A opportunity to teach!

I enjoy my role as an early childhood educator. I have spent a lot of time educating myself and attending as many trainings as I can to stay up to date on what I need to know. When I am skilled enough I enjoy teaching and sharing with others my knowledge. I want others to have the same info as myself so they can in turn help those around them. Its how we as educators operate. 

In January of this year I went to my fellow ASD moms, the ones I knew were wanting to spread more awareness, educate and share their knowledge. After some talking I said I wanted to put together a group a special support group to help other families, to help others and to create awareness. We created a page shared our stories, tips, therapies, helpful info and other news stories relating to topics we had discussed. I have been so proud and excited to be apart of this. Every time we came across another family we would guide them to our page so they could meet other local families in the same boat. Since most of us are military affiliated this has been a big thing. 

About six weeks ago a lady was on our FB page and emailed us about speaking at her church preschool. I wanted to write back at first and respond that we couldn't do that, that we are not qualified to help these preschool teachers. As I was typing it out I was thinking to myself " Dummy! Who better than us to talk to these teachers and help them better understand!" I wrote back that I would like the opportunity and asked what would she like to have discussed. I began mapping out and asking the other parents if they wanted to help. Unfortunately due to scheduling issues etc no one but myself and another mom were able to help. I was still thrilled at the chance to really finally get to share my knowledge of everything I had learned thus far. 

This morning I ended up flying solo for this event due to last minute glitches with my friend Stephanie who was going to help me with this project. Luckily I was prepared to do this so I got up early organized my material and headed out to my destination. I was excited and nervous. This was my chance to make an impact with these teachers and really tell them all I knew and all I could do to help them! This was my chance to make the difference to be the difference. Now to make sure I could do this for the next two hours and I would be good to go!

I stoop up briefly shared about the spectrum connection and how we came about, I also mentioned about being with Reach for a Difference and how we go out into the community and really do what we can to be the difference. I also shared about our journey and how this has been a huge learning experience but that hopefully the information I have brought them will help them see what exactly it is these teachers need to be doing. 

We covered so much stuff and unfortunately due to the lack of internet the videos I had set up were unable to be seen. However I did my best to tell about what we would have watched. I could tell that I was throwing out a ton of information to them and hopefully they were able to retain most of it. I talked about room arrangements, least restrictive environments, tantrums vs meltdowns, ECI, developmentally appropriate stages, warning signs, inclusion and difficult behaviors especially with children who are non verbal. They seemed shocked at the things I was throwing out there but I was getting some good feedback at the same time. 

Standing up there really made me feel powerful. I felt this overwhelming since of pride knowing I was sharing with these ladies my information my knowledge to help them better help the families they work with. It really was a rush! If I was asked again to speak I would do it in a heartbeat. Having that ability to share with others and teach them its a powerful and amazing thing. I only hope to get more opportunities like this in the future!

When is fun not fun anymore?

