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!