Wednesday, April 2, 2014

Show your support

If you haven't heard its World Autism Awareness Day and April is Autism Awareness month. In honor of this day we do what we call Light it up Blue. You wear your blue, decorate blue, you find some way to show and share the support. For most families like us its a great day to get the word out about this ever growing disorder that now affects *About 1 in 68 children has been identified with autism spectrum disorder (ASD) according to estimates from CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network and *ASD is almost 5 times more common among boys (1 in 42) than among girls (1 in 189) This is according to the CDC Data and statistics from their latest research. That is a pretty scary number if you think about it. Chances are you know someone, probably a family with a son, who has a child on the spectrum and either they don't know it yet or you didn't realize it.  
I have been asked and apart of many conversations and debates about the every popular Autism Speaks organization that leads the nation in Autism Research and is the name behind the every popular walks you hear of around this time of year. While there are many things I raise an eyebrow to with this organization and realize that not always does Autism Speaks, speak for my family, I do know what they provide to families resources that are very beneficial and I have utilized lots of what they have.  However supporting small local organizations and families is not something they do.  So why do we walk for with them and raise money for them?
If you ask most families who are given the news that they themselves or a family member is diagnosed with a disability, disease or disorder the first thing they do is look to the world wide web to find support and resources.  Most who are diagnosed with Breast Cancer look to the ever popular Susan B. Koman Foundation, however now they have been in the news for their own set of controversial issues, If you are familiar with Lance Armstrong and his organization for cancer, Livstrong, you are aware of the controversy behind that.  I have looked to Autism Speaks since day one for all our Autism needs not even aware there are other organizations, not really locally, that can also provide some great information and resources however they don't do the big walk that AS does. Not that I am in this for the walk, but just like the Race for the cure, Light the night, The 3 day I walk because its a feeling of belonging. I belong with these families.   Remember Cheers? " You wanna be where everyone knows your name? Well this walk to us is where everyone understands and shares support. 
I debated heavily this year on doing it or not. I am slightly competitive and while I know this is not a competition at all I was more in it to raise more money than last year and have more walkers with us too. However the more I think about it all my heart just isn't as into it. Chalk it up to a preoccupied mind maybe, but part of me believes its due in part to my new found thoughts and feelings on the organization. I love raising money for a good cause, however I would love to raise that money and keep it local. We have so many ASD families, ours included that could truly benefit from the funds to help cover the cost of therapies, doctors, aides, respite care and equipment.  Autism Speaks however doesn't do that for us. It's not their fault its not part of their organization. 
This year while we light it up blue to show our support, and we will continue to do so just like those wear their pink during breast cancer awareness,  next year we will just not fundraise for the big walk here in Abilene. I will walk because I want to be amongst those who get it and understand. I am not sure it makes sense but I just have felt so conflicted by it all.  I do have plans though. BIG plans or so I hope. I just need to get some thoughts on paper and some time to get it accomplished. 
I want to do a walk to raise money to help our families locally. I want to continue to raise awareness and help other families but to give them local resources and help them feel that they don't have to wait till April to connect with them.  I want to bring families together and utilize community resources, create more resources to help families year round. It is going to be a huge undertaking and one I want to take on so that families don't feel so hopeless here.  That there is something here in this community to help them year round.  I found my mission and my calling. I found a community that I can possibly reach out to and help an its an amazing feeling. So in a few months when I am pulling my hair out and stressed trying to pull this off can you guys remind me of this?! HA HA just kidding. I think........

Wednesday, March 26, 2014

Fives years, lessons learned

Earlier this week I went to my late brother's facebook page to see if anyone had been leaving comments in memory of the anniversary of his death. When I do this I usually scroll down and read all his last moments he posted on the world wide web. Its a bittersweet time for me. I can recall his final days and get last glimpses into what he was doing, but at the same time I can still see the day back in February that we had our huge fight for everyone to see. It was a stupid status update he posted out of anger towards me and instead of ignoring it and just moving on I took the bait and had it out with him. I have since removed my words because it was to painful to keep reading over and over. In a way though I think it was my way of trying to plague myself with survivors guilt and remind myself I am still alive and he is not.

