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!
Tuesday, January 7, 2014
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.
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.
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.
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.
Tuesday, November 19, 2013
When is it just to much?
I am always thankful for those who follow our story and support our mission to create awareness. Our goal from the get go was never to get pitty or to make others feel sorry for the cards we were dealt . In fact we hope to inspire and help other families above all. However sometimes our mission gets marred when others take advantage of support blogs/pages. It is sad but there are those out there that unprofessionally diagnose their child, create symptoms for diagnosis's that aren't really there and exaggerate and elaborate on details to get that huge "Oh you poor thing." factor. Those folks tend to put the rest of us in a negative light.
I never in my wildest dreams thought this journey of my last born would turn the way it has. While our start was a bit rough and a bit scary, again I really thought that would be the end of it. Minus our breathing issues. Autism and all that has come with it was the furthest from my mind. However I can recall one instance sitting in my class in my second semester of college when the thought of Autism came into my mind. A friend of mine, co worker, babysitter, had been talking to me about H and his struggles with speech etc. She had asked about Autism. I said if things didn't improve we would take that route but until then it was just delays due to premature. That was in the winter of 2012. Later that spring is when our lives started to change. Evaluations and testings in its early stages would start to reveal the delays that I was hoping were just in my head would not actually be factual.
Even with all that we started finding out, our mission was always clear in our head; AWARENESS, AWARENESS, AWARENESS!!! If H actually had Fragile X we wanted to be as informed about it to learn more and start spreading the word on creating awareness. However after two different genetic testings, despite his physical and developmental markers for the disorder, H did not have Fragile X. We still remain apart of the support page as we made some great friends and learned a whole lot about it all. Then we heard the words Autism and Sensory Processing. We went into it with caution and research, we had already been through the stress of one disorder so until we knew without a doubt we kept cautious of what we were dealing with.
Once we we knew what H was dealing with of course our mission was clear. Spread the word, raise awareness and do anything and everything we could to help him. Let me make this clear we didn't/don't want pitty. We want to help him and our other friends we have met along the way be the most successful they can be. I won't embellish details, put things in that aren't there, be deceitful to gain services we wouldn't otherwise qualify for. Sadly we have come across these types of people and it is sad because essentially they are taking away from the other families that aren't able to because the time and therapists are being taken up by those who really don't need it.
I know as a parent we want to do what ever we can to get our child all the need to succeed however when is enough, enough? When is to much, to much? When is it considered overboard? I have encountered families that have actually lied to get more for their children to create things that aren't really happening to get more out of therapies and out of people. Some would ask "What type of person wants something to be wrong with their child?" " What could one possibly get out all this needy deceitful antics?" At first I am sure they get what they want and then as time goes on hopefully those around them start to see the truth and realize some people are in this for the attention apparently there is some sort of glamour in the disability world.
I ask those who follow our story to know that what I post is 100% accurate and true. I share the good, the bad, the ugly and of course the unexpected. I try to give a good balance so that the real picture is shown. Autism is not the end of the world, in fact it is the start of a new one for us. Autism has opened our eyes to so many things and in a way we are grateful to this. Its taught us to slow down more and appreciate things we wouldn't have in the past. We have learned to see things in a whole new light.
Autism isn't always this downer and horrible things. There are some wonderful moments we have encountered. I encourage those who follow pages like mine to be leary of those who constantly post the downs, the whoa is me posts, the things that just seem off. There are just some people out there who want some form of attention and its not about their child its about them. Of course most of those who follow support pages like mine aren't familiar about the diagnosis. Utilize that as a time to learn on your own what it is to form more educated thoughts and opinions. Ask questions to the people you follow. You can learn a lot about the people you follow by asking the straight forward direct questions without coming off confrontational and rude. Do this especially if you plan to give monetary donations and such. I would hate to see that someone got scammed. In the past when we have been provided monetary donations we sent proof of purchase to those who donated so they could see it was put to good use then when we were able to show pictures of H utilizing what ever it is we might have purchased with donations.
I know this is not the typical post I share but after some recent situations and information I have been seeing I feel this is important especially with that holiday season upon us and people are feeling more inclined to give and reach out. Speak up of things seem off. I know that there is a person I have encountered on this journey that has pushed the limits and made others scratch their heads in wonderment. It has really taught me how to read people and situations more so that I can make a more informed decision on who to support and follow ourselves on this journey.
Friday, November 8, 2013
Don't be sorry....
