Tuesday, November 19, 2013

When is it just to much?

I am always thankful for those who follow our story and support our mission to create awareness. Our goal from the get go was never to get pitty or to make others feel sorry for the cards we were dealt . In fact we hope to inspire and help other families above all. However sometimes our mission gets marred when others take advantage of support blogs/pages. It is sad but there are those out there that unprofessionally diagnose their child, create symptoms for diagnosis's that aren't really there and exaggerate and elaborate on details to get that huge "Oh you poor thing." factor. Those folks tend to put the rest of us in a negative light. 
I never in my wildest dreams thought this journey of my last born would turn the way it has. While our start was a bit rough and a bit scary, again I really thought that would be the end of it. Minus our breathing issues. Autism and all that has come with it was the furthest from my mind. However I can recall one instance sitting in my class in my second semester of college when the thought of Autism came into my mind. A friend of mine, co worker, babysitter, had been talking to me about H and his struggles with speech etc. She had asked about Autism. I said if things didn't improve we would take that route but until then it was just delays due to premature. That was in the winter of 2012. Later that spring is when our lives started to change. Evaluations and testings in its early stages would start to reveal the delays that I was hoping were just in my head would not actually be factual. 
Even with all that we started finding out, our mission was always clear in our head; AWARENESS, AWARENESS, AWARENESS!!! If H actually had Fragile X we wanted to be as informed about it to learn more and start spreading the word on creating awareness. However after two different genetic testings, despite his physical and developmental markers for the disorder, H did not have Fragile X. We still remain apart of the support page as we made some great friends and learned a whole lot about it all. Then we heard the words Autism and Sensory Processing. We went into it with caution and research, we had already been through the stress of one disorder so until we knew without a doubt we kept cautious of what we were dealing with.
Once we we knew what H was dealing with of course our mission was clear. Spread the word, raise awareness and do anything and everything we could to help him. Let me make this clear we didn't/don't want pitty. We want to help him and our other friends we have met along the way be the most successful they can be. I won't embellish details, put things in that aren't there, be deceitful to gain services we wouldn't otherwise qualify for. Sadly we have come across these types of people and it is sad because essentially they are taking away from the other families that aren't able to because the time and therapists are being taken up by those who really don't need it. 
I know as a parent we want to do what ever we can to get our child all the need to succeed however when is enough, enough? When is to much, to much? When is it considered overboard? I have encountered families that have actually lied to get more for their children to create things that aren't really happening to get more out of therapies and out of people. Some would ask "What type of person wants something to be wrong with their child?" " What could one possibly get out all this needy deceitful antics?" At first I am sure they get what they want and then as time goes on hopefully those around them start to see the truth and realize some people are in this for the attention apparently there is some sort of glamour in the disability world. 
I ask those who follow our story to know that what I post is 100% accurate and true. I share the good, the bad, the ugly and of course the unexpected. I try to give a good balance so that the real picture is shown. Autism is not the end of the world, in fact it is the start of a new one for us. Autism has opened our eyes to so many things and in a way we are grateful to this. Its taught us to slow down more and appreciate things we wouldn't have in the past. We have learned to see things in a whole new light.
Autism isn't always this downer and horrible things. There are some wonderful moments we have encountered. I encourage those who follow pages like mine to be leary of those who constantly post the downs, the whoa is me posts, the things that just seem off. There are just some people out there who want some form of attention and its not about their child its about them. Of course most of those who follow support pages like mine aren't familiar about the diagnosis. Utilize that as a time to learn on your own what it is to form more educated thoughts and opinions. Ask questions to the people you follow. You can learn a lot about the people you follow by asking the straight forward direct questions without coming off confrontational and rude. Do this especially if you plan to give monetary donations and such. I would hate to see that someone got scammed. In the past when we have been provided monetary donations we sent proof of purchase to those who donated so they could see it was put to good use then when we were able to show pictures of H utilizing what ever it is we might have purchased with donations. 
I know this is not the typical post I share but after some recent situations and information I have been seeing I feel this is important especially with that holiday season upon us and people are feeling more inclined to give and reach out. Speak up of things seem off. I know that there is a person I have encountered on this journey that has pushed the limits and made others scratch their heads in wonderment. It has really taught me how to read people and situations more so that I can make a more informed decision on who to support and follow ourselves on this journey.  

