Obsessions-I thought we had this one in the bag! I was wrong!
Jordan, now 17 and a senior was running for president of his JMG class at school. "Man, he has come so far", I thought so proudly! The kid who once wouldn't look anyone in the eye, who wouldn't talk to his classmates, had zero tolerance, and much less confidence is running for an office? Wow!! This is so cool! He is gonna win, I am gonna have something else to brag about....my chin was up, my hair tossed back...so awesome!
Then reality hit. Jordan still has Aspergers. No doubt about it.
Now, normally or nuerotypically, this would stress a normal kid out. They would plan, they would make posters, they would talk to their peers.
Jordan was STRESSED.
He didn't just plan, he made and action plan, with steps. He made a game plan, with moves! He made a combat plan, with an attack!
He didn't make a poster, his teacher of Graphic Arts made a huge 3X12 poster, VOTE FOR JORDAN.
He didn't just talk to his peers, he talked to everyone! The teachers, the staff, the kids, everyone!
His speech was amazing! He practiced it until he couldn't do it anymore and it was phenomenal!
All of this was, and is so positive. It was an amazing experience. Honestly though, it was hard. He learned how to improve his speech writing skills. Jordan worked on posture and projecting an image with body language that was warm and caring yet strong. He worked on voice inflection and tone. He didn't do homework for over a week, except this speech.
In the end he lost by a half of a vote. You see the faculty got to vote too at Jordan's school, since it is an Alternative High School, the leaders of the school are in a program called JMG or Jobs for Montana Graduates. It is a pilot program through the business department at Paris Gibson Alternative High School.
So the students and faculty work as a team. The students decided that the faculty vote should be worth 1/2 of a vote each and the students 1 vote each. The entire faculty voted for Jordan. But one young lady, who will be a wonderful president, won. Jordan was devastated. Heart broken, he came home with blinding tears. This was a place so important, so life changing for Jordan, he wanted to have such a place of importance. Disappointed, he tried to tell me how he felt. Through tears he talked of feeling betrayal from those that said they would vote for him. He told me how he cared more than anyone else in the school, that he wanted to help change their lives the way that his life had been changed at Paris. He wanted to feel like he was valued and rewarded for the hard work he had put in the year before leading the way for this years new class of JMG students. How could she have beat him? He wanted to quit, to have justice by not being in that class at all. I did not cry once listening to him. Instead I tried so hard to console, to encourage, to empathize. But the minute he left with his dad for work, I was that mom....calling the adviser of the JMG class, asking what happened, and reaching out for help!
I wish I could tell you I handled this perfectly with her. I don't know. I shared what Jordan was going through, then I shared my mom's heart and the tears started flowing. "Don't they know how much Jordan has overcome?" "Can't they see how much he cares about them and the school?" My heart was hurting knowing how bad this had hurt Jordan. She was amazing! She listened, she too wished they knew, but she knew this was Jordan's story to tell. None of them know he has Aspergers or how much he has overcome. If you don't have a child with a special need, it is hard to explain this roller coaster we live in. She asked "Is he there? Can I talk to him?" He had already left for work. "Please have him call me" she asked.
It turns out, Jordan only thought he was on the schedule at work-he wasn't. But, it was amazing what a car ride with his dad did for him. When he came home, I asked him "Do you want to go talk to your teacher"? I had Boston, our golden retriever with me. He buried his face in his fur, and said yes.