The last few days we have been excited about the event we were going to take H to. Mutton Bustin was supposed to be just a laid back, lets give it a shot, have a little fun. I still believe in my mind that out of the 13 riders there was about 9 of those who felt the same way. Each parent eager and excited to give their child an opportunity to try something different and fun. Most of the kids were boys two of them however were little girls. H was not the youngest either there was a 2 year old and he was about as thrilled to do this as H was. 
They packed us down in the small area each child given a hockey helmet and a giant zip up vest. I actually didn't think the vest would phase him as he wears a weighted vest, however he was not a huge fan. The helmet was not an issue until he just started becoming overwhelmed. 12 kids all standing around waiting their turn. You might ask what happened to child number 13 no my child didn't back out we wouldn't let him! the 13th child came down with a bag as big as he was, flashy blue metallic chaps and of course a freshly pressed fancy bright blue Wrangler button down shirt. The kid was 6 and apparently had sponsors. You could see it in the parents eyes their kids didn't stand a chance!  Did we tell our kids that? No we kept encouraging them and telling them how awesome they were going to do. 
After a long wait we were escorted out to the arena. I know for me it was a blur. I was standing back near another mom camera in hand waiting for my boy to exit the chute. His name was announced and over all the talking I could hear my boy screaming. At this point his boots had been kicked off and about 4 mean along with Chris and another man all around him. We both agreed no matter what he was doing this. Our friend Richard was standing there holding H by his sides. The chute opens and out he goes. I was blocked by so many I was unable to see a thing. I did see Richard however, with H in hand guiding him through the air. I guess his sheep took a giant leap out of the gate and rather than having H take a big fall he held him to prevent the fall. That is about what we had expected. 
Around that time one of the officials looked at me and said he did good, he was young and that next year he would probably last longer. I told him this might be a one time only deal, that our son was on the Autism spectrum and that this might be to much of an anxiety deal. I made mention though of how many kids on the spectrum actually come out here and participate in this though right?! He cocked his head to the side and said "Well your right not many if any kids on the spectrum come out here and do this." He went on to tell me he was on the Chair Committee for North Texas Autism Speaks! Really what are the odds? He was thrilled to see us and him doing this. 
Out of the 13 riders at least 2 didn't ride at all 8 held on but didn't make it but a foot or two outside the gate. The two year old had about as much fun as H did however he hit the ground right out and was very unhappy. The two boys we saw wearing chaps did well they made it a few feet outside the gate. The last rider was the 6 year old boy with the whole fancy get up. Suddenly this went from fun to heavy hitting competition. The parents exchanged glances we all knew what was about to happen. I felt bad for the parents of the older kids because they would realize right off what was about to happen. 
Of course being the good sports we adults are we cheered for the little boy. He rode down to the end of the arena and as he rode back he did something that bordered the line of talent and showboating unsportsmanlike conduct. That is about the time you could hear the older kids muttering the words show off and how they knew he would win. That boy sat up on the sheep and acted if he was riding a horse. He looked cocky and proud. His dad was cheering and the announcer was dropping subtle hints that he was done riding and could get off. 
The kids were told to await their prize but most of the parents begun to walk off they all knew their kid was not in the top 3. Though at that moment they mentioned a check to the first place winner. REALLY?! These kids are 7 and under! A CHECK?! What ever happened to a little friendly competition a trophy, a medal or in this case a belt buckle?? I know H does not grasp that concept like we do but I sure do know that most of those other kids there did. I could see their frustration and disappointment in their faces as they realize they never stood a chance and that this was not a friendly competition. 
There was one other family that seemed to be taking this very seriously also. Suddenly I felt on a the reality show where those crazy stage moms drag their daughters and sometimes their sons to these pageants doll them up and demand they win the big cash prize. Instead of being on Toddlers and Tiaras I was now on the show Toddlers and Rodeo Dad's! It was sad. 
I am all about some good healthy competition just like the next family. Heck my girls figure skated competitively for years at the recreational level and won trophies and medals.It was considered the professional level if you were paid for your performance. So are we out of our minds in being in utter disbelief when I saw the dad harassing one of the workers about the check his son earned? Am I out of my mind in thinking that maybe this is a first and a last for us? We want things to be fun for our son. We don't care about the place he gets but just the experience that he is getting from it. 
What happened to letting kids be kids and letting them have fun? Why does it have to be such an emphasis on winning and losing? I guess I might be the only one in this but I seriously am disturbed by what happened last night!

Are you sure he is able to do that??