Friday, November 8, 2013

Don't be sorry....

"I am so sorry", " I don't know how you can do it."," You must be a very strong person.", "Do you ever just wish it was different?"  As a special need parent these are some of the most common things we hear. They are usually from well meaning individuals, family, friends and strangers alike. While I realize they probably mean no harm in their statements it just becomes unnecessary and awkward. 

We aren't sorry for the child we were given. We do it because we are the parents, it is our job our duty our RESPONSIBILITY. We do this the same way would we would raise a typical developing child. I don't feel I am any stronger than the next parent to do what I do. I think or I would like to think that any other parent in our place would do it, I know however in reality this is not the case but I always believe that this is how it should be. Never, ever ever do I wish this was different for us. This is how it was suppose to be so why would I want to change it. There are days that it gets to me but then again I think regardless of what my child is diagnosed with I am sure I would wish the that things were different. However this is how my child is, this is who are family is, this is what our lives are now. Nope no need to change it. 

My mom called tonight. We speak once a month or every six weeks. Gasp and tell me what a bad daughter I am but I have my reasons and do not need a lecture on how I am a cruel daughter for my estranged relationship with her. Anyways she had just had a friend over with her 6 year old Autistic son. Gathering from the tone of voice and the call he has to be much more severe than my child. She hasn't seen H since he was a newborn so she really has nothing to base anything off of unless my family has mentioned his behaviors and diagnosis to her. She proceeds to say how sorry she is over and over. I reassure her I am fine and that really its going to be ok. At this point I feel awkward because she honestly has no idea what we endure day in and day out.

After she tells me about the visit I have to start the explanation that he is a lower functioning Autistic. I only assume this from the behaviors and the lack of potty training etc. My mom was baffled that I knew so much about this child I had not met. Hmmm lets see everything she described, my own personal knowledge and now training in I think I have it covered. She seemed so amazed by it. She still actually has no idea what our daily life entails she just thinks she does because of a visit from her friend today.

She asked all sorts of typical questions that we get from people who don't know us well or have no idea the variations of this spectrum disorder. My mom is old school and not hardly capable of using a computer let a long a smart phone so her knowledge base on Autism is very outdated and very Rainman esque. I explained his quirks as you will and she seems to be grasping more that my child is nothing like the 6 yr old who was at her home today. 

Once I finally got my mom to actually listen to what was being said she started to grasp what we deal with on a daily basis. I told her you meet one Autistic child you have met ONE Autistic child. I said while yes these two share similar quirks and such that they are both on opposite ends of the spectrum. Regardless it is a social disability that effects social skills, cognitive and some motor skills. Again since she has not seen H since he was a newborn really has no idea what he is like. She kept wanting to talk on the phone with him and I had to explain this was not going to happen as he has no face to put with the person and will not answer her questions unless they are his desired topic, she finally understood this. 

After she and I ended our conversation, H was running around outside of our destination climbing and getting very excited, I really started thinking more about her call. I know she was prompted to call because of her encounter today. I can only assume she felt genuine concern of us because of what her friend endures on a daily basis. I know she wants for this relationship with him and myself. I however am not sure I am ready for it. I don't want the relationship out of pitty and feeling sorry for us. We get along just fine and I don't need her to give the tone of the "oh woe is me" to all of it. We are not dwelling on this at all. We embrace it and claim it as our normal life. I never want H to think we should dwell on this or that its his fault at all.

So please if you ever encounter a family who has a child with a disability don't pitty them, feel sorry for them or make them think their life should be different. Help them embrace it, encourage and support them. This was the hand they were dealt and they are making the absolute most of it so you should also. 

