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:

res·pite  

/ˈrespət/

Noun A short period of rest or relief from something difficult or unpleasant. A short delay permitted before an unpleasant obligation is met or a punishment is carried out. Now I know that you may think me mean for saying this about my own son. But some days it was so hard just to get through the day, much less an hour. A period of rest of relief from something unpleasant. Yes, having to constantly explain over and over why you cannot take apart the electronics in the house, why homework is important-even if you know all the answers, why you are only responsible for your own behavior, why putting holes in the walls because you are mad is not okay....On and on. This is so emotionally wearing on families. So much energy is taken away from everything and everyone else, and unless you have lived in my home or another families struggling with "difficult" or unpleasant issues you will not understand. I have two other kids. They are "nuerotypical". They challenge me, they amaze me, they can be unpleasant too! But there is no comparing them to their brother and his challenges.  A great article I came upon in support of respite care is:  Respite Care for Children with SED and Their Families: A way to Enrich Family Life  www.pathwaysrtc.dex.edu/pdf/fpF0106.pdf

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

Jordan and I at the Capital in Helena.....Mental Health Day....

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.

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

In the beginning....questions & more questions

Birth, the ultimate adventure....what is anticipated for months, sometimes years, finally begins the arduous process of bringing  a child into this world. The glowing moms out there, who show up after beaming with pregnancy joy, now show up with a perfect bouncing baby boy. No stretch marks, or wounds to mark their journey-how boring was that! Not me, I was not beaming, unless you count the sweat from my power walks with my aunt and her friends, who, all in their fifties, are trying to make it around the world before they die. I thought birth would be this beautiful thing for me....and it was- just in a totally different way that I wouldn't understand for years to come.

Jordan Brooks Monroe came into this world February 3rd 1996. Just 3 days after Super Bowl XXX when the Dallas Cowboys lost in the 4th quarter to the Pittsburgh Steelers. (much to my husbands loud disappointment)  Otherwise his name would have been Jordan Dallas Brooks Monroe. Todd and I had a deal if the Cowboys won, then Jordan's name would have included "Dallas"! It was not meant to be!

Jordan was our 2nd born, and we were hoping for a boy this time. We already had a beautiful little girl, Mandi, who was born in 1993, in Ketchikan, Alaska. She was 2 1/2 and just waiting for her brother or sister to come out and play. The day I went into labor, I was rocking in a chair in the living room when Todd came home from work. I had been uncomfortable, but that was nothing new. Apparently though, unknown to me, I had a furrowed brow and was kinda pale when Todd came in. He too took one look at me, and said "Why are you not going to the hospital"? (He was working in labor and delivery as a CNA as he worked his way through school) I remember thinking... "is this all there is to labor?"  Mandi, you see, turned breach on her due date,she was like a starfish in utero, and refused to move. So 28 days past due, I had a C-section, it was painless, and a pretty easy recovery! So as I sat there uncomfortable rocking, I thought "okay, I can do this!". We were on our way!

No one had really told me labor could start and stop. Or that one could develop toxemia in hours, and be bloated, sick, and hooked up to pitocin, and wanting to throw up non-stop. Augmentation of labor...this is what they call it when they try to start-up your labor again with this lovely drug. What you don't know is it can also cause blood not to flow well to the baby, intense contractions when you are not ready, and if the cord is around the baby's neck as it was in Jordan's case, three times, it is not a pretty picture. Three days later, and only one code blue for mom and baby, (due to an allergic reaction to the Fentynol) and dad passing out on the bed, Jordan came into this world. He was past blue....and his APGAR score was really really low. I was as worried as I could be in my wiped out sick state. I knew Todd, having recovered from his "nap", was with our baby and I felt better. But seeing the worried look on his face as he looked over at me and followed the pediatrician out the door, I was scared. All I could do was lay there and pray.

It was quite some time before they brought my sweet boy back in for those newborn pictures, then took him away again. I didn't know they were giving him lots of oxygen, testing him, and keeping his little jaundice body (yellow now, not blue) under the heat lamps. Todd stayed with Jordan the whole time.

My mom and grandma had been with me for days and were so exhausted they soon went home. I could not sleep with the blood pressure cuff choking my arm, and the poking around the nurses were doing to keep an IV line open, but I was scared too for my sweet boy. Jordan went into an incubator, and Todd stayed with him. Two days later I was wide awake and feeling so much more like myself. I remember the nurse bringing me Jordan to hold, watching him closely, and us cuddling and watching Gone With the Wind. No one came to visit us. What I didn't know was it was traumatic to watch and our families were in a deep sleep after watching us fight for our lives for days. I called my mom and asked her quite perkily "Hey, where are you?', she told me what had happened from her point of view and they would come in tomorrow to visit after they all recovered. Looking back that day with Jordan watching the old classic, with a nurse next to us, and the incubator next to my bed, it was one of the quietest ones I would have for years to come.

As I begin this blog....you may wonder why did you go so far back? So many people are faced with the diagnosis of Aspergers, or Autism Spectrum Disorder. How did it all begin? What happened? Was there a significant event? Do you think vaccines caused it? Honestly, I am not sure I will ever know, but what I do know is that like Jordan says "I can consider this a gift or a problem, I chose to see it as a gift." Over the next 17 years there were days, no hours, I thought a lot of things like;

• Are we going to make it?
• Will he be living with me forever?
• Will he make it to double digits?
• Will he ever have friends?
• Will I ever have friends? You know the ones that don't look at me in horror or shock, but walk along side of us on this journey?
• Is he going to hurt himself someday>or others?
• Are we going to make it?

Now, I look back, and I talk to others about the early years, the middle school years (that felt like a century) and smile. All this to arrive at this place. A wonderful place where that little baby has grown into an amazing young man. Jordan is full of humor, sharp wit, and brains! He is so empathetic and caring, and stands up for what he believes in. God, his family, and others who are totally different. For all you neuro-typical peeps out there, prepare to think outside the box! He has a "future and a hope' that I didn't know could even exist in some of my darkest times.

I will share about IEP's, 504's, OHI's, pediatricians, friends, family, team sports, band, and so many other fun subjects! Let me know what you want to hear about!!

I have been asked over and over, "Did you write that down?" And I smile as I think, " No.....I am just living through it people!" Now I am going to try! I hope it blesses you as we are blessed in our family-holes in the wall and all!! (just laugh-its ok)

Kim