Monday, December 31, 2012

Out with old in with the new!

Well this is it. The last day of 2012. Honestly it does not feel that 365 days have passed but they have. I recall thinking just last week that this was impossible to be preparing for Christmas and now here we sit about to embrace the new year that is suddenly upon us. Why is it when we are children the years seem to just DRAG by? I mean everything just seems to take forever and we never seem to appreciate that time we have? Then we become adults and if we blink just right the entire year went by and we missed most of it! I can't tell you how much I have tried to instill in my children that they need to enjoy this time they have take in every second of what they are experiencing because before they know it they will be saying the exact same things as I am.
This year has been one of our most eventful ones as of yet. This was the first full year that Chris was no longer military. This transition in and of itself was a tough one. I began a wonderful job doing what I love, but that was still such a huge change from what I am used to. We both became full time students and have found it to be a challenge but have found such reward from it. Life has continued to throw us curve balls but we seem to be hitting them left and right, some right out of the ballpark others have ended up base hits or fouls but we have done our best to overcome each obstacle in our path. 
This next year will prove to be our toughest yet. This is not meant in a negative manner we just know going into 2013 we will have a lot more to face and in store for us. This upcoming year will be the year of answers. We will be starting off this New Year with answers to H and that itself is scary and a relief! We have big things on the agenda and hope to see them through. It will be exciting though. Sean will be in his last year of jr. high and Hannah in her last year of elementary school. See time is flying and I am just feeling like i can't keep up!
i won't be making any resolutions this year. They just seem to have no point to me. This year we are going to live for the moment and be happy for what we have and who we are. I am not going to stress over my weight, or how to look better. This is me and I am good with that. We aren't going to let anyone bring us down and remove those who bring nothing but negativity to our lives. This year we will make the most of it and do what we can to savor and enjoy each day we get. I am wanting to do what I can to "slow down" time   so I don't sit here a year from now and say "Man where did the time go?"  
This year is going to be more about family and less about the stress. I want to spend more time with my children, my sisters and the rest of my family. I want to do more with them and create new memories and traditions with them. It sounds like a busy year but hey I have 365 days to complete it so I think I can do it. I think it's time to change my outlook on life and  think about more of what I have and want to have rather then what I don't have or never got. So out with the old and in with the new! Happy New Years everyone!

Tuesday, December 25, 2012

So this is Christmas

Who else agrees we needed a bit more time to prepare for Christmas this year????  I am sitting here at a quarter to 6 in the evening and thinking really this was Christmas. The girls slept in till after 7am and H was up close to 8. Granted he was up late since he is not feeling well and he was also pretty anxious and trying to stim around the living room till midnight. The kids waited patiently to open gifts and have played well most of the day. God bless the creator of Legos! That is all they have done. I haven't heard a peep except for a few clomps down the stairs for some snacks or a drink.
We left around 11am to go pick up Sean at our designated half way mark. Of course what Christmas day roadtrip would not be complete with out a little winter weather. After a quick phone call to his step mom we agreed to go ahead that nothing seemed to be sticking. We get home opened the remainder of the gifts cooked a little and have relaxed. The kids kept to themselves and H floated between being with his siblings or being down here with his toys or watching TV.
Between the drive and sitting here I really started thinking about this Christmas compared to all the past ones. How many variances there was compared to the previous. There was so much more hoopla and excitement in the past. The house would be decked out and the tree covered in nice ornaments, the house was always full of guests and friends for parties and just random gatherings, going to parties and spending lots of time out of the house. This year we went to holiday parties but they were therapy related so of course those went fairly smooth. We had a few events on the books it just never panned out which is fine.
I started thinking on Thursday how we needed just a few more days between then and today because I was not ready for Christmas and I just didn't feel in the holiday spirit. I was hoping as the days drew closer to Christmas i would feel more prepared and ready for it but nothing. Sunday we picked up girls and I though surely this would get me in the spirit and boy did I try. We made ornaments, and paper chains, and listened to Christmas music. I was fighting to find that spirit I was lacking. Yesterday after a few errands I decided to get with the girls and bake some treats for our friends and family. I was getting closer but still really nothing. We dropped off the goodies and took a walk around the cul de sac to look at lights and ended up meeting some great new neighbors. I made a mental note to go walking down to that part of the neighborhood not only to mooch the fire pit and some good girl talk.
Last night the girls went to bed without a fuss and I got to playing Santa. Thank goodness nothing required assembly! Shortly after midnight the tree was set and I went to bed. I was sure the girls would be up with the sun begging to go see their gifts. We were up before them and just laid quietly to see how long it would take before we could bust one of them sneaking off downstairs to check out the goods. I have to admit I am a bit disappointed in not being to catch them in the act. The agreement was they opened one gift from us, one gift from Aunt Jordan and Jenny and their stocking and wait for the rest later. They complied without issue which was nice. I thought for sure with the snow we would see a bit more Christmas spirit and I would feel that it should be Christmas.
I have sat here trying to figure it out and I can't explain it. So this was our Christmas. I really want to spend it with family next year and by family I mean extended family. Now that Jordan and Ronnie have a baby I think it would nice to do more of a real big family thing like we did growing up. I am so hooked on that. I guess maybe I should let it go but I just can't. I know we kept it low key to make it easier on H and it was for the most part. I can't keep him sheltered and the more he is exposed the better training it is for him. Even just the little bit of extra stimulation tonight has caused him to go nuts. No light switch is safe, no block will go untossed, and no non food item will be missed. While it is hard to watch at the same time this is H and we love him and understand this is all part of it. So this was Christmas and what a great Christmas it was.