I had mentioned this on my own facebook page and was told that it is hard to get over survivors guilt. That its something that could just stay with me forever. In ways I guess I am ok with that. It gives me the reminder that I need to never walk away angry, never say hate and above all at the end of the day say I love you! I guess you could say it was one of the toughest life lessons I have faced. It is a lesson though that has really changed how I view things and how I take on situations. Now that my children are getting older I want them to understands that words truly do have meaning no matter if you mean them or not, that actions can speak louder than words, and there are just somethings that can never be taken back.

Sean is almost 14 and about to enter high school. He has begged us for Facebook since last summer. We had a million and one reasons why we didn't want him to. However as the year dragged on more of his friends were getting it, he was showing maturity and responsibility and had his own email account I guess there was sort of the cave. Well not really a cave it just sort of happened on a fluke, which is a long story but in the end he was told that he would have to friend certain family members who don't post much and or wouldn't mind friending him. This would keep eyes on his world wide web adventures and alert us to anything that was not ok. So far a week into it I think we are doing alright.

Tonight at dinner, after a really chaotic evening, we got to discussing family. A week ago Sean had forgotten about Alex's death five years ago and was sort of still in shock by it. I thought he was joking and trying to be funny but he wasn't. He truly didn't recall that we had sat him down with his sisters a few days after his passing and told them what happened. We discussed that families love each other no matter what. He had overheard a conversations earlier and I guess he thought maybe I was done with my family. I explained we are never truly done with family until we are done on earth. They are family no matter what to us and we might not like what they do and say they are still our family and we love them.

He still wasn't getting it I guess in the teenage world if someone pissess you off they are no longer existent in your life. That can be said in our adult world also. So I used the absolute best example I could find and shared it with him. I shared it right there at our table at McDonald's and honestly at that point I didn't care who heard because it's a lesson for anyone to take home. I told him of our fight, I told him of our last time we saw each other, our last phone call. I told him how angry I was and how I said and posted things now I can NEVER take back. I told him I had no idea less than a month later he would be dead. I told him there was no going back and that even though he is family and I know had forgiven me there will never be the words spoke to me that says that. I would never want him to be in that situation. I would never want him to have to deal with that when it came to his family and even his friends. It's a horrible pain to have in your hear.

I was pretty proud that I could give that speech without a single tear. I wanted him to know I was speaking without my emotions taking control over me, I wanted him to see more of my hurt than sadness. I believe that our children read us and understand best when they hear things from us with our true words and not the heavy emotions that may be coming out. I believe that while yes he is still a young teenager that he was more than capable of handling that conversation. I want him to know how real life is getting now for him. I want to use as many real life experiences to convey this to him so he can see just how real it is. I know a time will come when all of his siblings will join the Facebook world and I want them to use it for good.

And while yes we can delete and remove things that doesn't mean in other ways they are not still there. Facebook has come a long ways since then. I know that you can go back now and see my words are gone but his are still there, I know that for anyone who saw his page that day saw what was said. Do they remember it? Who knows but it's that face that others have that ability. That is what I am now stressing to my children. This was a good lesson for me, even as an adult.

Sunday, March 9, 2014

Through his eyes

I am sitting on the couch of my livingroom with the front door opened. I am doing something I normally don't do but today I let go and let someone else take charge. H is in the front yard with his three older siblings and his dog. I would never do this not with his inability to understand danger and his lack of ability to grasp our tone of voice to alert to danger or scary situations. Today though with the pleading of his two older sisters I caved. I let someone else take him outside and be responsible for him while I sat in the house. I am keeping him in a visual at all times but he is entranced at the moment. 

