Friday, June 28, 2013

Counting my blessings and being thankful for life.

10 days ago I wrote a post about failing. Several told me I didn't fail that we just hit tough times and that it would all get better. I still feel like I failed but it did start to get better. Why do I feel like I failed? I feel like I failed because honestly I shouldn't have to count on others to help my family when we reach a point that there could be no return. However I am so thankful for these people. Some were great friends and others complete strangers that came to our aide in our biggest time of need.
How did the help you might ask? A complete and total angel went to take care of the remainder of our rent that was past due. Anther angel gave us money to help us get ahead on the next months rent. A great friend helped us cover the cost of the girls to go to the youth center so that they could come spend the summer out here with us and let us be a family. Three amazing friends filled our house with essentials and groceries and with the excess I have I am paying it forward to help a very special family who is also in need right now. And last but not least those who made donations of money, diapers and wipes. We are so excited about how many diapers we have at this point because we all know H is not going to be wearing underwear anytime soon.
For those things I am counting my blessings. I know that there are still wonderful people in this world who really know how to step it up in time of need. To those who are wondering how we are able to get things like Tennis and a birthday party and a few other extras right now, no we are not squandering away the money we are using what the money was given to us for and making things happen for our family. The tennis is for H and its for kids on the spectrum. This will help with turn taking, hand eye coordination, following directions and peer/social interactions. Its a small group setting but still its a starting place. We can't leave H out in the cold with no way to celebrate his birthday so we have been given help to make sure he has a party. Thank goodness for cheap venues and great people. He will be doing gymnastics for this years party so we are super excited about that.
Last week was and even part of this week has been very trying for not only just myself but for the family. We got devastating news Wednesday afternoon about a coworker/friend. While we all hoped and prayed for the best it just sadly wasn't meant to be. She left this earth early Saturday morning after they established there was no brain activity and nothing more they could do for her. She left behind three beautiful children and several children she has fostered over the years. It was truly hear breaking to hear and still hard to comprehend.
Michelle was a huge advocate and supporter for our family since last year. She gave me many avenues and resources to help myself and my son while we endured this crazy adventure we embarked on. I usually would spend time in her office twice a week if not more discussing progress, antics, frustrations and accomplishments. I would listen to hers. She was a single mom dealing with two children under the age of 5 with their own set of special needs plus a teenage son. She was a saint! We often joked our kids were two peas in a pod. H would learn from her youngest daughter. I would always ask for the answers before H even attempted the things her daughter would do. I cherish that bond we had as not only her being my supervisor and coworker but my mentor and friend. She was suppose to join us at our ARD meeting the 17th of July. I know she will be there in spirit guiding these fine folks who will evaluate H in making the right choice for him and our family.
The other huge loss we suffered this week was the horse H has been riding since November. There have been countless pictures and posts about H and his horse Slurpee. The big, giant, 21 yr old 16 hand tall horse that H loved more than anything. Last week Slurpee fell ill with what we thought was colic. We spent a few hours by his side at the stables all the meanwhile H was laying right there over him rubbing his belly kissing him and telling him he would make him all better. It broke our hearts to hear it but made my heart swell with pride to see him show such compassion when he has really never done that before.  The following morning he was taken to the vet. Saturday evening we thought he was taking a turn for the better. Sunday the vet said if he saw no progress by morning he would have no choice but to put him down. We all prayed, we prayed and begged for a miracle. How could we suffer another blow this week?! Sadly around 10am Monday Slurpee crossed the rainbow bridge. I felt so angry and let down. We still hadn't told him about Michelle and now we have to explain to him Slurpee.
Monday after tennis we took a trip over to TLC and started the process of explaining how Slurpee would not be here anymore and he would have to ride another horse. At first he insisted upon his horse we left with him agreeing to ride Tiny. I was good with that since it was the only horse that had the complete opposite features and coloring of Slurpee. However that plan backfired when I realized he was used by another child. We rode Sheeza the horse that could have passed for Slurpee's twin. While at first we thought this was great it ended up confusing him and now he things Slurpee is back and that death is not actually final because well in his mind Sheeza is Slurpee. Sigh.
They say bad things happen in three and I am sure hoping those are our three. I know we are never given more than we can handle but I feel in this case it was way more than we could handle, however we overcame it all. We are picking up the pieces moving on, making new paths, taking on new challenges. It is time to put our focus on the things we have coming up. Our biggest is the meeting on the 17th. Our other big focus is the girls and enjoying and making the most of the time I have with them here.
We are so blessed right now we are so grateful for the life we have. It could be worse and we could have ended up in a much more different situation but we didn't. We were given the chance to take this as a learning experience and make sure we make the most of what we are given. We might not ever get that second chance again.