Tuesday, September 18, 2012

Quirks

I was sitting today thinking about all the funny quirky things my kids do. Each is what makes them different an unique. I embrace each one as the individual that they are. The love they exude is just amazing.  I know I talk a lot about H but really all my children are of course so very special to me and my life would not be complete.

Not long ago I was accused of favoring H and abandoning my others. I shouldn't have taken those rude things to heart because I know along with my family it is not the case. I have such an amazing support system they would stand by me and help me if I was falling.

Every little thing my kids do make them special and stand out. Sean loves to keep us laughing. Just recently he decided to speak in a English accent. He did it so perfectly.He is innovative and creative. I swear he will be an engineer or something along those lines one day.  He is so smart and insightful. I know he has his moments but still they are moments that one day I will look back on and surly miss! Hannah is a pleaser and is very hard on herself. She has worked very hard these last few years to overcome a lot of obstacles and refuses to back down. While we know she is embarking on those pre teen years I know that her love and nurture will always be there. She is the little mom of our family. She looks after Emily, Daniel and H. Her maturity when it comes to them is just amazing. Ella is our drama queen. She lives up to the stereo type of being a "red head"! She is hardheaded and full fight. She was my baby for a long time and still lives of to the role of youngest but also totally fits the part of middle child. No one will ever take advantage of her because they will be afraid of her wrath lol!!

I love how completely different my kids are. They bring so much to this family that I am proud of. They have accepted their little brother as one of their own despite is many needs. Our family has raised some good kids some accepting kids at that. They make us proud every day.

I guess I should add some new and funny quirks I have noticed with H. He now hate the National Anthem and will dissolve into a puddle once he hears it! He can spout out several phrases now whether or not they apply to a given situation does not matter to me he still is saying them! Tonight he wanted to eat on the couch after 10 minutes of fighting and food throwing he walked back from the kitchen placed his food on the table and climbed up on the couch. He has to learn the hard way! If that means breaking a lamp and almost clearing my Scentsy warmer off the end table so be it! For the things that he has lost the ability to do he has gained new things.

These are the moments that make me miss my kids the most. I know though one day we are going to be in one city and under one roof.

Saturday, September 1, 2012

Yellow

Today's blog is brought to you by the color yellow! This morning has been all about the word yellow. EVERYTHING is YELLOW! I think it is pretty funny because he was on the phone with my sister and she would say something and the response was yellow. I walked into the kitchen asked if he wanted some milk and his response was "yellow". He climbed up on top of his cozy cab and turned the light and fan off and on shrieking "yellow", "yellow", "yellow"! I just got up and realized he also reset our thermostat and daddy would be proud he had it set for 85 in here!

I am glad I can sit and laugh at his quirks. I know some days it brings me down but lately especially today the make me laugh. With him having Echolalia he will just randomly throw out phrases or words that he has heard at some point. Sometimes they just come out of no where. Even though he won't often answer me or if he does it is something that makes no sense or out of left field I ask him because he has to work on learning the give and take of conversation.

I can ask him what he wants to do today and his off the wall response makes me smile. I said lets go play legos and he says "Yellow momma" I gather up all the yellow legos and show him that yellow actually has a meaning besides being his favorite thing to say over and over. I get the yellow balls we throw them in his ball pit and let him know that those balls are yellow. Every day and everything is a learning experience for us now. Good thing that degree of mine is in early childhood education. I was beginning to think it might go to waste ha ha!

Some people don't understand why I say he is non verbal. I say that only because 9 out of 10 times if he was asked a question he would either babble an answer, respond with something that was irreverent and on that 10th time he would say or respond with an appropriate response. I mean unless you folks want to qualify him as verbal when he says his name is Schatzie or of course Yellow. Seeing has he does not know his name or who he is maybe I could switch his name to Yellow. Yellow Tyler Thomas!