Suddenly he is not compelled to run down the street or bolt from anyone. He is standing there on the porch engaged in a tube of bubbles with his sister. There is something about it, something about the interaction with this siblings that is different than the interactions with me or a teacher, he was engaged truly engaged in what Ella was doing with him. He wasn't looking for a distraction to make his break, he wasn't getting upset because she was distracting him from that break he wanted to make. What I saw at that moment was a boy and his sister sharing a true bond. I saw his hands flapping wildly, wide eyed anticipating the next big blow of bubbles to come. I saw a true calm come about him that I rarely ever see. He was relaxed in a way that he couldn't do when I tried to interact with him on that level. 

I could get upset and offended at this scene unfolding in front of me. I could feel hurt that he can't do that with me like he does with her. I could lose myself in all that negativity or I could embrace a moment that I don't get to see all that often. I sit and stare and feel my smile growing. I see a calm on his face that lets me know he has made a connection and he is embracing this moment just like I am. I wanted to run and snap a photo of this curious, quizzical moment. I always take pictures its my schtick. There is always a photo to remember almost every single moment. However I let him have this moment. I let him have it intruded moment with his sister. I can close my eyes and see that face, those hands reaching out to explore and seek out the bubbles coming at him. The eye contact he engaged in with Ella. Neither one knowing just how important that was. I did though and I smiled from the sidelines and had my own moment without intruding upon theirs. 

Sometimes these children open up when we least expect it. Sometimes they open up when they don't feel they are center stage spotlight and every moment is watched with an eagle eye. Ella was able to reach him on a level I have yet to reach him at. It was a carefree let's just be us and not world about the rest of the world around us. I have lost myself in their moment, basking in their laughter, their conversation, their true connection. The moment has now long passed and they have moved on to other things. I am still sitting here with that image smiling thinking of how all this happens, through his eyes. 

Tuesday, January 7, 2014

School is in, Food school that is!

Tonight we had our monthly Reach for a Difference meeting. This group is my family! They are my biggest supporters and have been there for me these last few months. I would be so lost without them. Tonight we had a guest speaker that I was so excited hear. Amy Gibbs is not only an Occupational Therapist at West Texas Rehab, she is also a friend of mine and she does amazing things for the children she works with. Tonight she was discussing Food Therapy and educating parents and educators on this up and coming therapy.
As I am sitting there reading the power point slides and listen to her speak I instantly start thinking of my darling 3 year old that has created his own guidelines for eating. Apparently he is just about the poster child for this class. I was asking questions at the end and all I have to do is call up our old OT and let them know we need  a reevaluation for food school. Who knew it would be so simple. I wish I would have thought of this sooner!
This would be a twelve week class that would be super intensive and very, very regimen and routine. This is what we need for H anyways so I think he will be quiet successful in this venture. The down side is there is of course, there is only one certified therapist at this point so the demand is high and the space is super limited. By Spring though there should be two more certified therapists so this makes me happy to know our wait time will be pretty short and with session starting every 12 weeks.
I am excited to make this call tomorrow to get the ball rolling. It's not that I am looking for more therapy but I am wanting to make sure that H is able to enjoy a fully rounded meal that he can enjoy and that is nourishing him. He is barely 30lbs and his diet is chicken nuggets, not chicken strips, bean burritos, easy to swallow foods like yogurt sticks, fruit pouches, and gummies but only certain ones. This therapy will teach him to think outside the box and help him open his mind up to more textures and foods. It will teach him its ok to get his hands dirty and that foods are allowed to touch.
I am so thrilled at these learning opportunities I am getting. The more I can learn the more I can help H and others around me who might not be aware of these things. I love being an advocate and being able to help others. This is definitely information worth passing on to others. I can't wait to get this all going and get H started in this program so that I can help him and hopefully use what he learned to help someone else!

Monday, January 6, 2014

Fear and Self Loathing

There comes a time in every mom's life that despite your best pep talk you just can't pull through it. You have to throw that pitty party and let yourself get down just a little bit. You begin to compare yourself to the mom next door and it just adds salt to the already painful wound you have begin. Inept, a total feeling of not being capable of doing your best and failing your family because you strive for perfection at every turn. At what point do you break the cycle and tell yourself you are just as good if not better as the mom next door? At what point are you ready to except yourself as the best as it can be?