We got there and the most amazing thing happened. This teacher, who works so hard all day, had waited for Jordan. It was almost 5 o'clock. He walked in and she welcomed him with open arms and compassion. The time she took, telling him how much she believed in him, needed him, and made him feel so valued was awe inspiring. As I sat there, she let him know why it was so important that he tried, that the entire faculty was overcome when they listened to this young man, who once wouldn't look at any of them, gave a speech that blew their socks off with poise, confidence, and humor. She told him how important it was that he stay in JMG to be a leader, to mentor, and to give other kids hope. Jordan, you are going to have to tell your story. These kids need to hear how you have overcome so much. She said she needed him to show them how to work hard, to be committed, and to overcome. Then, a miracle happened, Jordan opened his heart up and shared, really shared how he felt, and what it took to go through this experience. Nothing could have made me prouder in that moment than to listen to Jordan and his teacher connecting, learning and growing through the pain of defeat. He showed raw emotion, but with clarity, expressed his feelings. He discussed the pain, the betrayal he felt, and the disappointment of loss. She sat with him and went through these things patiently, and turned what could have been a terrible day into a pivotal turning point. She did something that we can all learn from she sought to understand his heart, then she helped him understand a bigger piece of the world. I wish I could have recorded that afternoon now to show you everything that happened. Defeat became the biggest success. Relationships became more important that justice. For Jordan this was monumental! For me it was another miracle in his life.
Jordan is now Vice President of JMG. He is in charge of the first ever digital yearbook that will be affordable to all of the students at his high school. When you see and event or party happening at Paris, please know that my son is in charge of the social committee!
Am I proud? Yes oh yes! But there is another word that is better suited. I am humbled by the power that relationships have in our lives. Nothing is better than witnessing the power of relationships. Do I have something to brag about? You bet!
A son that has overcome so much adversity!
Paris Gibson Alternative High School that has teachers that believe in each students ability to overome any obstacle and succeed!
Relationships that make a difference everyday in my life and more importantly the life of my son.
A loving God, that gives wisdom to me as a mom of this special son!
My chin is up-quivering a little-my hair is tossed back, mostly from the wind! Most of all my heart is full.
Thursday, September 26, 2013
Tuesday, July 16, 2013
Respite
I was in a meeting last month and a lady suggested that the insurance agencies cut respite out of their budget. One of the only times I have ever gotten dizzy from my blood pressure shooting up for sure! She went on to suggest that this was a "vacation for the family, so they could go get pedicures, or go out to eat". First I was dumbfounded! Really? I understand this person was young, no children, none with disabilities, and idealistic. I couldn't help but speak up. Respite by definition:
Jordan and I at the Capital in Helena.....Mental Health Day....
res·pite
/ˈrespət/
Noun
|
Respite can be with a family member, a friend, or a professional agency. When Jordan became an adolescent and was so challenging we were so blessed to have Craig, a cousin who also was a nurse who understood Jordan as a close family member when we needed him. He took Jordan for the afternoon, the weekend, and introduced him to different things. Running their hunting dogs, canoeing, Big R sporting good store, and of course-Mt. Dew! It was great for Jordan, to be in a different social setting, to get to know family, and to discover new things. We have other friends who would take Jordan and just let him hang out at their house so Todd and I could get away. We were so blessed by these people who loved and spent time with our son. It was great for our family to have some peaceful time together to focus on our other kids and needs. Yes we have to learn to do this all with Jordan around, but we are so much better for having a much needed mental health break. It is a strategy to help families experiencing distress to be able to refocus. It provides wellness and enables parents to better care for their children.
One common misconception is that you can leave these children with babysitters. We tried. Our babysitter was so overwhelmed as Jordan got older, she would go home in tears. Trying to be brave, she would come back-we also paid well. After a while she got braver and told us she couldn't do it anymore. I so appreciated her honesty.
Today I can't imagine Jordan needing respite, in fact, mom's are actually looking to him to spend time with their ASD kids! He told me the other day he went to his friends house for a BBQ, and they all squirted each other with dish soap and went on the slip and slide! What? Ok they are lifeguards, but he would have never put dish soap on himself and done that 4 years ago-or 3 years ago. Friends!! Yes! Cut loose on the slip and slide? WOW!! But 4 years ago respite was a blessing, a lifesaver, a needed thing for our family to be emotionally ok, reboot and face the next challenge.