Tuesday, November 5, 2013

It could happen to you...

Since the start of the year it has been filled with up's and down's. More so than any other year I can ever recall. This says a lot because I have gone through a lot in my adult years but this one sure is one for the records. While it has not been the picture of perfection it has given us a lot to be thankful for and a lot to learn from. 
At the start of the summer life had become tough, so tough we had no idea where we were going to end up and what was going to happen. Good people, LOTS of good people were looking out for us and helped pull us through that very tough time. Thankfully those tough times have been put behind us and we move forward once again. Those tough times however brought to light things we needed to focus on and helped us realize what we need to do make sure that we don't encounter this again. 
With that said this year has been full of pleasant surprises and lots of good news. In March I was nominated for employee of the quarter not only for my center but for my squadron, group and the overall base. I ended up receiving that in each category. I have been told this puts me in the running for employee of the year for my category which would be even more awesome. In April we were granted money to obtain several things for H. We got his riding covered along with much needed therapy items. H also got into the PPCD program at Head Start which we were very thrilled about because we knew he needed extra help and this was exactly what we had hoped he would get. Just recently I took on a lead preschool teaching role and I have been so excited about the opportunities it has given me.
I think however the icing on the cake for all of this was the phone call I received this morning. I generally put my phone on airplane mode when I am at work to preserve the battery. As I flipped my phone back into working mode I noticed a VM. I assumed it was Sean's school notifying me of the schedule change etc. However it was a lady from KTXS tv station here in Abilene. I at first thought this was in reference with stuff I am doing with TLC so I just sort of backed out of my parking spot and proceeded to get my lunch. However as I continued to list I realized this was not exactly about TLC this was about ME! 
It turns out someone, possibly my husband, nominated me for WTU Electric volunteer of the year award. I am now one of the five finalists. They talked about my work with TLC, Reach and my own group The Spectrum Connection. How I work full time, go to school and have my own special needs child and give my time to help those in the community all at the same time. I started crying and shaking. I had never before ever been nominated or considered for something like this so to be a finalist to me is HUGE! 
I spoke to KTXS this evening and we discussed a tentative plan for next week. They want to come out to TLC see what we do, meet my family and see what it is I do. So I will know by Thursday what exactly will be going on. This segment will air a few times till the winner is announced. They will have all of us on sharing our story. I have no idea if this is a voting process or what but still I just feel honored to be top 5 right now. 
So what do I get if I win you might ask? I personally get nothing. The Legacy Complex will get a very much needed $5,000 award. That to me is enough of a prize so I am perfectly ok with that! TLC has done so much for our community I am excited to know that they very well could be given this award me. 
So now that I am starting to come down from this amazing high I need to start focusing and thinking about what I am going to do next. I want this to be the most amazing interview that captures everything that I think matters to myself and my family. I want to make sure our special needs community is given the recognition it needs. This is something I don't think in a million years I could have ever dreamed could happen so for now I am just going to relish in this moment!