I have been in a funk and realized my responsibilities are spiraling out of control. The laundry, the dishes, the house work, the home cooked meals all just sort of took a hiatus. It seemed like I honed in on any and every excuse to avoid the responsibilities I needed to do to be the best mom I can be. Can't reheat leftovers because the microwave caught fire Christmas Eve and I have been to lazy to get the replacement from a friend of mines house. Why not use the oven? Well ever since that stint of overcooked meals and setting off the smoke detector I have been a bit gun shy about giving the oven a whirl to see if the maintenance man actually fixed it, that and I recall my teenager saying the guy mentioned something about lowering the temp x amount to ensure that I was not over cooking but I have yet to get the official word on it. Laundry, I have pretty much just washed what I need for the week all in one load and let the rest of the stuff pile up. I have things from Thanksgiving I believe that still have yet to be hung up or possibly washed. Let's not even get started on the bedroom. Its the catch all now, you name it its made its way to any possible shelf or basket made available in my room. One might think a teenager took residence in here while my teenage son's room likes surprisingly organized.

I was about to leave the house tonight to go see Chris and I hopped on FB to see what I had missed. I came across a post on a page I am on about fearing CPS investigating because the biological mom to her step daughter decided to flip the investigation on her around to them and she wanted a checklist to ensure that she met CPS' standards. The responses to this was quiet an eye opener. I swear if this stuff was accurate I am screwed! My floors have not been moped in lord knows how long, laundry scattered all over, food is upstairs down stairs and anywhere in between ( H likes to take food and hide with it), dust covers a majority of the items however this is mostly in part because we live in West Texas and the wind and dirt blowing is insane! Stained carpets from the pets and the children, and the busted up door frame from a very angry child who thought it would be awesome to pull an Incredible Hulk stunt on my front door! I started thinking of what might happen had someone snuck a peek in my house. It made me shudder. Would my parental capabilities really come down to the overall appearance of my home?? What would they think when they see my three year old standing on the fridge with cereal bar laughing hysterically at his accomplishment?

It was at this point I realized it's time to snap out of this! I needed to sit down and devise a plan with my teenager and conquer this mess. I need to get over my laziness and put my inadequacies aside and take on this house head on. I can't and won't upkeep this home on my own. There is not enough time and energy for one person in this day to do so. If that is the case might as well call me Cinderella! My list making in my head was growing while I was driving and I had no possible way to jot it down. I figured that it was important and once home and settled for the evening it would all come back to me. Well here I am and I am drawing a blank on just what it was I wanted to accomplish and how. My motivation and drive stalled out.

When I was thinking about this I was thinking that my situation is far more different than Jane Doe down the street. Sure her husband is deployed and she has a son around the same age and she works, she also doesn't have the same situation by far that I do. She doesn't have a child who has special needs that is completely destructive and goes non stop, she doesn't work the hours I do and doesn't have the extras in the evening that I do. I tell myself I am doing good if I can get just the living room and kitchen clean in a three day span along with a load of laundry and dishes out of the sink. The kitchen table has three spaces cleared for eating while the rest of my essentials bogart the rest of the free space. My kids are happy, they are loved and are tended to. They might not shine and sparkle but by god they are fed, clothed and  provided for, I would have said bathed but H is still sort of hit and miss on the bathing thing. It's an act of god and a whole heck of a lot of bribing to get him in that shower. The rest however is done daily without a second thought.

Sean made a comment while at his dad and stepmom's house over the break. It was a Friday night and apparently the house was a party house. Sean said it was just like being back home and when asked why it's because mom or in this case step mom was doing it all. Making dinner, cleaning the house, and making sure everyone was tended to and happy. He said he was glad he wasn't a woman because apparently being a woman sucks. When she said that his dad works hard he said not nearly as hard as we do.  As I was feeling down tonight and that I just plain sucked at this job I thought about that and realized he is right. Our job does suck but we do it and we do it well so we should be proud. I probably would have felt even more proud coming home tonight to a clean downstairs and not a Thomas the Train ridden living room.