Tuesday, June 18, 2013

I failed

The last 5 days have been a grueling hell for our family. I hate writing about financial stuff but truly right now this is the burden that has overruled our family and caused so many things to come to a screeching halt for us. If ever there was a time to feel that the world was out to get us and the deck was most certainly stacked against us its right now. We haven't shared too much simply because we don't want pity and those to feel sorry for us. I figured I would share the story after we had gotten our news so that way it wouldn't seem like everything was centered around this event.

I guess for it all to make sense giving the backstory of what is going on might be in order. Its stupid and complicated so I am going to give it up in a short summary so that we can move on. Two years ago Chris medically separated from the military. We were left with a nice chunk of change but we got stupid, well sort of. We bought a much needed second car, took a few too many trips I guess back and forth to Dallas, I stayed home, I bought myself some clothes, you get the point. Fast forward a year and its weeks before Christmas. Chris' ex wife suddenly decides to reveal her whereabouts over the last year and now wants Chris to pay up. Mind you we tried but the previous state she had lived in sent it back saying return to sender, she does not live here, her case is closed. Leaving no forwarding info or contact information we assumed she took off and wanted to sever ties. WRONG. Chris suddenly owed over a years worth of child support. To sum it up no tax returns and about 70% of his wages are now garnished until well the state allows him to dispute it which is 3 years. Hop forward to this spring and the VA decides to throw some big roadblocks in our path and now suddenly our housing money is being cut off. They want US to pay THEM back 1082.00!

Throw in all of H's expenses and it really is enough to make one's head spin. I mean the stack of medical bills are 99% his. We joke about him being the million dollar baby but man if you total up his expenses from birth in the NICU until right now I wouldn't doubt it. I have not had the pleasure of a special needs child until just recently so I now see how all these families go into debt etc from this life.

So you see everyone wants to test the theory of squeezing blood from a turnip. Of course that means robbing Peter to pay Paul but after robbing Peter so many times it burned us. Twisting our budget a million ways still had left us short, too short for comfort. However up until this point we were ok. We might have paid rent a bit late but we managed to get our bills paid before services got disconnected. However the whole robbing Peter to pay Paul has come back to haunt us now. We put off some debt we thought we could ignore and now it's hit us again and took a toll on Chris' paycheck. Simply put teenagers working fast food joints and those who wait tables literally make more than Chris does each paycheck.

In a sheer state of panic last Wednesday I realized that our housing money might not be coming back for a while and started to fill out their form to explain the reasons why we could not pay them back the money they say we owe them. That night it hit us we are really about to lose it all. Chris grabbed a box and proceeded to pack a few draws of our china hutch. My heart sank. I submitted my resume to local preschools back in Dallas. I have to find a way to prepare myself if this is how it must go.

The following morning I began my quest of trying to get us out of this hole. I stuck a deal with our electric stating I could pay 50.00 on Friday and the rest the next week. Praying that we would have some sort of help by the 20th. I went to the leasing office and explained the story taking documentation to prove I wasn't a low life slacker who wanted something for nothing. I also divulged that we have gone without eating to conserve food so that the kids could have it when they are here and that H has something to eat each night. I wasn't lying. Chris and I had not eaten dinner in nights. I ate at work because the meals are free since I eat with the kids in my room. Otherwise I just drank a lot of water or lemonade to keep my feeling "full"

Thursday evening I got a burst of hope that maybe just maybe things would work out. The leasing office pooled their money together and bought us some groceries even dog food. It wasn't much be still enough to make a huge difference. A friend dropped off toiletries and cleaning supplies things that we needed. Two friends made a donation on H's fundraiser page. I suddenly had hope for humanity. I had hope for us.

Monday I managed with a sick kid and all to round up every financial detail needed to head over to the Salvation Army. I was told the lady was out and to come back today. I was down but not out. I took the last 450.00 out of our account and gave it to the apt in good faith that we would find a way to get them the rest. I was losing time and resources fast. Every church I called was out of money or could not help us in the way we needed it. It was suddenly like a nail biting baseball game. Bottom of the 9th bases loaded 2 outs and you have one more chance to make or break this situation. Game was called however on the account of rain only to resume the following morning. It was enough time for me to just try and come up with one last plan.

Here it is Tuesday and for some reason I thought this was our day. I had worked so hard to get everything we needed, collect info and make the calls necessary for us to keep doing what we needed to do. I prayed like I have never prayed before, I prayed that this game was not going to be over. It couldn't I had worked so hard to get us this far how on earth could we lose it all. We always have come out on top so why should this time be any different. They just want to see us sweat thats all. Right?

