday is different and it's not always easy. I cried a lot when JB was first diagnosed. In fact, I cried so much and stressed so much that my face completely broke out. I started dressing up and wearing a lot more make up thinking that it would help me hide my angst. Coworkers/friends were constantly asking how I was staying so positive. What they didn't know was that I would come home, do my mom duties, then get in the shower and sob! Truth be told, I still do this. Just not everyday anymore!
I feel like life has changed so much in so many ways. I have lost friends but also, I don't make an effort. My life is work, getting to therapy, making sure my daughter is surviving.....and then dealing with my husband. People think of autism as just bad behavior. It's not. I struggle taking JB places because I really cannot visit as I am so busy running around after JB or the house is overstimulating and JB can't handle it. It can be tiring.....people don't understand.
My husband, you ask? When I say dealing with my husband, well, he is also dealing with autism in his own way. He struggles with the idea that the future isn't what he thought it would be. When JB is down, my husband is down. When JB is happy, my husband is happy. Who supports him? I do! I have to! He deserves to be taken care of too!
I really think it's just how and when we decide to deal with what autism is. In the beginning, my husband was my rock. Now it's my turn for him. Something I will say though, is that at times I feel like I have put up a wall. Almost like I go numb....it's hard when your kid is screaming profanities at you, spitting on you, telling you that he hates you. JB is just a baby really....only 6. But when he tantrums, holy moly people! At this point, my wall and numbness kicks in. That doesn't happen for my man.....I am not saying it's not hard. But I can't let it bug me, rule me. Instead the aftermath rules me, a 6 year old who says he hates feeling this way. That he hates breaking my heart. That he can't stop himself. That's the kick in the gut!
BUT it's not all sadness, folks. JB has the best sense of humor and tells great jokes. He plays well with his sister and loves being around her. He also gives the best hugs! And he is learning so fast....we really are a happy family with hiccups that happen along the way! Who doesn't have hiccups? I mean, that is life after all! And you surround yourself with supports--family members, and friends (like BG, KM, and AJ--thanks gals for making sure I take care of myself!). You count on them and talk with them so you don't get lost! And so you keep the laughter going!
Keep reading. I'll be back in a few days!
TTFN
Martha
I am taking a break from my story to talk about feelings. I have been reading a lot of articles, interviews, blogs.....no one ever really talks about feelings. Is it a taboo topic? If I have a feeling, does it mean I am being selfish?
Feelings are normal. And in this roller coaster ride with autism, feelings happen. Everyday is different and it's not always easy. I cried a lot when JB was first diagnosed. In fact, I cried so much and stressed so much that my face completely broke out. I started dressing up and wearing a lot more make up thinking that it would help me hide my angst. Coworkers/friends were constantly asking how I was staying so positive. What they didn't know was that I would come home, do my mom duties, then get in the shower and sob! Truth be told, I still do this. Just not everyday anymore!
I feel like life has changed so much in so many ways. I have lost friends but also, I don't make an effort. My life is work, getting to therapy, making sure my daughter is surviving.....and then dealing with my husband. People think of autism as just bad behavior. It's not. I struggle taking JB places because I really cannot visit as I am so busy running around after JB or the house is overstimulating and JB can't handle it. It can be tiring.....people don't understand.
My husband, you ask? When I say dealing with my husband, well, he is also dealing with autism in his own way. He struggles with the idea that the future isn't what he thought it would be. When JB is down, my husband is down. When JB is happy, my husband is happy. Who supports him? I do! I have to! He deserves to be taken care of too!
I really think it's just how and when we decide to deal with what autism is. In the beginning, my husband was my rock. Now it's my turn for him. Something I will say though, is that at times I feel like I have put up a wall. Almost like I go numb....it's hard when your kid is screaming profanities at you, spitting on you, telling you that he hates you. JB is just a baby really....only 6. But when he tantrums, holy moly people! At this point, my wall and numbness kicks in. That doesn't happen for my man.....I am not saying it's not hard. But I can't let it bug me, rule me. Instead the aftermath rules me, a 6 year old who says he hates feeling this way. That he hates breaking my heart. That he can't stop himself. That's the kick in the gut!
BUT it's not all sadness, folks. JB has the best sense of humor and tells great jokes. He plays well with his sister and loves being around her. He also gives the best hugs! And he is learning so fast....we really are a happy family with hiccups that happen along the way! Who doesn't have hiccups? I mean, that is life after all! And you surround yourself with supports--family members, and friends (like BG, KM, and AJ--thanks gals for making sure I take care of myself!). You count on them and talk with them so you don't get lost! And so you keep the laughter going!
Keep reading. I'll be back in a few days!