Tuesday, October 29, 2013

Doctors VS Schools

September 14th was my last update. So needless to say life has happened since then that has kept me away from my blog sadly. However not all of that is for a bad reason. I have taken on a full time preschool position, H has been busy in activities along with Seanman and between all of us in school we just need to prioritize. 
Over the last few weeks I have been posting about the schools results on what they believe H will be labeled as disability wise. Hold on, you say, "wasn't he already diagnosed with PDD-NOS and SPD and APD?" Sure of course he was after two days of testing with other testing sprinkled in there by trained doctors and neuropsychologist. So basically I have taken their word as gospel at this point because well this is what they went to school for this is what they are certified to do. However the PPCD program feels they must do their own evaluations and testings on him to ensure the Autism diagnosis. I wonder if those who are deaf or whom are intellectually challenged have to go through this same series of testing. I mean seriously how many times must a child, a family endure this testing? 
When I posted on H's page late last week about meeting with the school to go over their test results most people who responded were baffled that he needed to be tested despite what doctors, trained professionals had already diagnosed him as. I was warned of this from ECI prior to going through our initial meeting and our ARD. I was worried because what if they happened to catch him on a good day and they say he is fine and that I am crazy? I still would stick to what the doctor had said and just continued to fight our fight for him. When he was accepted I was so relieved and thought most of this was behind us. 
Several families said that when their child entered the special education program all that was needed was the actual doctors diagnosis and all the results that were given. Makes sense right? I mean I know their job is to base our IEPs off of their lacking abilities and to get a clearer picture of the child's needs. However while I respect that as it is very needed to help my child succeed I feel that they are trying to over ride everything we have spent countless hours obtaining,  the mucho money that was spent and all the time we had to travel. Today for example a friend of mine here in Texas received a call from their child's school stating since their child had the best penmanship in the class and was so very smart their child was not Autistic. This was by far the most insane thing I had ever read! Granted my child does not have much in the way of penmanship he certainly is super smart. I am sure hoping in this instance it was a very unqualified teacher calling and not someone who is trained and qualified who made this remark to the parent. 
If you have seen one Autistic child then congrats you have seen ONE Autistic child. This is spectrum disorder. There are various levels of this disorder from severe, minimal to no self help skills or communication skills and lacking even the most basic in coordination to moderate/mild, more self  help or fully functional skills, communicating and fully coordinated. Does that take away at all from what the underlying disorder is? NO not at all these children all lack the same thing social skills and the basic ways to properly interact with others around them. That on top of other things is what this disorder is about. 
Last night we went to a friends house for a Halloween playdate  and to have dinner. My friend has a son who is a little older than H and he is on the more severe end of the spectrum. While he was more severe than H they both had similar quirks about them. Another little boy who was just a few months older than H came who was just diagnosed on the spectrum was more along the same lines of H as he was more verbal and same hyperactive but he was not as into climbing as H, and he had more meaningful speech, H had a lot of scripted speech last night or using phrases that he had heard us say and was using them. All three boys on the spectrum all three boys with various strengths and deficits.  Up until that last half hour we were there it was the quietest playdate I had been to in a while as they boys didn't interact much did their own thing or were engaged in the movie. 
I completely understand the school wants the full picture of what is going on with H. I mean who doesn't? However no matter what they come back saying it isn't going to change what we were told back in January. I am already a little leary of what will happen next week when we meet for our ARD meeting to discuss his results and his new IEP. I was told last week no OT was needed! He was in OT twice a week up until school started and that was only dropped because it was going to conflict with school.  I plan to address this as WE (our team) fully believe he needs OT at school. Especially when it comes to the oral part of it. He sensory seeks this way and we want to make sure that his needs are being met with his chew tube and or Z-vibe, even being able to use his vest during those times help. 
Before my naysayers jump in and tell me that I am being to hard on these educators I believe I am entitled to feel this way. I know what it means to be an educator. I am one. I do observations and assessments of young children all the time. However these are brief snapshots of their abilities and weaknesses. Does this mean I am qualified to tell a parent that their child is to disabled or just so far above the other children. I simply tell the parents of the red flag I see and encourage them if need be to get more help to ensure their child stays on track. I know that PPCD is for those with special needs so their qualifications are of course different, however sometimes I feel that they have become so immune to what we as parents have gone through with our child to reach the point we are at. They only see their aspect of it and forget that we are the ones that have endured this day in and day out and gone through the hell and back we have to get them all they need to help them do better. 
Earlier this month Reach went to the AISD school board with our proposal to get more Autism awareness/education in the classroom. I am hoping that when this is approved these educators can really see more of what us as activists and families go through to help all these amazing, brilliant children who are such an important part of our lives. I am truly holding out hope that this will be the push we need for them to start seeing that regardless of what their papers say these are who these children are and no matter what level of the spectrum they are at they still need their help to get to where they need to be and meet or surpass those goals set in place for them. 