With a giant folder in hand I grabbed my cranky child's hand and walked through the doors of the Salvation Army. 7 people were ahead of us and I prayed again this would go quick. This was not an outing I wanted to take my Autistic child on but with him having a fever I had no choice. After an hour of waiting our names were called. I had no idea in 30 seconds this game was going to come to an end. For those of you cheering for the underdog, thank you. However bottom of the 9th bases loaded 2 outs and a tied score we lost. It was like the grand slam of losing. Salvation Army was unable to help us because we pay more than the fair market share for our place.

My heart was heavy, my stomach in knots as I drove to the office to tell them of our news. Our landlords like I have said have been amazing through this. I hated to have to tell them that this was it. I walked in and apologized over and over. I failed. I let them down. I let myself down and worst of all I let my family down.

I don't fail. I hate to fail. I was a failure as a child never doing well in school, never doing well as a daughter and sister. I thought I was making up for it now in adulthood but I sadly was not. I had to utter the words I hated the most "I failed, I am sorry".

You might be asking "What now?" I don't know and I will be honest. It is in the hands of my landlord. It is in the hands of God. What is to become of this family is no longer mine to figure out. The only glimmer of hope I hold at the moment as that we MIGHT have qualified for food stamps and MIGHT qualify for medical insurance. I won't get my hopes up but that lady on the phone was an angel! She gave me information to help Chris and to help us maybe at least keep our electric going. She has become our saviour for now.

 I just pray that her next phone call before this day is over is something of good news however I am living by the motto "Prepare for the worst and hope for the best." Sounds sort of negative and corny but honestly I feel if I am more prepared for failure and let downs it makes the best outcomes even more enjoyable. So please say a quick prayer for us as we hope that we hear some sort of good news before this day is over.

Sunday, June 16, 2013

Father's Day

Well another Father's Day has come and gone. Our day was not some big planned out event in fact it was far from it. We reorganized our our living room and H's play area. H has struggled the last few days with his behaviors and I think this is mostly in part to his Asthma and Eczema flaring up to the point it is making him crazy. That and his eye issue has just sent him over the edge. 

I spent some time looking through pictures today and wanted to make something special for Chris. I found some of my favorite pictures of Chris and H together. Right now the two of them are sitting on the couch across from me looking at pictures. Chris is showing him pictures of his NICU days and as a baby. H seems very into this which is awesome. Just a few months ago this was a pipe dream for us. He had no idea the concept of pictures and that he could actually be in a picture and be right there in person. It was a concept he couldn't grasp. Suddenly after so much work he gets it. 

Just last night he did something we had not ever heard him do. He sang an entire song, well with some help and skipping around, but still he SANG to US!  We laughed and we cried. Looking at Chris' face it made it me see a side that I had not seen in awhile  It was a face that said " I am such a proud father I don't care about anything else right now!" It's true we were both so proud because all that heartache and hard work is really paying off.  He will never cease to amaze us!

Sorry the video is huge but I want everyone to see just why we are so excited. Please excuse his attempts to strip towards the end. He was getting a bit excited and when that happens well his clothes seem to come off. 

So I will leave you with some pictures I found of some great father child bonding moments. There are so many more but these are the ones that I just feel do him justice as a daddy. 

 Dove season. I guess it's never to early to get em hooked
 Teaching the kids the finer points on taking care of Shadow
 Working with daddy at the fire department
H, daddy and B at the dog park
Daddy and H getting ready for the rodeo

Thursday, June 13, 2013

I said UNCLE!!!

I can clearly remember as a kid playing that game where you did what you could to hurt the other to the point they would scream out UNCLE! You would stop what you were doing laugh and move on. The marks would fade quickly after and the whole ordeal was a distant memory.

How I so wish this was the case as an adult. I wish I could just scream UNCLE! and all my worries and troubles would just vanish. I tried that tonight and the stack of bills are still on my table, the hate mail from the VA is still here next to me and the harassing calls are still coming strong.

I never like to talk about our situation because its such a stupid and well I am not even sure how we got here. Ok well I do but I can't still wrap my head around this. All I know is now we sit here and cross our fingers each day that when we wake up we will have gas and electric and when we get home there isn't a nasty gram from the front office asking once again where our rent is. Good question we would love to know where our money is. We would love to know why the VA finds it ok to take almost 2 years at this point to help compensate my husband for the years of service he provided. 14 years to be exact. How about the housing assistance we should be getting while Chris is in school? How do they get away with this stuff? How about the lovely ex and the state of Tenn that finds it ok to garnish 75% of my husband paycheck every two weeks? I promise when I get these answers I will let those who want our money have what they need. 

