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?

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:

About A Mom

Creative Life Antics

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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 --

Sincerely,

Glen VanHerck

GLEN D. VANHERCK, COL, USAF

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. 

Independence

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!