Saturday, September 14, 2013

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!

Thursday, August 29, 2013

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.

Thursday, August 15, 2013

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?

Tuesday, August 13, 2013

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!

Sunday, July 21, 2013

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?

Saturday, July 20, 2013

Super Sunday Sync! My first time co hosting a blog hop!

Excited to be co hosting my first blog hop this weekend. I am apparently not as good at this whole blog thing as I thought because man this was crazy for me to figure out! Anyways I am Jamie the mother of 4 wife to 1. I lead a crazy life but love every minute of it. I enjoy burning both ends of the candle while raising our special needs toddler. Some how some way I manage to get it all done well almost all of it. If I don't invite ya into my house just know something that day had to give! Thanks for following me this weekend on the Super Sunday Sync! I hope I get to do this again soon!
Welcome to Super Sunday Sync #45!
Thank you to our wonderful Guest-Hosts this week:
Join the mailing list HERE and receive notifications about the #SSShop!
Rules for the "Super-est" hop ever:
1)  Link up a family-friendly post (or your homepage if it will always be decent, please not to another hop) that you think is SUPER!
2) Follow your hosts {Dawn and Kera} and our Guest-Hosts and via RSS and/or Bloglovin'.  We also appreciate (and return) any Facebook Likes, NetworkedBlog, and Twitter Followers.  Be sure to leave a comment telling us how you follow, we'll follow you back!
3)  Visit and follow the blog before you, and a few others {the more, the merrier}.  We're all looking to have more followers, that's why we're hopping, right?  Remember to leave a comment and we'll follow you back.
4)  Grab a button and put it somewhere people will see.
Super Sunday Sync
If you are interested in Guest-hosting the SSS, please 
Don't forget to Tweet!  
Don't forget to enter Dawn's Disaster July Sponsor Group Giveaway! a Rafflecopter giveaway