I have never begged or asked for money, I lowered the head the first time many years ago I got on assistance from the state. I threw caution to the wind last year to apply for SSI for H and got denied. We did get approved for $11.00 a month in food stamps ( total sarcastic tone here!) The only time I really asked for money was for our Walk team for H and that money didn't go to us it went to the organization. However I just recently set up a donation page out of desperation to see if anyone at all would help us. Here is the link if you do so feel inclined to help us.

I have done the paperwork for HHS to get food stamps and medicaid  I am hoping to get SSI for H this go round again I doubt it. I also plan on selling non essential organs and limbs that i find no use for to help off set our cost. Ok that last part was a joke but man when you get desperate you get desperate. You know it's bad when you don't have the 25.00 you need to get your son's birth certificate for his preschool registration. I am serious when I say that.

Everyone talks about hitting that rock bottom and know that you will just move on from there. You know that it can't get much worse. I am hoping we can call this our rock bottom and we can finally feel the end of this violent storm that has ripped through our family leaving us desperate and confused. It's like sitting out a nasty tornado that comes ripping through praying that if you must sustain any damage that its superficial and easy to fix, only to walk out after the storm and know that its just a total loss. 

Now it is time for our family to walk out pick up what pieces we have left gather up our strength and courage and push forward. Take it day by day. We can at least say that we have each other and those who are close to us. Only time will tell where we end up but for now we are just going to take it as it comes. 

Tuesday, June 11, 2013

IEP, IFSP, ARD, ECI and all the other things in between

So some pretty crazy information has been passed my way over the course of the last few weeks. My son only has 12, well now 11 more ECI sessions left. Before everyone starts passing around the congrats and celebrating its not because he has graduated and made enough progress to leave the program, its due to the fact that in 11 weeks he will be 3!  After 3 years of age the child in ECI graduates to the school district. To those of you who do not have special needs children or have never had to deal with ECI do not even ask why 3 is the magic number and not 5 when they are school age. This is how the program goes and I assume that because they have preschool/pre-k special ed (PPCD) that is why. 

For the last 6 months I have worked my behind off to learn all the ins and outs of what was to come for us. Of course I thought 6 months was plenty of time. After all most of my college courses only last 3.5 months and I have done fine so an extra 2.5 months to prepare and study up should make me golden right? I have never been more anxious and worried in all my life. Even my toughest course, Abuse and neglect, was easier to get through than this. I made a reference today that this has all been like taking the college course and on July 17th is my final exam, the moment I will make or break this for my child. 

You might be asking why am I assuming this all comes down on me when after all its going to be H they are evaluating and testing. Well it's because I am his mom and his advocate. If I am not going to fight for his services who is? If I don't prepare myself, get the information, gather those to speak on his behalf who will? I have been going to every meeting I can make, talking to others who have been down this road and read up on my own what to expect. Maybe this is more like childbirth than preparing for the big exam. Regardless I am anxious. 

I have done a 504 with Hannah and it was nothing. However it was easy given we all knew ahead of time her severe learning differences/ disabilities so her teachers knew exactly what she needed to succeed. No one at AISD knows who Hunter is or what he has been going through so I will relay on every evaluation, assessment, exam  and person who has interacted with him to help us in our plea to get H the education he deserves.

Over the last year ECI has been one of the best things that has happened to us. Our coordinator and our therapist have been amazing. They have found us resources that have helped us far beyond what we ever could have found ourselves and been a shoulder to lean on when we have felt down and out. I know in 11 weeks while I will be so excited my baby is 3 I will be so sad to have lost such a wonderful service that has helped us so very much. 

Today I have compiled a list of who I would like to attend our meeting next month, what information I will need and letters from those who I would like to speak on our behalf on why we need these services. My work is cut out for me seeing as I have a meeting with HHS to get state assistance for us and submitting my paperwork for SSI again. I am sure we will be denied but hey you never know until you try. We even set up a fundraising page to help us alleviate the costs we are incurring because of the therapies and appointments. So far no luck but it was a long shot anyways not that we were honestly counting on it. A friend suggested it so we went with it. 

I guess it is back to work. H has his iPad and eaten his cereal and eggs for dinner. I can use this time that he is distracted to get things done I need. I am still sitting here staring at him and wondering how did we go from IFSP's to IEP's! Apparently time keeps on moving even when you are busy trying to keep it still! 

Sunday, June 9, 2013

Our summer fun

Ok so our summers are different around here. I work full time and so does dad.  We don't take vacations its not an option sadly for our family. But here is what we got so far...
 Brothers swimming
Morning home therapy
Frozen Yogurt
fabulous summer attire
A little one on one
Our beloved nap time
Therapuetic riding on the sensory trail
Feeding the most awesome horse after therapy.