Respite is needed! It is okay to let someone else care for your child so you can breathe easy, plan your meal menu, spend time with other kids, go to a workshop, or get a pedicure! Mental Health is so important, take care of yourself parents and give yourself a break! I know how much you love your child and want the very best for him/her.
As for insurance paying, medicaid pays in most states, and other private health insurances are usually great about respite. Take a moment to ask, let go of the guilt, and be the best parent you know how to be! Find natural supports, people you know and trust, family members and friends. Most are happy to be asked when they know your need. Be brave and humble, take time to ask for the help you need! Your family will be blessed when you do!
Now-go get that pedicure!!
Kim
Monday, July 15, 2013
Prepare......
"Prepare Here" this is gonna be hard Jordan!
Hurry up, No time to mess around, and We need to leave now are phrases we try not to use in our home! Time is needed in our house when we are going to do something new, head out the door, have people over, do chores....or get off that amazing video game.
If you have a child with Aspergers, ADD, ADHD, or other SED, you probably know the key to getting to the next item on the daily to do list is transition time. Jordan, is now a young man heading into his senior year of high school. I think it was in pre-school we figured out how much time he needed. Since he could read both analog and digital at two and a half, it was fairly easy to let him know the time. If he was watching Thomas, I could say "when Thomas is over we are going to..." But I had to stop the video, get down and look him in the eyes, then let him know so he would acknowledge me! Time consuming for sure! I
remember so many times doing this, and Jordan raising his right eyebrow, and smiling with those dimples with that brain thinking...technicality, where is the technicality here? If he could think of something I missed so he didn't have to stop what he wanted to do, I had to start the transition over. Sometimes it didn't work, and you know how much fun it is to pick up your child mid meltdown when you are trying to move from one task to another. At MOPS, church, pre-school. People would say "you need to spank him more"! or "Discipline that kid"! We would all be in tears by the time we made it home.
remember so many times doing this, and Jordan raising his right eyebrow, and smiling with those dimples with that brain thinking...technicality, where is the technicality here? If he could think of something I missed so he didn't have to stop what he wanted to do, I had to start the transition over. Sometimes it didn't work, and you know how much fun it is to pick up your child mid meltdown when you are trying to move from one task to another. At MOPS, church, pre-school. People would say "you need to spank him more"! or "Discipline that kid"! We would all be in tears by the time we made it home.
One thing I learned never to do was to bargain with Jordan. But I did make a very useful chart. I call it my "If and Then" Chart. If you pick up the toys, then you can have your trains. If you throw a fit, then you will lose this privilege. From the time my kids were really little we used the "If and Then". I had my kids involved during the process of the making of the chart for both positive rewards, and negative consequences. I found I just needed to have them read the chart when an "If' happened. No yelling, and no emotion from me for them to feed off of. I made the first one out of poster board and let the kids put stickers on it. We added and took away from that chart often, as the behaviors changed and as needed. I also made the "when and then" When its time to go to bed....Then this is what we do. No nagging! Did I have to redirect? Absolutely!! But for me, and a few others, this has made transitions so much easier!
Now Jordan has had to learn new transitions. From teaching swimming lessons to five year old kids, to teaching 8 year old kids. Being at school 7 hours a day to being at a job for 8 hours a day. Orientation was so hard!! He had to be perfect at the job before he even started! So I logged into YOU TUBE and looked up life-guarding, and looked up Swimming coaches. After about twenty minutes of what the job "looked and felt like" on the computer the zing went out of his anxiety. I had him take a minute and breathe, think about what you know. Think about being at the pool and what you saw your life guards do. What did your swimming teachers do? Write these down, and meditate. (more on meditation later). One of his Karate teachers told Jordan what would turn out to be one of the all time great pieces of advice, "When you know you have to do something hard, prepare here!" As he was telling Jordan this he reached out and put his hand on Jordan's chest over his heart with such sincerity and seriousness. "You are responsible for your heart and mind, Prepare here!" Jordan remembered those wise words during this last transition too.
Prepare here......over your heart, in your being.