After dinner I started cleaning and without much coaxing and prompting my oldest joined in and started picking out all the junk that had collected over the course of a few days. It was a vast improvement, not a CPS, white clove improvement but an improvement none the less. I need to stop riding myself and being so dang critical of how things are going. My kids are so supportive and know I do my absolute very best. They are my biggest fans and supporters right now. I think parents of special needs children ride themselves just a little bit harder than those who have typical children. There is like a standard we feel we must reach to feel self worth and accomplished compared to those mom's. Like we have even more to prove because our children are already " less than perfect" so if our lives are "less than perfect" we are the reason our children are the way they are. I however believe each and every one of my children are the perfection that they should be. I don't let their imperfections dictate how, I myself as a mom, feel I am doing.

I will admit when I start going down the list of things: Child who climbs and hides, breaks the door frames because he is so out of hand, pours out beverages on the carpet just so he can stomp in it, the dog who barks incessantly because apparently we are not training her well, the pet stains our dog leaves because she thinks its a fun game for me to tend to while running late in the morning, the clothes all over the bedroom because H is out of control because of routine changes. It does start to bring me down. However I do realize I don't need to justify myself to anyone. If they want to question my abilities I would, in return like to challenge them to fill my shoes for a day and see if they can do any better. It's not to be snarky, but more of a see it's not so easy and I do the very best I can.

I think the new list of rules and responsibilities for all of us in the house will be a better way to hold not only my son accountable but myself also. Then we truly have a way to hold our self  accountable and not fear the things that make us feel so poorly about our self. Living in fear and hating yourself is not a way to be. We have to learn to be more proud of what we do and who we are and where we come from. Everyone has a different story. Some are more simple than others while others are so complex its mind blowing to figure out how they even get up and go every day.

I don't make New Years Resolutions but maybe a goal of mine for this year to to find the good in me and what I do instead of riding myself for the things I haven't done and have yet to accomplish. Maybe this will help me stay more focused and driven to become the parent, mom and person I want to be.

Sunday, January 5, 2014

Food Allergy you say?

It has been asked why I eliminate food dyes from H diet. After lots of reading and research I discovered that most children on the spectrum and with sensory disorders have a higher sensitivity to dyes especially red and blue. After eliminating those we saw huge improvements in H behavior and manageability.To help you understand just how sensitive he is to this..... today he found a a plastic candy cane filled with red and green Spree candies and that he couldn't get into his mouth fast enough.Yesterday he found a candy cane on the floor of the truck and quickly popped it in his mouth however I quickly snatched it out and earlier this week getting out pf the truck H found a tiny green M&M on the sear within an hour he was anxious aggressive and out of sorts. Anything and everything set him off. Also this week he got into a sucker that his sister accidently left out and he hid under his trampoline for a while munching away on it. 
It could take a few days for this to get out of his system and until then we just have to roll with it and wait for it to pass.We ( us and his doc) call it an allergy due to his reaction to it. There is no rash or anaphylaxis just severe behavior and mood effects. Some think it's hokey and excuse. I say until you experience it first hand don't judge. This has become something of a touchy subject for most. Those who don't understand tend to just think that us as parents are making excuses for our child. 
Just to sort of give you an idea of how much of a difference we see when he get into these things on a typical day H handles most transitions well, his behavior is not to severe and he can stay on task for short periods of time, aggression is lower and so is impulsivity. These last few days he has been climbing on anything and everything, anytime we go from one thing to another he gets wild and out of hand and takes several moments to calm down and get into the grove, he has been so aggressive to myself and others its been very painful. He just is all over the place and his tendency to be echolalic and recite scripted things is more noticeable. 
The next few days will be exhausting for me because it will take forever for  this to move from his system. Actually that is an exaggeration it will take a few days but it will seem like forever.  We will have to be as routine and structured as possible to avoid any further issues which is good because tomorrow we are back to our normal routine and that should help us when it comes to dealing with this. We must be very diligent with what comes into our home and what he comes in contact with. 
 Nothing he is unable to have will come into the house this means treats from friends, school and goodie bags from parties. If there is even a remote possibility of H getting to it we will politely turn it down. We worked so hard for the last year to stick to this and in a matter of a week its all gone to the way side. It is very frustrating and hopefully a week from now we can be back on track.
I generally now keep things in his bag that will be sufficient for him when going to various outings. If I know that the family is unaware of his allergy I find him a cupcake so he can at least have the sweet treat. I also know most parties include a candy filled goody bag so I make sure to find him his favorite cream soda dum dum suckers and some of his gummies so that he can enjoy that once the party ends. If I know pizza will be served I bring him chicken nuggets, we also have a tomato allergy and this one is an actual break out in a bad rash, allergy. I do what I can to make sure he is prepared and able to have as much fun and not feel left out. 
I would really encourage those who are prone to freely hand out food and treats to children to stop and ask the parent and double check to make sure its ok that the child has it. With food allergies and aversions becoming so prominent these days. Not just the food dyes but Gluten, dairy, nuts etc. I never hand over food until I get the ok from parents, when I plan parties or get togethers I always double check to make sure there are no specific allergies etc so that I can include that with our menu and plans so that everyone feels included. Nothing is more depressing to a child to show up at a party and not be able to have say the cake, or food even the beverage. If you aren't able to accommodate at least let the family know so they can plan accordingly.