Saturday, June 8, 2013

10 Things I am thankful for

Found another blog hop this morning and this one was talking about being thankful. I like to take the time to say thanks and know what I am thankful for so I jumped on the hopping wagon and gave this one a shot!

  1. I am thankful for the normal cliche but I will say it anyways because I truly am. I am thankful for my family. I am thankful for the immediate and extended family. They are all very special to me and without them I would be nothing.
  2. My job. Times are tough and while there are days I would like to throw my hands up and quit I know that I am lucky to have the job that I do have. There are plenty of people around here who are struggling to find a decent job. 
  3. The team of doctors and specialist that we have for our man H. Between West Texas Rehab, ECI, Cook's Ft. Worth and his pedi in Abilene we wouldn't be making the progress and seeing all the wonderful things we see. 
  4. My dogs Schatzie and B. Without them I would be cleaning the floor more often when H decides he doesn't like what's for dinner.
  5. My dear friend Dani. We decide to go to Dallas for a few days and she comes over and cleans and remodels the house. Not many people can say that about their friends so we are lucky to have her. 
  6. My friends. The ones who have been by my side through thick and thin even when I have vanished for months, been out of touch and been an idiot they are still right there and we never miss a beat!
  7. vanilla ice cream and coke. I could live off of Coke floats and I just might if the heat keeps up the way it has this summer.
  8. For modern technology! I swear I would not know what to do with myself if it wasn't for the internet, FB, blogging and email. These are the things that get me through that help me when I am in need of finding the answers, getting away and just needing to lose myself!
  9. NAP TIME! Both in my preschool classroom and at home. This is my time to relax, reset and realize what I need to accomplish and what I have done so far. Like right now this is naptime and H is on the couch passed out. God bless naptime! 
  10. I am cheating but I need to give one more shout out to the family. So yes one more time I am thankful for my family. My husband, my kids and my siblings. I love them all and really am so thankful for them!

Friday, June 7, 2013

I hit a turning point when......

I saw this on a blog hop today and thought hmmmmm this is something I know I can handle.

I hit a turning point in my life when I realized many things. I have had several turning points and each has played a key role in shaping the person I have become. Some of the bigger turning points is when my younger brother passed away. He wasn't sick with cancer or killed in a tragic accident he died because of something so sad and preventable. He had a troubled life and he wanted to get make it better and make the changes he needed but sadly at 19 it wasn't his choice to make anymore. This was devastating for us. However I realized that I have a family that I now know won't be around forever and I need to let them know I cherish them and love them. I try to be closer to them because you just never know when their time or your time might be up. 

I hit a turning point in my life the day I realized as a single mom several years ago I couldn't do this all on my own. Yes I could do the parenting things all on my own but to make ends meet, to support my family I needed something more. The day I went to the Health and Human Services office was the most humbling day ever. For years I judged those folks whom walked through those doors praying for a chance to get the help they needed to make ends meet and take care of their family. However the day they handed me a card with my food stamps on it and said they would cover child care for me so I could work was by far one of the most amazing days of my life. I have no shame in that. In fact to be honest we are in the process right now of applying again because we need it. For those who know our family situation know this is crucial for us. 

I hit a turning point in my life when I married a man who is in the military. I never have understood why it was always so glorified once I met and married Chris. I, until meeting Chris, thought it was such a wonderful life of moving around, nice houses, great insurance, instant friendships. HA! We didn't move around well, I got moved three hours from home but it was his last duty station unbeknownst to us. I also found out many people have been here for like 10 years some more some less but so much for traveling the world! Yes the houses are nice but the money isn't as great is everyone makes it out to be. Heck most military falls right above the poverty line. Ironic huh? I loved the insurance actually its one of the key things I refuse to complain about. Base doctors yes, the insurance not so much. Instant friendships. I struggled to make friends and when I did I realized most of them enjoyed high school so much they wanted to have it carry over into adulthood. I did make a few great friends in that time and I still cherish our friendships even though they have either moved on or no longer military like us. 

I hit a turning point in my life when I realized we had a son who had special needs. I loved him dearly before and I love him even more now. I always felt so sorry for those families who had children who had disorders, diseases and disabilities. How unfortunate it was that their precious bundle of joy was somehow damaged goods. I guess I needed to be taught a lesson because early this year we found out our son had special needs. He has PDD-NOS (Autism), SPD (Sensory Processing Disorder) and APD (Auditory Processing Disorder) He is by no means damaged goods and really taught us to take a step back, slow down, pay attention, live, laugh and learn more. I think someone was trying to tell me something actually. I have learned more from him these last few months than I have my whole life and my years in a classroom. 