Meditate on the Word of God, fill your heart with peace.
A favorite verse for Jordan is;
Philippians 4:6
New International Version (NIV)
6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
He came home from Orientation today with the biggest smile on his face! He made three new FRIENDS, (yes I do bold that word) loved his time with the team, and is ready to be the best he can be. Life-guarding is hard, I am not sure he was totally prepared for the physical and mental toughness. But the instructors were amazing with him and all the youth. They made sure they all understood, and didn't leave that pool until they could all do the work-there were 17, which is a big group in his class. He did take time to talk to the instructors and explain that he was an Aspergers kid so they were aware in his words "Just in Case". I am so proud of how Jordan used the skills he has learned to take time, advocate for himself, breathe, pray, and "prepare here".
My first IEP
Jordan was in 7th grade when he was diagnosed with Aspergers....From the time he was small, he was different. The first IEP , well that was a hard day, but I remember it well. For those of you who aren't familiar with the term, an IEP, or Individualized Education Program, contains goals and a description of services that will be included in the education of children with disabilities to help them reach educational and developmental milestones according to their individual needs.
Jordan was finally healthy and was signed up for pre-school! We were all so excited! None more than me who selfishly needed a break from this little guy with more energy than the Edison Electric Company! Secretly I dreamed of blissfully reading a book, or cleaning the house uninterrupted or just having a cup of coffee without an event. First he had to get through the screening process. He is a smart little guy, taking the electric plates off all of the outlets at two years old. How hard will this screening be? Deep down though, I was really hoping maybe they could tell me why he was so, well, different. The total meltdowns, the climbing the walls (literally), the jumping off of the fridge over and over, not wanting clothes on, and not interacting with other toddlers but playing alone, when he got upset he would run and flap those little bent arms like a baby bird ready to fly-I think he would of, if he could have!
The day was bright and sunny, unlike the morning struggle to get ready to go. "Don't you want to go to school like Mandi?" I asked as he wanted to be like his big sister, so this worked. A nice plus was this was the screening that had Occupational, Physical, and Speech Therapist, along with the Psychologist, Teachers, and special education teachers. This was because we had noticed all of the different things about Jordan along with the therapist I worked with. I don't know now, on my own, if I would have gone so soon to this early intervention had it not been not for the OT that I worked with at the hospital recommending it for Jordan. He was three and a half years old.
The screening took two days, and then they said they needed time to evaluate the results and we could come back when they called and scheduled a time for the results. It didn't take long, they called by weeks end and set up an appointment with Todd and I the following week. I should have brought a huge box of tissues! Don't you think that should be included in the stuff to bring along items, along with birth records, and shot records?
I remember walking in and being ushered into a room that was as big as a living room, but with two long eight foot preschool sized tables line up facing a white board. On one side there were chairs for Todd and I to sit in. On the ends and along the other side were ten more chairs for the "professionals". It seemed like they had brought a small army of people. Talk about being intimidated! As they went around the room, one by one they told us who they were and what role they played. I was not going to remember all of their names and my eyes kept straying to the white board behind them. It was full of words about my son. Two stood out to me; Happy and Tries hard. Honestly the rest of the words, which covered the white board behind them, overwhelmed me. So many deficits.
The Special Education Teacher began to talk about this thing called an IEP that they had written up for Jordan. To get the IEP written they had done many different kinds of testing, motor skills, behavioral, IQ, on and on she went. We really tried to keep up but I know I just kept hearing "very low", or "abnormal", or "not at age level", except the IQ...that was "very high". He is three and I have totally messed him up. I remember the tears began to flow as they kept talking about this "sensory integration", and "doesn't interact with peers". How could we have messed up this bad? I blurted out "Someone else needs to parent him, because I can't, I have totally failed my child"!! At this point someone finally realized that the parents in the room were about to have a meltdown. You have to understand the white board was FULL of deficits! Todd remembers around thirty problems that needed attention. These are the things that your child does not do well, doesn't know how to do, or does abnormally. And my child's deficits were on the two whiteboards that filled the wall behind the professionals we were looking at. Now, I had tried to research IEP, Individual Education Plan, for myself. I thought that it was a wonderful document that showed how the educators were going to help my son reach goals and be successful. (and it is now) Back then, it was full of sentences I didn't know how to interpret.