Saturday, July 13, 2013

Taking time to educate

I was asked tonight after a meeting I was at by a lady who had grown children what my son's disability was. She asked in a manner that I knew she knew what it was but instead of being rude and saying "So your kids is Autistic right?" She made it opened to segway her questions and wants for my opinion. I explained to her my son has PDD-NOS a form of Autism along with sensory disorders and auditory disorders. She smiled and nodded politely which left me feeling a tad bit uneasy. I have heard of these scenarios of how welling meaning people come to you and suddenly tell you if I do XYZ then my life will be better, If I just spank him he will snap out of it etc. I braced myself because 1) I had no idea what she was going to say 2) I was at my friends place and I wanted to remain as calm and professional as possible. 
I can be quick to jump to the defensive so I stood calmly and waited for her to go where she was heading with our conversation. My husband was near by and I am pretty sure he was sensing that this could get intense so he walked away with H to go see the horses. Chris doesn't quiet have the filter I do so it's best to let me handle sticky situations such as what I thought we might be encountering. 
Anyways she asked if I had decided to go all organic and gluten free style of eating. I am thinking "Oh lord here it comes my child's diet is about to be the cure for Autism!" I heard her out and when she said that she had heard it can help alter their behaviors etc I suddenly thinking "Ok I can totally work with this." I explained to her how his diet is for the most part limited due to him being picky however we eliminated food dyes and a lot of the processed foods. I buy organic for him when I can but that we are on a tight budget so I can't do the whole gluten friendly stuff quiet yet but hopefully one day I can. For now this is where we are and it seems to be helping us for the time being. 
I think she sort of sensed my tension so we threw in some side conversation and then she double backed and came at me again. This time I was more prepared. Or so I had thought. She asked me if they had a cure for Autism would I want to cure H? A year ago I would have jumped up and down screaming yes yes, oh please please please cure my child! However I have grown accustomed to this lifestyle, this is who Hunter is, He is just as good as any typical developing peer and will be somebody someday regardless of his disability.  
I turned and looked at her and calmly responded "No I don't want to cure my child" She didn't seem quiet prepared for my response. She opened her mouth looked at me and did a double take. When I saw the look on her face I told her "This is who Hunter is, Autism doesn't have Hunter, Hunter has Autism. This is how he was suppose to be. This is what sets him apart from his siblings and his peers. He was put here with a purpose and that as to take this disability and let it know who is boss." 
After a few minutes she still probably couldn't let it sink in that I didn't want to cure my son so she wanted to I guess come at this from another angle. I explained I had four children and that each one was special in their own way. Do I blame myself for anything they might have today? Nope not really. I mean I knew it was a possibility that one or all of my kids could end up with some form of learning disability and or ADD. Did that stop me, of course not. I wanted a family. I could tell she thinking that I was taking offense to her and she was telling me that I should never beat myself up over how any of my children turned out it wasn't my fault. I think clearly I had this lady so confused that she was trying to salvage what was going on. I wasn't irritated with her I was just so curious as to her line and logic of her thinking. She had older children whom she really didn't see often I assume they live with another relative as she stated it had been over a year since seeing them. So I guess she was just curious as to a special needs parent thinks when it comes to this. 
As we wrapped up our conversation she went in for the kill. However I think she was more curious because its such a common misconception and tossed around so often I can't blame her. She asked if I blamed all the immunizations that children are given. I told her out of my 4 fully vaccinated children this was the only child on the spectrum. She said she had read that giving tylonal to a child before shots had also been the case. Well I am not sure then if that is the case how we ended up where we are since I was the mom who always forgot and gave my kids the pain meds AFTER the shots. 
I wanted her to see that not all the research out there is accurate. That it is still very outdated in some respects. There is so much more coming from these big Autism organizations that are helping alleviate those misconceptions and educating the masses. I pointed her to a few good resources to help her better understand that there is so much more to this disability than a diet a child eats or a immunizations a child has. Yes there can be reactions to diet and vaccines but neither one is the direct result of Autism. 
I was proud to really spend time educating someone tonight. I really felt she listened to what I had to say and respected my thoughts and opinions on this matter. I hope I can spend time educating more around me who are not aware of what Autism and all that goes with it is. It is a great and empowering feeling. Something we all know I enjoy every now and then.