Wednesday, June 5, 2013

Vacation! Just have to get away

I have been thinking about about how to compose this blog for a few days now. However I have been to jealous and to busy feeling sorry for myself to actually sit down and right this. I try not to feel sorry for myself because I really need to focus on what I am so thankful for. I am do really have a lot of things to be thankful for such as my great job, wonderful family, great organizations that want me on their team and appreciate my dedication and hard work. I often put my focus there but then when I let my guard down this big green ugly monster comes in and invades my thoughts. It makes me think of the book I read to my preschoolers " Go Away Big Green Monster".

As things in our life become more demanding and more prevalent than in the past it takes me to a place that I hate going. This year just like every other lately we will miss out on fun family outings and family trips. For the last few years we have wanted to take a trip either to go back home so Chris can see his family or just go to San Antonio and let the kids have fun and get out the norm of here. We plan on saving our tax returns and any extra money we get and put it in a fund for us to go have a fun family getaway. We get excited and think how much fun the kids will have and then it happens.

We sit back and realize two things..... Funding. Yep money truly is the root of all evil in my book. Between copays, medication, equipment, childcare, bills etc it all adds up and it comes out in the sum of a whole lotta nothin in our bank account. Then there is reason number two. H. Public places are just well not fun nor easy for any of us. A trip to the splashpad here in town not 15 min away could end in pure hell for all of us. Picture it a big open ground with water spraying, no fences, lots of chaos and lets not forget a giant playground and pond all with in eyesight of this very active, eloping toddler. Anyone who wants to tell me that he would be fine and would probably not even leave the pad is truly kidding themselves or just not spent enough time with my child to know his true capabilities. I give him 5 min tops before we are getting more of a work out than most of the guys on base get in a PT test! Think I am joking? I dare you to take him!

Then there is the whole issue of traveling. H can tolerate a trip for only so long. Dallas is even pushing it. If we drive the whole three hours without stopping for food, gas or just to stop he can do ok. We pay for it the rest of the day but his attempts to break free of his seat are really minimal at best. So a trip to San Antonio to Sea World is just to long. Flying you say. Hmmm.... Let's put a child who gets sensory overload in a space where he is confined and unable to move with all the sights, sounds and smells. He can't walk through Walmart without losing it. An airport would probably be a HUGE joke. So as you can see going up to Massachusetts to visit family is out of the question.

So here we are it's summer and my friends and family are posting their vaca pictures talking about how their kids love it and having the time of their lives. I am posting pictures of therapy and trips to The Legacy Complex where H does his riding for therapy. I try not to let the monster in that makes me jealous and and hateful. I don't like going there so I often pass over the pictures and keep going or through clenched jaw and stiff fingers write a small comment like " looks like fun." or "Have fun for me!"

I think back of my childhood and can't think of a time when we were out of school that we were not traveling. We went to Colorado, Disney, Hawaii. I was spoiled. I always said I wanted to do that with my kids. They should get to have as much fun as I did when we went out of town as kids. The last trip we went on that was not to Dallas to visit family or for a doctors apt was San Antonio. It was actually for a training symposium and Chris and I decided that the three of us, himself, H and me would go. It was during the school year so the others were unable to go. It was just what we needed. It was so great to be away we decided to add one more day to our trip because we felt so amazing. That trip was 2 years ago.

Ok so 2 years ago doesn't sound that bad to some. That was prediagnosis and financial chaos we are now dealing with. It was a three day trip and a day and a day of that was spent in training. We arrived the afternoon the day before the training so we could enjoy a little bit before I went off to the symposium the next morning. PS I skipped out early because I missed my family and wanted to go be all touristy with them and just relax.

In two week Sean will be having his 13th birthday. Him and a friend or two will head out to Fair Park Summer Fun in the Park. check it out it looks like loads of fun. It is a much better alternative to Hurricane Harbor or even Six Flags. I had thought about taking H but then I decided between the cost of admission and chasing him all over it might not even be worth it to go at it alone. However I see the pictures my friends post or look at their webpage and think "Ugh why can't this be us!" I refuse to try and torture myself or my family to take outings that I know are just to much. Yes I will never know until I try but honestly I would rather try when I can afford to be out some money and I am not flying solo to attempt these new things.

A friend a few nights ago sent me this link.... I want to take H and the whole family. I know they deserve this fun. We all do. H especially. This would be right up his alley. I want to start a get us a vacation fund but that is silly. Right now we need more things like the important things covered first before saving for a trip.