"I am so sorry", " I don't know how you can do it."," You must be a very strong person.", "Do you ever just wish it was different?" As a special need parent these are some of the most common things we hear. They are usually from well meaning individuals, family, friends and strangers alike. While I realize they probably mean no harm in their statements it just becomes unnecessary and awkward.
We aren't sorry for the child we were given. We do it because we are the parents, it is our job our duty our RESPONSIBILITY. We do this the same way would we would raise a typical developing child. I don't feel I am any stronger than the next parent to do what I do. I think or I would like to think that any other parent in our place would do it, I know however in reality this is not the case but I always believe that this is how it should be. Never, ever ever do I wish this was different for us. This is how it was suppose to be so why would I want to change it. There are days that it gets to me but then again I think regardless of what my child is diagnosed with I am sure I would wish the that things were different. However this is how my child is, this is who are family is, this is what our lives are now. Nope no need to change it.
My mom called tonight. We speak once a month or every six weeks. Gasp and tell me what a bad daughter I am but I have my reasons and do not need a lecture on how I am a cruel daughter for my estranged relationship with her. Anyways she had just had a friend over with her 6 year old Autistic son. Gathering from the tone of voice and the call he has to be much more severe than my child. She hasn't seen H since he was a newborn so she really has nothing to base anything off of unless my family has mentioned his behaviors and diagnosis to her. She proceeds to say how sorry she is over and over. I reassure her I am fine and that really its going to be ok. At this point I feel awkward because she honestly has no idea what we endure day in and day out.
After she tells me about the visit I have to start the explanation that he is a lower functioning Autistic. I only assume this from the behaviors and the lack of potty training etc. My mom was baffled that I knew so much about this child I had not met. Hmmm lets see everything she described, my own personal knowledge and now training in I think I have it covered. She seemed so amazed by it. She still actually has no idea what our daily life entails she just thinks she does because of a visit from her friend today.
She asked all sorts of typical questions that we get from people who don't know us well or have no idea the variations of this spectrum disorder. My mom is old school and not hardly capable of using a computer let a long a smart phone so her knowledge base on Autism is very outdated and very Rainman esque. I explained his quirks as you will and she seems to be grasping more that my child is nothing like the 6 yr old who was at her home today.
Once I finally got my mom to actually listen to what was being said she started to grasp what we deal with on a daily basis. I told her you meet one Autistic child you have met ONE Autistic child. I said while yes these two share similar quirks and such that they are both on opposite ends of the spectrum. Regardless it is a social disability that effects social skills, cognitive and some motor skills. Again since she has not seen H since he was a newborn really has no idea what he is like. She kept wanting to talk on the phone with him and I had to explain this was not going to happen as he has no face to put with the person and will not answer her questions unless they are his desired topic, she finally understood this.
After she and I ended our conversation, H was running around outside of our destination climbing and getting very excited, I really started thinking more about her call. I know she was prompted to call because of her encounter today. I can only assume she felt genuine concern of us because of what her friend endures on a daily basis. I know she wants for this relationship with him and myself. I however am not sure I am ready for it. I don't want the relationship out of pitty and feeling sorry for us. We get along just fine and I don't need her to give the tone of the "oh woe is me" to all of it. We are not dwelling on this at all. We embrace it and claim it as our normal life. I never want H to think we should dwell on this or that its his fault at all.
So please if you ever encounter a family who has a child with a disability don't pitty them, feel sorry for them or make them think their life should be different. Help them embrace it, encourage and support them. This was the hand they were dealt and they are making the absolute most of it so you should also.
Tuesday, November 5, 2013
It could happen to you...
Since the start of the year it has been filled with up's and down's. More so than any other year I can ever recall. This says a lot because I have gone through a lot in my adult years but this one sure is one for the records. While it has not been the picture of perfection it has given us a lot to be thankful for and a lot to learn from.
At the start of the summer life had become tough, so tough we had no idea where we were going to end up and what was going to happen. Good people, LOTS of good people were looking out for us and helped pull us through that very tough time. Thankfully those tough times have been put behind us and we move forward once again. Those tough times however brought to light things we needed to focus on and helped us realize what we need to do make sure that we don't encounter this again.
With that said this year has been full of pleasant surprises and lots of good news. In March I was nominated for employee of the quarter not only for my center but for my squadron, group and the overall base. I ended up receiving that in each category. I have been told this puts me in the running for employee of the year for my category which would be even more awesome. In April we were granted money to obtain several things for H. We got his riding covered along with much needed therapy items. H also got into the PPCD program at Head Start which we were very thrilled about because we knew he needed extra help and this was exactly what we had hoped he would get. Just recently I took on a lead preschool teaching role and I have been so excited about the opportunities it has given me.