Making some noise, taking a stand

I often use my ADD to my advantage sometimes it works others not so much. I do pride myself on my initiative and what I set out to accomplish. I am hard on myself when I never reach those goals however. Earlier this year I really found myself and found myself often burning both ends of the candle. Full time student, teacher, parent, wife and volunteer. I want to do it all I want to leave my mark and leave it loud and clear. So far I think I have.
When I joined Reach for a Difference. (www.reachforadifference.org) I had no idea what to expect. I suddenly found a group of people who might actually appreciate and respect my ideas and thoughts. I suddenly found myself on the fast track to being an action board member. I had ideas and plans that made them excited to have me there. I looked forward to our monthly meetings. I had a few proposals that I am proud of. A city wide child find event to help local families pinpoint needs and services for their children, a dads group for the men to bond and talk about the ASD life and I provided a great guest speaker for one of our meetings. I felt accomplished. 
At the end of last year I was reading via email of a facility that did riding for those is special needs and disabilities. A friend of mine was doing this for her son so I wanted to check it out. I was never able to actually see anything since H wouldn't work with me so finally when our EFMP (Exceptional Family Members Program) hosted an event there I was all over it. That is when we knew riding would be for H. Chris and I got super involved as did Sean. I am now on the board there and helping promote the facility and all it has to offer. I have a lot of support from the folks out there in what I am doing so to know this helps motivate me even more. It might be a million degrees outside but taking my son up there for his sessions once a week is something I won't pass up. I say it builds character ha ha!
After meeting so many friends who had children on the spectrum I came up with an idea to present to them one evening and the Spectrum Connection came to be. It is a FB page set up to help local West Texas families connect, share, get information and set up play dates. It lulled out for a bit but this week I have decided to do my best to bring it back to life. Why? You will see as you read on. 
In April due to my acceleration with school, being on the deans list and now the presidents list, along with my interactions at work and in the community I was awarded Employee of the Quarter for the 7th Bomb Wing. It was a huge deal to me. It has set the bar a bit higher for me and made me set goals that I may not make right away but I hope to. Will I still be hard on myself if I don't reach these goals? Of course I will I know I can do it so I should not settle for anything less. 
Just recently we battled some issues which I have discussed enough so I won't bore with those details. That also had me put things on the back burner for a while. I was starting to feel down on myself and not happy that I have let things slip. I emailed our CEO with Reach and said we should set up a meeting because I need to get things rolling again. The next day I just happened to stumble across something on a page I belong to on FB and ideas started sparking left and right. With the loss of some crucial programs that help military families once/twice a month a lot of people were feeling the pressure escpecially those who have special needs children and are seeking respite care while their spouse is TDY, Deployed or on a remote tour. Even those who have their spouse home and just need that break and meet other parents. I thought about the support group I had for those who had children with ASD. We haven't utilized it as much as we should have and now is the time to strike while the iron is hot. 
I decided to take a deep breath and email our base commander and ask him why we couldn't offer some sort of play group/ respite care to these military families that so needed it. I posted on the spouse pages about what our group was and who would be interested in getting together. I knew there are so many families searching for a place they can go to meet others and just feel like no one is judging. 
As I posted I was shocked at some of these responses. Some were very encouraging a few left me shaking my head wondering why people can't just be happy. I was given grief when I was told that this was just opened to spectrum families since it was for our group etc. I encouraged other families to do the same. I was told I was discriminating. I am not sure how so since I wouldn't want to take my child to a playgroup with cancer patients, Downs or CP. Not that I don't think they are not good enough but because my child has none of those and it makes no sense. I want to be around other families who know what I am going through. I was starting to actually feel more powerful because the people who stood behind me really made it known and wanted to support me and help me. Fantastic!
I emailed the commander and said a special needs respite/ play group would be great but I would want other families to step up to help promote this but for now since Autism is a prevalent disability at this base it would be ideal to hone in on this and do what we can to get the ball rolling. I was ecstatic to see the response. I had those nay sayers telling me he will laugh at me and tell me with the state of our budget this would not happen. I was told that he would tell me to go off on my own and do this. However the response I got shocked many including myself!

Jamie -

Thank you for thinking about how to better serve our families at Dyess.  I applaud your initiative to volunteer to organize a playgroup/care type event for families with special needs children.

Your suggestion to use the Hangar Center is a good one, and there may be a couple other facilities that would work well, too.  I'll have my force support team research the options, and I'll get back to you early next week.

Again, thank you for your suggestion and willingness to help --


Glen VanHerck

Commander, 7th Bomb Wing

So this is now my motivation and my drive to do this. Several higher ups had this email sent to them, they are now looking into ways to make this possible. I am hopeful and encouraged to help these families. I am looking at talking with a few people on what it would actually take to launch this program and how soon it would be able to launch. 

To those who doubted me I am not going to let you get me down. I am strong and I am a fighter. I will do what I can do make a difference and to help others. I feel its what I need to do since so many have come forward to help us. Some times taking a stand and voicing your ideas is all it takes to make that small rippled that can make a very large effect. 

Sunday, July 7, 2013


in·de·pen·dence- the quality or state of being independent

free·dom  the quality or state of being free

Those are two words that hold a huge meaning to our family right now. The week we celebrated a nation's freedom and independence, which to me a is big important celebration. This week though as a family we had our own freedom and independence to celebrate. I honestly am not sure I am going to be able to put into words what these last four days have meant to me. So what I can't put into words I will post in pictures. 