I do remember this; Jordan has clear scores that indicate ADHD, and SID. Sensory Integration Disorder. Sensory what??? They did test him for Autism, but his IQ scores are way to high to indicate that. He also has motor skill delays, both fine and gross. In addition, he shows OCD tendencies. (Really! Remember my blog about trains :o) ) My thought really was "what did I do to my child"? They asked us if we had any questions. Questions?? I couldn't even think. I know it was horrible but I honestly couldn't think of anything that actually made sense to ask. They went on to talk about his constant ear infections affecting his speech so he would need a Speech Language Pathologist to work with him. PT and OT for the motor skills. Dietitian to address his Hereditary Fructose Intolerance, and Ketotic Hypoglycemia.
What did all of this mean? Could Jordan go to preschool? Would he ever really fit in? So many questions!! My husband and I asked to take the IEP and the evaluations home so we could read and try to understand them better. Reluctantly they "allowed" us to do this. They wanted us to sign them right then and there, but we were wise enough even back then, to know we needed to read and understand it. We scheduled another IEP meeting and left with copies in hand. Thankfully, the therapists that I worked with, were kind and patient as they read it with us and step by step explained it. We put our own comments in the area where the Parent Comment section was. No one had told us at the meeting we could. Also, no one explained about the weighted vest, the bubble seat, or the wedge at the meeting, so I am so glad my OT friend helped us understand how this would help Jordan focus.
I am overwhelmed at the horrible flashback this is conjuring up inside of me. My husband asked "horrible or depressing"? Both!! What must it be like for those who have no therapist friends, no advocates, and no support? For those of you who find yourself in that position, know you are not alone! In sharing this journey, I hope to become a little of that support for you! This blog will be continued as soon as I go and re energize my heart and brain!
Till the next (all about IEP) meeting....
Kim
- Jordan and his little brother
Walking on Eggshells
I am taking this out of one of my journals...
Wow, one of those days. School was really bad today. There is a boy, who goes to Jordan's school who I think has a primary mission in life to make Jordan explode. The kids know that Jordan is dealing with anger issues, and some of the kids are compassionate and kind. But middle school is not the easiest place to find compassion. In this school, I sure had misconceptions and thought it would be better. Smaller School, Christian School, smaller student to teacher ratio.
Jordan came out of the school seething. I knew when I saw him it was not gonna be a good afternoon. He had both fists clenched, his head was cocked off to the left side, and his jaw was clenched. If that isn't bad enough, his teacher was following him out. I took a very deep breath and said a prayer for calmness. I always try to start off the same;
Hi Jordan!
Hi Mom....(ooooh I can hear the frustration)
Then:
Teacher: Kim, Can I speak to you?
Me: Of course. (sigh)
Teacher: Jordan had quite a time of it today. We were in science and Jordan was giving a report. He did great until the question and answer time when **** asked him a question that was totally off topic.
Me: What was the question? (I dread the answer)
Teacher: He asked "Why do you wear that shirt almost everyday?"
Teacher: Jordan proceeded to answer about how it was his favorite color, he like the texture...and the kids all started laughing.
Me: And then...
Teacher: Well, Jordan through his report down and started to clench his fists, and jaw, sorta growl at the class, which caused some of them to laugh harder. That is when he started yelling at them to be quiet, and left the room, pushing chairs out of the way on the way out the door. I followed him, and he just couldn't calm down. Luckily it was the end of the day so he gets to go home.
Me: Thanks for letting me know.