TTFN
Martha
Wednesday, August 17, 2016
Jump Start and Butterflies
Hello all and welcome to blog #3,
Thanks to all of you for coming back and reading about my adventures. I love being able to share my story, and what a story it is.
We last left off with JB in a full body cast. After six LOOOOOOOOOOONG weeks, the cast was removed and we spent another week working on learning how to walk again. Poor JB had lost so much muscle while in that cast. He was like jello! Between physical and occupational therapy sessions, we got him up and moving pretty quickly. In fact, by the end of two weeks, you would never have known that JB had been in a cast.
At this time, JB went without ABA therapy and because we had to cancel assessments, our timeline with ABA therapy changed quite a bit. But here is where Jump Start comes into play. Jump Start is a very special preschool for children with autism. The school offers supports that teach children everyday skills using techniques specifically designed for kids with autism. They come to the home and visit families. They assess skills and make goals. JB had goals that fit his needs. One of those goals was to teach him to use sign language to communicate. He was making some sounds but to be honest, I never thought I would hear him say a word.
Taking JB to Jump Start was hard. I took him to daycare, my husband came home from work and took JB to preschool. He then went back to work. On his lunch, he picked JB up from Jump Start and took him back to daycare. I was in charge of pick up from daycare when my day was done! It was a lot of back and forth. Lucky for me, I was about to be on my own summer break and that gave a much needed break to my husband's crazy schedule.
I loved taking JB to school. I loved watching him go into the classroom and start an activity. It made me smile to see him participate. And I saw so much progress, a real change. More interaction....and then it happened.......
Thanks to all of you for coming back and reading about my adventures. I love being able to share my story, and what a story it is.
We last left off with JB in a full body cast. After six LOOOOOOOOOOONG weeks, the cast was removed and we spent another week working on learning how to walk again. Poor JB had lost so much muscle while in that cast. He was like jello! Between physical and occupational therapy sessions, we got him up and moving pretty quickly. In fact, by the end of two weeks, you would never have known that JB had been in a cast.
At this time, JB went without ABA therapy and because we had to cancel assessments, our timeline with ABA therapy changed quite a bit. But here is where Jump Start comes into play. Jump Start is a very special preschool for children with autism. The school offers supports that teach children everyday skills using techniques specifically designed for kids with autism. They come to the home and visit families. They assess skills and make goals. JB had goals that fit his needs. One of those goals was to teach him to use sign language to communicate. He was making some sounds but to be honest, I never thought I would hear him say a word.
Taking JB to Jump Start was hard. I took him to daycare, my husband came home from work and took JB to preschool. He then went back to work. On his lunch, he picked JB up from Jump Start and took him back to daycare. I was in charge of pick up from daycare when my day was done! It was a lot of back and forth. Lucky for me, I was about to be on my own summer break and that gave a much needed break to my husband's crazy schedule.
I loved taking JB to school. I loved watching him go into the classroom and start an activity. It made me smile to see him participate. And I saw so much progress, a real change. More interaction....and then it happened.......
Butterflies!
The thrill of a lifetime, was sitting on my back porch and JB tracking something so simple and yet, so beautiful. He followed a butterfly with his finger, pulled my arm and said, "Butterfly!" I was so overjoyed.....I couldn't believe it. I was jumping and crying and hugging my boy....that moment really gave me hope! That was a beginning for JB....he started acquiring lots of language. He had a voice and was using simple words. And it all started with a butterfly.
Butterflies are beautiful. But for me, they are a symbol of hope. I love seeing a butterfly because it makes me think about that very special day. JB's small, but HUGE, accomplishment. The start of his voice....next time you see a butterfly, I hope it brings you a happy thought as well!
Our time with Jump Start was just not long enough....at the age of 3, the kids move on! But for us it was just a new journey. A new school, a new schedule, and ABA therapy. All things I am eager to to tell you about! And trust me, it's a bumpy road....but it's my bumpy road and that's okay!
TTFN
Martha
Wednesday, August 10, 2016
2 weeks and all is a blur!
Hi all,
Welcome back for blog #2. When I last left you, my son had been officially diagnosed with autism. The two weeks that followed were somewhat of a blur! Honestly, they were. I fought so hard to find out what was wrong with JB, then he got a diagnosis and things became so fast-paced. I was taking kids to daycare, going to work, answering calls and making appointments on every break, picking up kids, running to therapy, making dinner, getting kids in the bath, getting them to bed.......it was all just fast and crazy.
Within those two weeks, I was able to get set up with an ABA (Applied Behavior Analysis) company and we got on a wait list for a very special school called JumpStart! Both of these things were exciting to say the least as I knew they would help. I just didn't know how hard it would be....and we will talk about that soon because I have to share the.....