Of course I am! He is Autistic not dying! I swear if I had a dollar for every time we heard "Are you sure he to do that?" I think I would be able to quit my job! As soon as H was diagnosed Chris and I went through a phase that we didn't leave the house as much, limited what we did and altered everything. Not only did we hate it I believe that H did also. We thought that laying low and doing what we could to prevent meltdowns, eloping and just overall embarrassing head turning scenarios was the way we needed to go. However I felt I was being a bit hypocritical as I was bound to spread more awareness of what my child was diagnosed with. 
After a long talk we realized we will never be able to get him to adjust to these things if we keep him sheltered and always fear the worst. He has proved us wrong a few times and I think that is what we really needed to see to know what we are doing is actually the right thing. Then again there are situations we have been in that usually don't phase him and its been a complete nightmare.
Once we discussed and agreed that we would do our best to treat him just like a typical child his age I think we really started seeing in our hearts we were right but then we started facing more of the comments and questionings of those around us. I was reading on one of my Facebook Autism support pages about a young girl trying to get her grandparents to understand why she is so open about her son's disorder and how her grandparents say that it is no ones business and that those things should not be discussed. Most people responded with harsh comments towards the grandparents others like myself reminded these younger folks that our elders grew up in a time where being different and disabled was not ok. You were often seen as less of a person and not capable of meshing with society. Some have come around others still need more educating and understanding about what we believe to be acceptable to society now. When I say that I mean everything. I mean we are all different and that is what makes us so great. What a boring world this would be if we all hid our uniqueness and all conformed to the same standards society wanted us to be seen as. 
Just this week our son did something a lot of people felt was crazy. We let him preform a therapeutic riding demo at the West Texas Fair. We got all sorts of comments and questionings on it. My answer was the same. "How can we create awareness, educate and show others what these kids are capable of if we always keep them hidden and out of the sight of the general public?" Honestly though how would anyone really understand what we are doing for our son if I never showed him off? Is it a video that would be sufficient? A photograph or even a story? NO! First hand visual knowledge is the best and why not we are proud of H and I know he is proud of himself also. 
So now we have taken it a step further. Chris has been begging for me to let him to be a rodeo clown for Halloween  Ever since we took H to the rodeo last year he was wanting him to be something rodeo related and with his daredevil antics how fitting would this be! This whole talk was on the back burner till recently. At the parade Chris brought this up to our friend Richard and told him to get H signed up for Mutton Bustin. Yes my son will be riding on a sheep fully padded and protected. In fact I think its awesome we are doing something not therapy related and not worrying about it at all!
We want to expose H to all the things in this world we think he can do. If we limit him we might be missing something that could really have been his time to shine. We don't want everything modified for him but if it is required of course we want that for him. We want to see him succeed and do well, to find his nitch in society. If we always hold him back and keep him sheltered for fear of the what might happens, then we are really doing a disservice to not him but ourselves. 
So yes when you read/hear about us taking H somewhere, or trying something new with him just know we want to try and have as normal life as possible and we feel its best to do that by not setting limits before we see his true capabilities but using each situation as a gauge to know exactly what he is capable of and what works and what doesn't. Very much the same ways you would do this with your typical child. 
I do know I have friends who just can't do these things and I understand I just hope that one day they get to experience the things the way we do in some form or another. This journey is very unnerving and emotional so it is very important to stick together with other families on this same journey as us. Its always nice to see someone having your back and turning to. 
To those unfamiliar with what we face just know we want our kids to be just like yours. Treated the same, loved and accepted the same and the ability to do things yours do. So yes I am pretty sure he is able to do that!

It's Not Fair!