Time flies

Yikes two months almost since an update. I had every intention of posting a holiday update but things have gone upside down. Our world suddenly changed in ways we had never thought possible. The last time I updated was the last time our family was together and seemingly whole. This update we are apart and broken. I did however manage to pull us through the holidays unscathed it seems so for now that is all that matters.

To list off all the changes as to make it easier I will do it this way:
1. On November 23rd Chris left for the hospital for PTSD treatment. It has been 40 plus days, lots of battles but the VA was finally able to get involved and hopefully by mid month he will be at a full fledged VA hospital here in Texas receiving the treatment he needs
2. Our beloved German Shepherd, B, had to be re homed to a wonderful family friend due to an issue with him and another dog. This issue has resulted in me paying a 600.00 vet bill and devastating my children on the loss of our beloved family family member.
3. We have tried to launch a CPS investigation for abuse towards H after finding hand print bruises on his rib cage and back of his thigh. Since this happened right at the holidays this has sort of stalled out so there is not much of an update to post at this time.
4. Twice in the month of December our house nearly caught fire due to cooking appliances. One due to the faulty stove display over cooking food by at least 100 degrees. The other was due to a frantic Hannah trying to make her brother oatmeal and forgetting the key ingredient (milk) and proceeding to cook the oatmeal for 2 minutes!
5. Two of our four Guinea Pigs died right before our eyes and it was heartbreaking to my daughters to see this happen. However the silver lining was they learned how important pet care and health is and have been very diligent with the GP since then.
6. We spent the holidays without Chris and survived, barely, but we made it. It might have been a nightmare for me but I think the kids enjoyed it and were just glad to be all together.
7. I started blogging about the things that have been going on with Chris. The other side of marriage, dealing with a spouse who has a psychological disorder due to his 14 years of service.  http://ptsdandmarriage.blogspot.com/ it is written with my own thoughts and emotions as we have navigated these new unchartered waters of getting help for his PTSD.

This has been our life for the past almost two months. It has indeed been action packed. Tomorrow we resume our normal schedule, the kids are back in school and extra curriculars are back in session. I have never been so excited to see a Monday in all my life! I can't wait to get those kids on the bus and just go back to how things were before the chaos of the holidays. The only part not normal is Chris is still gone. He will more than likely be gone until around March.

H has had a hard time adjusting to all the changes but he is doing better. We have had so many things he has had to deal with so I believe it is more than understandable that he struggle like he has, throw in a two week break from school and it just adds to it. We however found an amazing support team through all this and are so very thankful for each of them. While I pride myself on doing it all on my own I glad to know I have people I can always call on in a pinch. I can never thank them enough for all they have done. I am so honored to have such wonderful people in my life.