Inside do you want to know what I was really thinking? I was dying. Why. Why does this happen? Why are kids cruel? Why can't the teachers control the kids? Why does my son wear that shirt all the time? Why can't we have a "normal" day? Why. Why are we gonna pay for the rest of the day?
I knew two things as my other two came toward the car. One, I had to tell them not to talk on the way home because Jordan was in a mood. Two, my two other kids hated that and didn't think it was fair. It isn't fair to them, but it is our life, our family and we have to work together. Problem is, we have no idea how really, we are winging it. Walking on eggshells. Waiting for the next eruption and I don't mean Mount St. Helens. This is not fair to Mandi and Colton, and I have little to no idea how to give attention and energy to them after Jordan sucks it all out of me. We are one miserable family these days.
Okay, we are in the car. Odd day, so Jordan is in front. He slams his fist on my dashboard. Phew it didn't break. What to say? I try:
I'm sorry
Then it begins...
I hate that school!!! I hate those kids, I hate all of them!!! I am not going back, you cannot make me....
That rant goes on and on and on....remember the train. This one is a speeding bullet train, not slowing down and just gathering steam. I spend the rest of the day and evening listing to him rant, scream, kick dirt, yell at his siblings, rage, until finally he just breaks down and cries. He hates being different and knowing he is. I think that is part of it. Realizing he does not see things, talk about things, or have much in common with kids in his grade. We try to touch him, to rub his back like I used to, to get close. But, it takes literally hours to get him in a "sensible" state of mind. Then, he is exhausted. I feed him, and finally he asks if I can rub his back. It is now 8:30. School was out at 3.
I go to check on my other kids. Todd is still at work until 10:30. I hug them, tell them I am sorry. I thank Mandi for taking care of her brother, who, in 2nd grade does not understand what is going on with his big brother. I read with them, sometimes, Mandi reads and does her amazing voices. I smile, I needed them today to help me see "normal" at bedtime. After the kids are all in bed I go in my room and cry. I am so alone. I am not prepared to handle this. To try and love all of these kids, to give them all of my energy when I don't have any left. I get on my knees and cry out to God. Why? More than that...Please help us. Help us not to have to live on eggshells. To be normal. To be happy. We need help. Where do we turn? I know I do not have any answers tonight. Todd comes home and I share with him. We are struggling to see the light.
Things have got to be better tomorrow....right?
This was hard to write, to go back to. I have great news.....It does get better...Jordan was speaking to a group and said it best;
My reformation did not happen in minutes, hours, or days, but in years.
He still has grumpy days, but we do not walk on eggshells anymore! We face life head on, with kindness, compassion, and grace. When you see a mom with a kid having a meltdown, remember, she is probably having an eggshell day! Let's love each other! Smile, give her a hug, and tell her you've been there and its gonna be okay. We need each other!!
Here's to more Sunny days!
Kim
Sensory Processing and Trains!
Toddlers are full of joy and Jordan was no different. He loved trains.....I mean LOOOOOOVVVEEED Trains! We, of course, thought it was so cute this obsession with Thomas the Train. I mean who didn't love those sweet stories with great morals? Thomas had friends, he was a hard-working engine, and when he got in trouble, he owned up to it. Jordan however may have taken this train thing to a new level. The way Jordan played paralleled the tracks that those trains rolled on. He played along side of his peers, I am not using the word friends here you notice. His play crashed harder and louder than most runaway trains in the cowboy movies! He moved faster than most trains too, not caring about who he ran into (oh sorry Nana, have you always been there?) or knocked out on the way to wherever he was going. Trains and there tracks run parallel still in Jordan's life!
What I did think was strange was Jordan sleeping on his nest of trains. Do kids really do this? I thought only chickens put things underneath them when they slept. That has got to be so uncomfortable-although I never did get around to trying it-I knew if I lost an earring in bed and slept on it, I felt it and it wasn't comfortable! So, Thomas, Edward, Annabelle, Gordon, Diesel, Percy, and the conductor all slept peacefully under a little boy in striped overalls and a conductor hat. It was a sweet picture my little guy laying there peacefully, is blonde hair laying smooth on an angelic face full of dimples. (He has three, two when he smiles, and one right under his eye). When the trains were in the station all was quiet.