I rarely have those "whoa is me" pitty moments but for some reason today I did. Let me start however by saying that H had a wonderful first day of school and that it was everything we had hoped for. He enjoyed the smaller ratios, really enjoyed his teacher and even went on the potty!! Granted he missed and peed on his pants it was still counted as him going on the potty so we will take it!
So why do I think I deserve a small pitty party today then? My birthday boy started Pre-K today and it was only because he is considered disabled. I should be thrilled he is getting top notch care and education with PPCD but there is still a part of me that is sad that he is only getting this due to his, well disability. I need to put that aside and focus on the needs of my child and know that this is not a bad thing but that this is what he needs and he deserves, what we have fought to hard to get for him.
When I saw my sweet boys face walking down the hall I knew that he had a great day and was adapting to his new environment. I could see the exhaustion in his face but I saw the pride he had when he got off the bus. My co worker told me as she retrieved him from the bus he was very excited. I later read a note from his teacher that went into great detail on his day. This was reassuring and she was glad to have him in her class.
Tonight was my oldest son's open house at his middle school. Sean is in 8th grade and we are really focused on getting him prepared for high school. The original plan was to keep H at home with dad so that he could relax and not have to endure the insanity of the outing. However that plan quickly changed when Chris was needed to help out at TLC. I was left with two choices. Take this birthday boy to his big brother's meet the teacher or stay home and have a quiet evening celebrating our big 3 year olds day. I want Sean to know I take great interest in his education and want to see him succeed so of course we opted to go to his open house.
In order to make this evening happen in my mind I rushed home from the stables to grab H's iPad. I figured while I am talking to teacher's he can sit on the floor and go to town. I had this perfect plan all mapped out and was only kidding myself that it was fool proof. After all when is a child on the spectrum EVER predictable?! I think in hindsight this was his way for getting back at me for now jacking with two birthdays of his.
We showed up with about 15 minutes left of the PTA meeting. I really wanted to get info on this so that I might consider getting involved and also know what is going on with the school. Aside from sitting in the way back of the cafeteria it was almost done so I missed most the info and I could hardly hear. I sat with a friend of ours who is almost like an uncle to H. I knew if he started struggling he would understand. However what I was not prepared for was H to start his uncontrollable laughter that echoed and boomed through the cafeteria. Uncle Seth was not much help in fact it was all he could do to refrain from laughing uncontrollably himself! I stepped out a few times till he stopped, would return hand him his iPad and breathe, only to have him start up AGAIN! I would like to assume the PTA meeting ended early due to the fact that there was no more business to discuss and not due to the fact my child was so loud that more attention was on him than the PTA president.
We made a  bee line to Sean's first period Science class. We still had about 8 minutes before the meeting of the teachers actually began but thankfully his science teacher saw my sense of urgency to get this done so she gave us the skinny and we bolted. We made it to the next classroom, this one was actually his 3rd period class however for the sake of back tracking we just went to it next.  This is about the time it went down hill. I am thankful to a friend of ours who was in the room who can fill me in on what I missed since this was the class that Sean wants to drop and I want to know what this class entailed before letting him drop. I got as far as it being a computer class and it happened. I wanted to suddenly melt away into the floor and just vanish from all the eyes that landed upon me and H.
I generally do not become phased by the quirks of H. In fact I have learned to embrace them. However I do recall what it was like to be in that awkward teenage years and how easily embarrassed they can become. I was trying to make this as enjoyable as possible without drawing attention to H and making this about Sean. I quickly grabbed H stepped out in the hall and fought back tears. I was caught off guard by those tears and did what I could to quickly stop them. No more attention needed to be drawn to us. He was to far gone to even use a brush or chew tub. I managed to get his weighted compression vest on but that was minimal help at best. Saved by the bell! It was time to take Sean to his next class. I avoided eye contact with everyone grabbed our stuff and bolted to the hall.
We headed over to the gym where I thought we could be safe. Sean and I agree we were safe for about 10 seconds. H sat up on the bleachers and when he realized there was a echo in the gym he proceeded to growl, shriek and laugh as loud as he could to hear the sound. I don't know about you guys but my gym teachers where always pretty intimidating and these guys were no different. I I was hoping that the next 4 minutes and 50 seconds would just hurry up so we could leave. I am sure the other parents around us felt the same.
We got to the next room and realized he was done. Between trying to turn on all the computers, take down a desk, strip and hide under a table it was all over. Oh did I mention the teacher never once acknowledged us continued talking to her co workers and just let us sit there. Sean was even embarrassed by this teacher and told me he was sorry we just had to sit through that. I will email her I guess.
We got to the car and I let out a sigh of relief. It was over this hell was over. Then it hit me. Today is H's birthday and I just dragged him around for over an hour through a middle school with tons of people, lots of noise and no familiarity to it at all. I realized this is the second birthday in a row I have essentially screwed him on. I felt crappy. This is not fair! It's not fair to us and it is certainly not fair to him!
Last years birthday was spent in a developmental pedi's office in Lubbock being told our child had Fragile X and he needed genetic testing and nothing much more was said to us. We made him endure a 2 hour car ride, a 20 min doctors apt that was a joke and then 3 big males holding him down to draw blood. Gosh I guess if this was me I would retaliate and let it be known that I don't enjoy spending my birthday like this at all!
When we put ourselves in new situations with H we realize how unfair it is for us. These things require pep talks and social stories, every trick known in the book and tag teaming. I did none of that tonight and that was unfair to H. This is not resentment towards H it is my frustration of this Spectrum Disorder that now consumed our life.  However if you were to have sat back and asked Sean if he cared about his brother's behavior tonight he said he didn't care. He knows this is who he is and accepts him and if his peers can't its their loss. So while this all seems so unfair its just how our life is. To be comfortable and accepting of this is now up to us regardless of our situations we are in.