Wednesday even started my nice four day weekend. At the last minute we decided to go with Mrs. Tammie over by the zoo to catch the annual firework show. We grabbed some pizzas and drinks loaded up our trucks and headed out to have fun. The show started and H was full of anxiety. We tried to keep him outside but he was so unhappy. So he sat in the truck, in his car seat, facing the opposite way. It was a spectacular show regardless. 

Thursday we prepared for our evening at some friends house. They usually hold big parties on the holidays so we knew what to expect. They are very aware of H and his needs so they are always very accommodating. We packed up our goodies to head over. The kids swam, ran around and had a great time. As soon as it was dark it was another round of big booms and bright colors. This time H stayed out in his chair for about 5 or 10 minutes before it just became chaos for him. Thankfully Tara was around and got a DVD set up for him in the house so he could watch Cars and we could continue in our festivities. 


Friday!!!! Happy 11th birthday Hannah! Today was probably the most fun out of our whole vacation. Hannah had her friend Meghan over for some girl fun. They painted their nails and spent time just having fun doing what preteen girls do best. We did a bit of swimming, baked a cookie cake and I pampered the girls a bit. Once Meghan left we headed out to the stables briefly to help out and then decided to head out to Clyde Lake Park to their festival. The band we like Belle Plaine Revival was playing that evening and they had fireworks so we loaded up the kiddos and headed out. It was nice to get away for a bit and let the kids have a play to run around. It wasn't that packed and it was just the right amount of things to do. We walked by the lake, ate some great food, listened to music and watched the fireworks. Tonight H sat back in his stroller and enjoyed them while he kept his headphones on. Hey progress is progress. 

 Yesterday it hit me. Yes we won't go on some big family vacation anytime soon but this was a vacation for us. This was our getaway. This was our freedom that we had been wanting for sometime now. H was doing so much better than we expected and we really capitalized on that. We had gained this sense of independence from what our normal was. We had done so many things the last few days we hadn't done ever or in a long time. It was so wonderful to go out as a family and just let loose and have fun. We didn't worry about Autism or the things that went with it. We refused to let it hold us back this week. We were not reckless but we just decided to let go a bit and know that we can't let Autism control this family. We were out by water, open fields and crowds all things that can set off meltdowns, eloping and craziness. H was calm for the most part and took it the change of scenery with ease. He actually enjoyed sitting in his stroller. He were calm and relaxed and that made him calm and relaxed.
We let the kids go in the lake yesterday and H really didn't want to get in it. Sort of a relief actually. We spent the entire evening walking around walking out on sandbars, playing, snacking and skipping rocks. I taught the girls how to skip rocks last night. H even wanted to do it. I sat by the lake with my kids without a care in the world and threw rocks in the water and it was like I had taken my kids to Disney World. They were excited and laughing, running around and having a blast. There was no fighting just fun pure relaxing fun. It made my heart smile. I really didn't want to see the evening end. I didn't want this weekend to end. Its been ages since we really did things like this as a family.
We sat around and ate our dinner that we packed. We had a nice little picnic. We made s'mores well non cooked s'mores. The kids enjoyed the treat. The fireworks started and H calmly sat there and watched his ipad. No crying or getting anxious he rolled with it. With about 7/10 minutes left in the display Chris calmly got my attention in turn got the girls attention. We looked over and low and behold his headphones were off. His hands slightly covering his ears but he watched intently. I jumped up grabbed my phone and started snapping pictures. This was HUGE!!! No one drew attention to it and as the finale came we held our breath. He covered his ears with his hands but as soon as it was done we cheered! Not for the fireworks but for H! He did it! He overcame a fear an anxiety that really set him over the edge. H was cheering but I think it was because everyone else was cheering. It was at that moment I realized we don't need therapy to make these huge transformations or money we don't have we just need our own measures and persistence to get it done. We created major transformations in our child this weekend at little to no cost to us and we enjoyed it as a family.
This was our independence day our day to celebrate our freedom from Autism and all that comes with it. This was our big hoora that we will continue to celebrate for years to come. Independence Day takes on a whole new meaning for this family!