Another interesting thing Jordan did early on, was park under the couch. I don't mean just the trains, I mean all of Jordan and his trains. Now this would not be so strange if Jordan was under a couch say with those pretty claw feet that held it up off of the ground. No, Jordan held the couch up off of the ground. Or the couch held Jordan down? "What are you doing?" I would ask him. To which he would reply;
Nothing
"Why are you under the couch?" I would ask.
I like it!
This was not a futon, or light couch, nor was it a hide-a-bed, but just a normal three cushioned couch. Heavy enough that two men had to move it, but I could push it around myself. But here was my little guy laying underneath with the weight of it on top of him. Okay...
At this point he was around two years old, so we hadn't done preschool, we did go to MOPS, where I was called in to get him or calm him down often. I did have great friends who "let" us come for play dates We had a great family structure, with Grammy and Papa, cousins, and Aunts and Uncles close by. Grammy would watch Jordan for us. He was a handful, but she loved him. But this is when I began to really notice things were clearly different. Here is where I was really blessed too, you see I was the coordinator of a PT, OT , and SLP Rehab Unit for the hospital in our city. So, I had these wonderful people to ask "Is this normal?" I remember on OT in particular who I would go to for advice. She was amazing! I told her about the couch, the trains, climbing the walls, the meltdowns, and she asked "Is he autistic?" To which I replied "Autistic? No, he talks" (Looking back, the misconceptions I had or misinformation is why the Autism Awareness Month is so important!) I think she laughed...as I surely still looked puzzled. We began a journey that would lead to learning about Sensory Processing Disorder. She recommended I read the book "The Out of Sync Child", by Carol Stock Kranowitz, M.A. I highly recommend it too! I cried as I read this book, she described Jordan in so many ways, and helped me to understand a piece of my son. I love her introduction now:
Sensory integration dysfunction, now known as Sensory Processing Disorder (SPD), is not a new problem. It is a new definition of an old problem.
SPD can cause a bewildering variety of symptoms. When their central nervous systems are ineffective in processing sensory information, children have a hard time functioning in daily life. They may look fine and have superior intelligence, but may be awkward and clumsy, fearful and withdrawn, or hostile and aggressive. SPD can affect not only how they move and learn, but also how they behave, how they play and make friends, and especially how they feel about themselves.
- Carol Stock Kranowitz, M.A.
Did I know he had high functioning autism yet? No way!! Did I know he was different? Yes! Parents, here is where I will tell you to go with your gut. If you are thinking something is a little "off" don't ignore it. Don't panic either!! Embrace it, learn about it, learn how to see it as a gift. Yes, I will get to the 'valley's", and I do have a brighter view right now because I am sharing hope!
The train is still running in our house! Sometimes, we still have to tell Jordan to slow down and pull his engine into the wheelhouse. He will stop, take a breath, sometimes cock his head to one side and clench if he is really steamed, (LOL), but he understands and gets that train quieted. Sometimes, he even just rolls his eyes and parks it! And we still have that Rubbermaid tote full of Thomas and friends stored away for future generations. I treasure those trains and what they taught our family about ourselves, our journey, and my son.
Till the next station....
Kim
Trains.....
Toddlers are full of joy and Jordan was no different. He loved trains.....I mean LOOOOOOVVVEEED Trains! We, of course, thought it was so cute this obsession with Thomas the Train. I mean who didn't love those sweet stories with great morals? Thomas had friends, he was a hard-working engine, and when he got in trouble, he owned up to it. Jordan however may have taken this train thing to a new level. The way Jordan played paralleled the tracks that those trains rolled on. He played along side of his peers, I am not using the word friends here you notice. His play crashed harder and louder than most runaway trains in the cowboy movies! He moved faster than most trains too, not caring about who he ran into (oh sorry Nana, have you always been there?) or knocked out on the way to wherever he was going. Trains and there tracks run parallel still in Jordan's life!