I think however the icing on the cake for all of this was the phone call I received this morning. I generally put my phone on airplane mode when I am at work to preserve the battery. As I flipped my phone back into working mode I noticed a VM. I assumed it was Sean's school notifying me of the schedule change etc. However it was a lady from KTXS tv station here in Abilene. I at first thought this was in reference with stuff I am doing with TLC so I just sort of backed out of my parking spot and proceeded to get my lunch. However as I continued to list I realized this was not exactly about TLC this was about ME!
It turns out someone, possibly my husband, nominated me for WTU Electric volunteer of the year award. I am now one of the five finalists. They talked about my work with TLC, Reach and my own group The Spectrum Connection. How I work full time, go to school and have my own special needs child and give my time to help those in the community all at the same time. I started crying and shaking. I had never before ever been nominated or considered for something like this so to be a finalist to me is HUGE!
I spoke to KTXS this evening and we discussed a tentative plan for next week. They want to come out to TLC see what we do, meet my family and see what it is I do. So I will know by Thursday what exactly will be going on. This segment will air a few times till the winner is announced. They will have all of us on sharing our story. I have no idea if this is a voting process or what but still I just feel honored to be top 5 right now.
So what do I get if I win you might ask? I personally get nothing. The Legacy Complex will get a very much needed $5,000 award. That to me is enough of a prize so I am perfectly ok with that! TLC has done so much for our community I am excited to know that they very well could be given this award me.
So now that I am starting to come down from this amazing high I need to start focusing and thinking about what I am going to do next. I want this to be the most amazing interview that captures everything that I think matters to myself and my family. I want to make sure our special needs community is given the recognition it needs. This is something I don't think in a million years I could have ever dreamed could happen so for now I am just going to relish in this moment!
At the start of the summer life had become tough, so tough we had no idea where we were going to end up and what was going to happen. Good people, LOTS of good people were looking out for us and helped pull us through that very tough time. Thankfully those tough times have been put behind us and we move forward once again. Those tough times however brought to light things we needed to focus on and helped us realize what we need to do make sure that we don't encounter this again.
With that said this year has been full of pleasant surprises and lots of good news. In March I was nominated for employee of the quarter not only for my center but for my squadron, group and the overall base. I ended up receiving that in each category. I have been told this puts me in the running for employee of the year for my category which would be even more awesome. In April we were granted money to obtain several things for H. We got his riding covered along with much needed therapy items. H also got into the PPCD program at Head Start which we were very thrilled about because we knew he needed extra help and this was exactly what we had hoped he would get. Just recently I took on a lead preschool teaching role and I have been so excited about the opportunities it has given me.
I think however the icing on the cake for all of this was the phone call I received this morning. I generally put my phone on airplane mode when I am at work to preserve the battery. As I flipped my phone back into working mode I noticed a VM. I assumed it was Sean's school notifying me of the schedule change etc. However it was a lady from KTXS tv station here in Abilene. I at first thought this was in reference with stuff I am doing with TLC so I just sort of backed out of my parking spot and proceeded to get my lunch. However as I continued to list I realized this was not exactly about TLC this was about ME!
It turns out someone, possibly my husband, nominated me for WTU Electric volunteer of the year award. I am now one of the five finalists. They talked about my work with TLC, Reach and my own group The Spectrum Connection. How I work full time, go to school and have my own special needs child and give my time to help those in the community all at the same time. I started crying and shaking. I had never before ever been nominated or considered for something like this so to be a finalist to me is HUGE!
I spoke to KTXS this evening and we discussed a tentative plan for next week. They want to come out to TLC see what we do, meet my family and see what it is I do. So I will know by Thursday what exactly will be going on. This segment will air a few times till the winner is announced. They will have all of us on sharing our story. I have no idea if this is a voting process or what but still I just feel honored to be top 5 right now.
So what do I get if I win you might ask? I personally get nothing. The Legacy Complex will get a very much needed $5,000 award. That to me is enough of a prize so I am perfectly ok with that! TLC has done so much for our community I am excited to know that they very well could be given this award me.
So now that I am starting to come down from this amazing high I need to start focusing and thinking about what I am going to do next. I want this to be the most amazing interview that captures everything that I think matters to myself and my family. I want to make sure our special needs community is given the recognition it needs. This is something I don't think in a million years I could have ever dreamed could happen so for now I am just going to relish in this moment!
Subscribe to:
Posts (Atom)