Welcome back for blog #2. When I last left you, my son had been officially diagnosed with autism. The two weeks that followed were somewhat of a blur! Honestly, they were. I fought so hard to find out what was wrong with JB, then he got a diagnosis and things became so fast-paced. I was taking kids to daycare, going to work, answering calls and making appointments on every break, picking up kids, running to therapy, making dinner, getting kids in the bath, getting them to bed.......it was all just fast and crazy.
Within those two weeks, I was able to get set up with an ABA (Applied Behavior Analysis) company and we got on a wait list for a very special school called JumpStart! Both of these things were exciting to say the least as I knew they would help. I just didn't know how hard it would be....and we will talk about that soon because I have to share the.....
SETBACK!!!
It's important to remember that JB was only 2 years old at this time and two weeks after the diagnosis, JB had a freak accident. He went to kick a ball. He missed and his body twisted. He went into a state of shock. We took him to urgent care and they called an ambulance. I, of course, rode with my little guy to the ER. He was admitted instantly and given morphine. JB had broken his femur!
What a crazy experience that I will NEVER forget. I remember the doctor coming in. The nurse closing all the curtains in the room and shutting the door. It was weird and my hubby wasn't there yet! The doctor proceeded to talk to me about the injury saying that the femur is the hardest bone to break. The doctor then started asking me about abuse. I know it was his job! I know that! I get it, my dad was a police officer for 25 years....I get it, I got it!
But it so rocked my world.....I just started bawling, telling the doctor he was crazy for asking. It TRULY was a freak accident! The doctor then hugged me tight and expressed that he was just doing his job! I know he was.....I am thankful that he cares that much about kids.....that he cared that much about my kid.
JB was then taken for casting. He ended up in a full body cast! I am not sure how my family survived those 6 weeks. I had to change his diaper and rotate him every 4 hours. All while taking care of a 5 year old and working full time. Let me tell you, I cried a lot.....but you do what you have to in tough times. And JB gave me strength. I don't know how he did it, but he smiled the entire time.....yep, the entire time! Cast and all, he was happy! And that saved me! That saved my husband....
We had wonderful people around us, who wanted to help. They made us dinner.....made me cookies.....watched the kids so both my hubby and I could go to work. It takes a village to raise a family and boy, I am thankful for my village! It was a tough 6 weeks. We survived and moved on to the next phase, ABA and JumpStart! I cannot wait to share my next post as great things happened! So please stay tuned!
TTFN
Martha
Wednesday, August 3, 2016
The beginning of Autism
Hi all,
This is my first post as a blogger.....I would love followers but to be honest, this is about an outlet for me. My thought is that if I can help anyone through my experiences, YAY!!! because we all need help every now and then.
Before I begin, THANK YOU RP for encouraging me to do this.....without your help, I would not be writing in this format. I am so glad I am opening up.....you have no idea!
My life has been interesting to say the least. Going along normally, went to college, got married, got a job, had kids (a girl, then a boy)......but when my boy turned 2, my world turned upside down.
This is my first post as a blogger.....I would love followers but to be honest, this is about an outlet for me. My thought is that if I can help anyone through my experiences, YAY!!! because we all need help every now and then.
Before I begin, THANK YOU RP for encouraging me to do this.....without your help, I would not be writing in this format. I am so glad I am opening up.....you have no idea!
My life has been interesting to say the least. Going along normally, went to college, got married, got a job, had kids (a girl, then a boy)......but when my boy turned 2, my world turned upside down.
AUTISM
I knew something was wrong as my son was not making milestones. I had to fight. I had to keep asking questions. Autism was furthest from my mind......but I knew something was wrong. One summer day, my bestie, said she thought JB had autism. It really pissed me off! I was seriously pissed at her and we did not talk for far too long. But she was right.....I knew it in my heart!
He did not respond to his name, he did not make eye contact, no voice, no eating, no walking....just a baby who liked to breastfeed and be carried.....that's it, nothing more. The one diagnosis we did get was low muscle tone, which led to therapy. That was a start. Then we also got a recommendation to our local regional center. Through them, we hooked up with a psychologist......and after that, an assessment.......oh man, that assessment! I will NEVER forget it......
December 30th, 2011.....My hubby and I were told. That word again......that horrible word. I bawled! My husband bawled! BUT through tears, I begged the Psych to just help us help JB. That was my goal, right then and there.....
So this blog is my journey to right now....past and present....my life with autism. As hard as it is, it has also been a wonderful gift. JB would not be JB without it. AND I LOVE HIM......more than anyone will ever know!
I hope you will follow my blog....learn, live, cry, and laugh with me as I take you all with me through this journey.
TTFN (Ta Ta For Now)
Martha....an autism mom!