What I did think was strange was Jordan sleeping on his nest of trains. Do kids really do this? I thought only chickens put things underneath them when they slept. That has got to be so uncomfortable-although I never did get around to trying it-I knew if I lost an earring in bed and slept on it, I felt it and it wasn't comfortable! So, Thomas, Edward, Annabelle, Gordon, Diesel, Percy, and the conductor all slept peacefully under a little boy in striped overalls and a conductor hat. It was a sweet picture my little guy laying there peacefully, is blonde hair laying smooth on an angelic face full of dimples. (He has three, two when he smiles, and one right under his eye). When the trains were in the station all was quiet.
Another interesting thing Jordan did early on, was park under the couch. I don't mean just the trains, I mean all of Jordan and his trains. Now this would not be so strange if Jordan was under a couch say with those pretty claw feet that held it up off of the ground. No, Jordan held the couch up off of the ground. Or the couch held Jordan down? "What are you doing?" I would ask him. To which he would reply;
Nothing
"Why are you under the couch?" I would ask.
I like it!
This was not a futon, or light couch, nor was it a hide-a-bed, but just a normal three cushioned couch. Heavy enough that two men had to move it, but I could push it around myself. But here was my little guy laying underneath with the weight of it on top of him. Okay...
At this point he was around two years old, so we hadn't done preschool, we did go to MOPS, where I was called in to get him or calm him down often. I did have great friends who "let" us come for play dates We had a great family structure, with Grammy and Papa, cousins, and Aunts and Uncles close by. Grammy would watch Jordan for us. He was a handful, but she loved him. But this is when I began to really notice things were clearly different. Here is where I was really blessed too, you see I was the coordinator of a PT, OT , and SLP Rehab Unit for the hospital in our city. So, I had these wonderful people to ask "Is this normal?" I remember on OT in particular who I would go to for advice. She was amazing! I told her about the couch, the trains, climbing the walls, the meltdowns, and she asked "Is he autistic?" To which I replied "Autistic? No, he talks" (Looking back, the misconceptions I had or misinformation is why the Autism Awareness Month is so important!) I think she laughed...as I surely still looked puzzled. We began a journey that would lead to learning about Sensory Processing Disorder. She recommended I read the book "The Out of Sync Child", by Carol Stock Kranowitz, M.A. I highly recommend it too! I cried as I read this book, she described Jordan in so many ways, and helped me to understand a piece of my son. I love her introduction now:
Sensory integration dysfunction, now known as Sensory Processing Disorder (SPD), is not a new problem. It is a new definition of an old problem.
SPD can cause a bewildering variety of symptoms. When their central nervous systems are ineffective in processing sensory information, children have a hard time functioning in daily life. They may look fine and have superior intelligence, but may be awkward and clumsy, fearful and withdrawn, or hostile and aggressive. SPD can affect not only how they move and learn, but also how they behave, how they play and make friends, and especially how they feel about themselves.
- Carol Stock Kranowitz, M.A.
Did I know he had high functioning autism yet? No way!! Did I know he was different? Yes! Parents, here is where I will tell you to go with your gut. If you are thinking something is a little "off" don't ignore it. Don't panic either!! Embrace it, learn about it, learn how to see it as a gift. Yes, I will get to the 'valley's", and I do have a brighter view right now because I am sharing hope!
The train is still running in our house! Sometimes, we still have to tell Jordan to slow down and pull his engine into the wheelhouse. He will stop, take a breath, sometimes cock his head to one side and clench if he is really steamed, (LOL), but he understands and gets that train quieted. Sometimes, he even just rolls his eyes and parks it! And we still have that Rubbermaid tote full of Thomas and friends stored away for future generations. I treasure those trains and what they taught our family about ourselves, our journey, and my son.
Till the next station....
Kim
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