They don't belong here...

I used to be one of those people who would encounter a difficult child and say " Oh they don't belong here!" They would be hard to handle, difficult children that made me question my ability to work with children. I had only been working with children a short time and had not even begun my pursuit of a CDA (Child Development Associates) or Early Childhood Degree. I didn't know much about Sensory Processing Disorder, auditory and speech impairments or even what challenging behaviors were. To me ti was a parent not doing their job and spoiling their child. Don't get me wrong I am well aware there are plenty of those running around so I am not naive to that!
My first three years I encountered both types of children yet I was green to the ways of handling them. I admit I didn't have the patients  I do now and I believe that has come with time in the field. My first real encounter with children who had developmental delays were real eye openers. It was a frustrating time, but in the end taught me so much.  They had their strength's and their weaknesses just like their typical peers. They might have been harder to work with and require much more time and attention but in the end it really did teach me a lot.
In last few years my encounters have grown and each time I learn a bit more and become much more patient and understanding. It was while working with one of my most severely behaviorally challenged child that I really began to see that we do give up hope on those children much to easily. This little boy was roughly three and a half years old, bi lingual, not potty trained, from a very unstable home, dad was incarcerated, step dad raised him while mom worked most of the time along with taking care of his other siblings. The deck was becoming stacked against this kid. Throw in some anger issues and speech delays some might say it was no wonder he was constantly given up on and moved from one care givers room to another.
Every teacher who, up until this point, had him had given up on him, treated him like an outcast and that he simply didn't belong here. He was very smart and very lovable when he was given the chance but he was in tune to those who casted him aside and so in return gave them nothing. If I called out of work they wold send him home because he would misbehave or the teachers simply didn't want to deal with him. I personally enjoyed having him in my class and learned quiet a bit from him. Children are not one size fits all they are unique and special. You have to treat them and work with them accordingly.
As time has gone on it has shown me that I really had a lot to learn when it comes to working with children. I found myself very occupied suddenly with school and training. I needed to be arming myself with more than I had been. Not long after that I found myself with a child who has special needs and my understanding and knowledge grew ten fold in that time. It really has heightened my sensitivity to how these children are treated.
It seems when you are more focused on a certain thing you become more aware of it in your surroundings. In this case I am focused on special needs and behavior. I guess the norm now a days is to kick them to the curb or blot them off when they don't fit our cookie cutter mold of the perfect child. How will they be what we want them to be if we constantly cast them off to the side and not give them the chance? How can we help them learn and grow when we shut them out? How can we get them to respect us when we  ourselves don't respect them? The answer is simple, we won't and we can't until we open ourselves up and really take the time to address these situations. If we are constantly passing the buck eventually we are going to come up broke, empty handed and guilty of not doing what we set out to do when we became an educator. We have not only failed the child but we have in turn failed ourselves also.
So I ask you to really think about the next time you say a child doesn't belong here, where do they belong? Why don't they belong? How can you fix it and get them to somehow belong?

Dear ECI

With only two weeks left with our ECI team I started thinking of what their dedication and services have done for not only our H but for our family.