Special needs families in my mind need those vacations those times away. They face the reality of the disability or disease daily and sometimes a small escape is all it takes to just help lift up the family and lighten their mood. Our breaks are far and few between. It means cancelling apts, therapy sessions and other things that have become our daily norm. Typical families look at the calendar and say " Ok July 15th through 22nd we will pack our bags up and head to the beach for the week." Jr might miss a soccer game, Jane might miss cheer practice, but its ok. Those misses aren't as crucial to their developmental progress is cancelling a week of OT, PT, SP even ABA. Those times missed are crucial times of learning for our children.

The flip side is to that however, families and children do need a break. I have started doing some home therapies with H to compensate for the week he is missing this week due to WTRC being closed for summer camp. This would have been the perfect week for that family vacation!

To my NT families taking those summer trips, and outings. Good for you. You are lucky to get to do those things for your family. Do not take those for granted. Cherish those memories and that time with them. Take lots of pictures so you can sit with your kids and look back and reflect on those fun times.

To my ASD/ Special Needs family. Take those pictures of your small trip to the pool, zoo or what have you. Do not take for granted the time you are spending with your family no matter how small or short that outing might be. Take those pictures, post them for all of us to see. Be proud of your family and what you are able to do together. Those are moments in time you won't get back.

Sunday, June 2, 2013

Army Wives

My gal pals know how addicted I am to this show. I have followed this since day one! The show has been great to watch and there are somethings that I can completely relate to and then others that just are so far fetched you just have to shake your head and wonder what they were thinking when writing the script. Tonight however hit home on MANY levels. 

I am married to a man who was military for 14 years. He did various jobs while he was in and most of those required frequent deployments, dangerous assignments and lots of dedication.  Most of this was done prior to our meeting up but even though he was no longer with doing things like EOD (Explosives) things from that still carried with him. 

It took me some time to realize exactly what was going on. I just figured the transition of being around my family and that coming back from Korea the whole readjustment. I let it go for a while but then finally it hit me after asking around they told me about PTSD. I had heard of it but not really known much about it. I started reading up on it and understood that this is what Chris was dealing with. 

Watching Army Wives tonight and seeing one of the characters come home from his first deployment, watching friends be killed, killing a man with his bare hands I suddenly found myself able to relate. Here sits his loving devoted wife trying to make his return home and transition back trying to help him adjust and feeling like she is failing. 

So many times I wondered what it was I did to upset him. I couldn't understand why he would get so angry and upset. It seem irrational and over the top. How does someone actually act like this? I started to ask him questions  about what was going on. When he told me he had no clue he wasn't even sure what was setting him off that is when I become more concerned and started trying to find someone we could trust to confide in that had been through this to help him. 

I am watching this episode unfold and watching him become so upset over completely irrational things and thinking "my goodness! This is something I can totally relate to!" My husband doesn't enjoy being this person. He has been trying to get help. As easy as those would like to believe it should not be hard to come be it actually is. The VA is bogged down and so far behind. Many seem to fall through the cracks, my husband included. It doesn't seem fair or right but sadly this is how it goes for them. 

I have many military friends and some have not had the opportunity to deal with deployments and all that come with it and others have. Some have seen these exact things I am speaking of and others might be fortunate and never have to deal with these things. All I can say is to encourage help, find him/her that person they can trust to open up to that can get them that help the need. They don't enjoy living like this anymore than we enjoy having to often take the brunt of their episodes. 

Even at his worse he has never hurt anyone around him. He might be angry, loud and even irrational but as quickly as it happens it goes. More often than not he seldom realizes that most of it occurred, which of course worries me.  I  encourage any of my friends who have dealt with this and been physically hurt to seek help ASAP. No one should ever have to suffer like that. 

The other side of this that hit me was watching the Montclair family who had a child with CF. Watching the mother balance the checkbook, make sure that her child who is frequently ill and needing extra help hit me just how much again I could relate. Many think military families have it made. Granted we are military anymore but when we were we still had our struggles despite having insurance and money for housing. 

There have been times we have gone around this house looking for things to sell just so we can make sure that H has his meds, our electricity stays on, there is gas in the car and of course food on our table. I hate being in this place and no one wants to have to turn to a friend or family to get through till that next pay day. We want those around us to believe we have our lives under control and that this is a minor setback. Sometimes however it isn't but who wants their family and friends to know that they are constantly broke and unable to make ends meet? 

Nothing upsets me more than having to choose and rob Peter to pay Paul. I have to say that our family has not ever gone without. We have somehow managed to finagled our way through these tough times lately. That has often meant put off rent to make sure the other things stay on, beg to extend due dates, and stretch every dollar to its fullest. 