Dear Staci, Becky, Starla and the rest of the team who has spent time helping us with H,
Here we are just a few weeks away from our last weeks with you, two to be exact. This is just almost to hard to write because part of me in still in denial our services with you will be ending soon. 18 months ago we started our journey with you. I was unsure of what would even come of our initial consultation, if anyone would even see the need for it or if I was just a paranoid mom who forgot what it was like to raise a toddler boy.
In May of 2012 we began this journey. I have saved every print off that I was given from the first 6 months prior to our first appointment to gain a actual diagnosis. I often look at those on days where I think things are not going well and look and see just how far we have come. Sometimes it's those actual notes that completely keep me motivated in doing what I do for H. When I see how bad it was and how much work was needing to be done and then I know everything we have gone through was for a purpose. I would not change any of it.
The day we headed out for our first diagnosis I just remember the support Staci gave and told me to be strong. If it didn't go well we could always ask for a second opinion. At the end of the day I called her in tears at the possible diagnosis and I remember Staci saying we will just do what we have always done he is still the same child no matter what the diagnosis. We also ended up going with that second opinion. I am so glad to this day we did that.
As we have moved on I feel our team has bonded and grown together. We have laughed together, cried together, and certainly felt beyond frustrated together. My team has become like family to us. I count on these visits and consults like I count on visits with my own family. I know that H has grown to count on his weekly Tuesday visits with Ms. Staci. His eyes light up at the mention of her name. Maybe we can work out some visits or something. Hint, hint Ms. Staci!
So now we are two weeks away from his 3rd birthday. On the 29th of this month he will begin school and his transition to preschool. Staci will have one last visit with him just a few days prior to him being 3. She will have seen him grow from a young toddler to a preschooler. She was a major part of this transformation and the progress he has made. We are forever grateful.
I have no idea if there are enough gifts and thank yous in this world to let the team that worked with us know how much we appreciate what they have done for us. The doors they have opened up. The changes that were made. I just hope our team realizes just how much they mean to us and that we could not have done this without them. The are my miracle workers and I just hope that other families realize just how valuable these ladies are and how much they love doing what they do. They truly want to help families and see these children grow and succeed in life.
Thank you so much again. We will miss you so much.
The Thomas family!

Conquering fears

I think the tears are starting to well up even before I start this entry. Today was so special yet so simple. Words can't really explain so I am going to post a TON of pictures. Some of the main things that happened today are: 1) We took our ASD child to a water park, it was small but a place full of water 2) Our ASD child had the most fun I have seen him had in a long time 3) My 8 year old who is fearful of just about anything conquered her own big fears those are slides and diving boards 4) we avoided a trip to the ER ( the past two summers on any fun family outing I manage to get stung by a bee without my epi pen and land in the hospital) We had a few close calls but made it out safe!

This family has been through hell this summer and even though things have been tough Chris and I realized we had to do something. I can't have these kids memories filled with sadness. So last night Chris said we should go for the water park and just do it! We figured with the cheap entry fee, and the ability to bring our own food we could honestly pull this off. If you have ever been to Hurricane Harbor or big water parkers you know those fees quickly rise all in all we spent well less than that and I think had more fun than a big overcrowded water park. 

That bright pink spec on the diving board is Ella jumping!

He enjoyed bouncing up and down in the water!

After lots of attempts he finally decided to go down the waterslide on his own just like his big sisters. 

Ella was so scared to do this but the helpful lifeguard told her if she sat up it would make it slower. 

So proud of doing the slide by himself. I think he did this slide another 100 times before we left

He got brave and decided face first was more fun because he could open his mouth and proceed to drink the water as he got to the end of the slide!

This was a fun rope course they had and Ella did it without falling into the water. That kid has incredible upper body strenth

That spec on the board is Hannah doing her big huge cannon ball!

So tired he couldn't even put his water down before he crashed out!

Hannah fell asleep right after this picture and has been out like a light since we got home

Somehow she managed to stay awake the whole ride and is still up as I write this!


So that was our three hour day at the Camp Bowie Family Aquatic Center.  I really had tears of joy as I watched my children just be kids today. They encouraged one another and just had fun being together. Its things like this that make all those struggles worth it.
The manager of the water park was amazing we told her H's situation and she came and checked on us throughout our stay. I had tears in my eyes when I told her thank you for making this day so awesome for us. She made the 1hr and 20 min drive so worth it. She was so sweet and was urging us to come back again and stay longer. Baby steps, baby steps.
So I guess we did get a vacation this summer. Autism took a vacation today and we were a typical family. It was so different and while I enjoyed it I wouldn't change H at all. It was just nice to not have to worry about big crowds and getting lost. The staff was aware of his eloping and you could tell when he was around they took notice. They might have been teenagers but I think some of them took it seriously.
Its 4 hours after we got home and I am still smiling! Is it really Monday tomorrow?