Yes, yes I know one day we will look back on this and maybe not laugh but chuckle. I know that soon this too shall pass and it will all be a distant memory.

Saturday, June 1, 2013

1 in 50

It is now being said that 1 in every 50 children will be diagnosed on the spectrum........

In the past I would have said those results are insane and probably so far fetched or that maybe just maybe doctors had just wanted to hand out a label to any parent that walks into their office so that it will give them an answer to why their child is so difficult and non compliant. That was my line of thinking about a year ago. 

In that last year in the small community I live in I have encountered at least 4 more children who are on the spectrum. When I refer to small community I am talking about the apartment complex I live in. I think but I am not certain there a few more but I really haven't done my research. Still that is some pretty crazy statistics. Out of those families I have encountered all but us are military families. Hmmmmmm

Lately my circle of friends revolves around my Autism Community. I am ok with that. We tend to stick with what we know and since we all know ASD we all know what to expect. Now to expand upon this a little more just to prove to you what a small community Abilene is I will tell you just how much I believe these statistics and how crazy it is to see so many diagnosis.

H used to attend Day Nursery and the director was amazing she was there for us when H was really struggling to meet milestones. She had a grandson the same age also named Hunter. When he would do drop in he would be with my Hunter. After I got my job at the CDC I decided to move H. Sadly that proved to be a good move since that center had to close its doors. However in that time I came across a lady named Tamara on Facebook who was trying to obtain a service dog for her son Alex. I was so happy to come across her I messaged her and ended up going to her house one evening.  Upon hanging out I kept staring at her Hunter thinking boy this kid looks familiar. Finally she made a comment about her mom and how she was on her way over after work. I casually asked what she did. She told me she was the director at Day Nursery. My jaw dropped. 5 minutes later we were reunited with Denise his old director at DNA. Hello small world! 

The family I met as again just by chance. We were going out of town and needed someone to let our dogs out. A lady by the name of Dani agreed to help me out. She has two young boys one of which is close in age to H. We had no idea really at the time our connection would become more than dog sitting. Suddenly we got to talking and I discovered her child was on the spectrum.  Really what are the odds right?! We have actually become very close and have really helped each other out when life has been hard on us. Her husband is active duty. Again what are the odds. 

I met another mom on one of the FB pages for Dyess. She was talking about our ASD child who could escape his bed. I started talking to her and we became friends. Her son was on the more severe end of the spectrum. Her son is the same age as H. She also has a son who is a little younger. We go to the same rehab facility and are apart of the same support groups. Her husband is also military. See I am really on to something here right?

In the fall of last year we were told a young boy would be starting our preschool classroom and possibly on the spectrum. He was a single dad who was in the military and trying to actually get out since he was the sole caretaker of his 3 year old son. After some time he joined the support group we created on FB called the Spectrum Connection. His son also goes to WTRC. He lives in the same small community as I do. 

I often frequent the base swap pages on FB to find great buys for H. There was a cute pair of John Deere Boots that were a great price so I messaged Brittney, the lady selling them, and said I want them! While discussing my pick up arrangements I discovered we lived right around the corner from each other. I told her I would have to come later that day as my son had therapy. The details were set and I was picking up the boots later that evening. She messaged me later and asked me about what therapy my son did etc. Turns out her son is on the spectrum, and she also goes to WTRC. Her son is a few years older than mine.

 I should point out at this point all my encounters have been male that are on the spectrum. Even more proof that how real these statistics really are. 

Last night I was invited to a home business party. One of the ladies there had a child on the spectrum. Her husband used to work with mine. We actually spent NYE with them at the base bowling alley right before Chris and I got married. This however was back before I really knew much about ASD. I just thought he had ADHD. Anyways the lady whose house we were at had three young children. I had noticed her profile picture back in April was the blue light bulb for LIUB. I never however want to ask a parent if their child is on the spectrum because well that can be offensive.  Anyways we fast forward to this afternoon and she mentions something on H's page about horses and her kids and I message her and ask if she had a child on the spectrum. Turns out she has two. She also lives in my small community. This time however one child is a female the other is male. Her husband is military. We have really discovered a nice bond in the last 24 hours. It also is amusing to know she used to work with my husband. Now lets all sing "It's a Small World!"

Now these stories do not include friends I have met through Chris or from friends of friends who have children on the spectrum. This also does not count the friends who have not had their child tested or have not received their diagnosis yet. So really think about that. Just here in Abilene in my little circle of friends. I didn't set out to meet these ASD families we just happened to meet by chance. 

So if you haven't clicked on that link at the top maybe you should. Those statistics are pretty outrageous but so true.