I do love that he has Echolalia it gives me hope for speech later on. I love hearing his voice even if that means I have to hear yellow or egg and of course momma over and over and over. Oh ya right now everything is EGG! I pulled out the eggs however to make him some and he of course he doesn't acutally want the the eggs. I mean of course what sense would that make! So every time I go in the kitchen he tells me egg.

Well it's time for Mr. Yellow and Mr. Egg to head off for a nap. Maybe he will come up with some new words when he wakes up. Maybe he will wake up in a better mood. Talk about crabby pants. I gave him a pb cookie so hopefully that perks him up. Don't judge at least the kid is eating!

Wednesday, August 29, 2012

Fragile. Handle with....

So happy birthday little guy. Today your turned 2 years old. Today is a birthday we probably won't forget because it was pretty memorable. I should be up for mother of the year after scheduling this apt today! Thankfully he is 2 and probably won't remember this so I guess I am off the hook for now when it comes to being the root of my son's evil when he ends up on a therapists couch years from now because he is all screwed up ha ha ha!

Today we headed to Lubbock to meet with a Pediatric Behavioral Specialist regarding the problems H has been having. Honestly by the time we got to the doctors office part of me wanted to turn around and go home because I felt that he was fine and I was losing my mind it was all in my head. I figured Chris would kill me for saying lets go home so I sat waiting patiently for the doctor to come see us. I swear it was forever before she came in but it was only about 10 minutes efore she was in and got to work.

We discussed all of the notes I came with. She appreciated how thorough we have been when it comes to tracking everything. I guess it has made it easier to come up with a diagnosis and such for him. I have never seen him take to a new person like he took to her. She let him climb all over her and play with all her neat doctor stuff. He ended up taking the stethoscope to his head and leaving a nice bruise! She was calm and gentle letting him explore each item before using it to put him more at ease. Her bedside manner with him was fantastic.

She said something to us that hit me like a rock "You have a very special boy who really has me baffled" Great we stumped the specialist! Actually she had just never seen it present itself in this way before. She said Fragile X. I looked at her and looked at Chris. I had seen it but not read about it because I was completely focused on the Spectrum and nothing else. H has A LOT of characteristics. He also displays A LOT of ASD also. With that we were told to go over to the hospital to get blood work done for some genetic testing and to confirm her diagnosis. As soon as we got in the car I pulled up Fragile X. What I read astounded me. My son minus 2 things fit the bill perfectly for this disorder. I began to cry. How did I miss this? Why didn't I think of that? When I read Fragile X in other spectrum articles I over looked it because of the name. I figured it had to do with something that was way out in left field.

Fragile X -http://www.fraxa.org/symptoms.aspx  H does not have the low muscle tone and long face but everything else fits. A simple DNA test ( 8 vials of blood later) to rule it out. She is pretty convinced this is it. Until the test results come back we will stay on our course of therapy and then add to it once we hear back. We go back in January for another apt to see were we are at. At this time he will almost be 2.5 and she said it would be very clear cut how severe of a disability we are looking at.

After all this mind blowing information we put it off to the side and focused on H's birthday. We went to lunch and took him to the mall, which was nice and big and just let him go. He enjoyed it. We are heading home now to spend the rest of the evening by the pool. We are going to spend the rest of our evening focusing our on our son not our diagnosis. This won't define my child it will only  be an answer to the means of helping him. Happy birthday sweet boy. We love you so much

Monday, August 20, 2012

"It could be worse".....

I know it has been almost a month since my last entry. I started to come up with a few entries and then just got caught up in life. There has not been to much to report and what I do have to say I usually just put on H's Facebook page. I do have to say I am pretty impressed to over 100 people are following our page and that a lot of them are people whom we do not even know and found our page through friends etc. While right now that page is simply a means to not bombard my news feed with updates etc of H depending on the outcome of our next apt it might be used as a means to get the word out on fundraising. Here is the link to his page. https://www.facebook.com/HopeforH

 Why might you ask would we be fundraising. For a few reasons. One of which most of his therapy, testing and appointments are not covered by our insurance. If it is required that we would need more types of therapy, more therapy sessions etc we would have to find ways to cover the costs of them. There is also special things H needs for therapy reasons and some of which are just to much for us to cover out of pocket at this time. Lastly we keep tossing in the idea of a service dog.  This would be trained to search and protect H. It would keep him from getting out of our house but if he did this dog would be able to track him. It would be used as a means of comfort when he is feeling overwhelmed and keep him safe at night. Such as if he would wake up and wander from his room etc the dog would alert us and the dog would also try to apply pressure to help him find comfort and go back to sleep. This is amazing piece of mind but comes with a giant price tag!

As some of you have read on H's page and my personal page it has been a tricky few weeks in our home. I used to always tell myself "It could always be worse" I did it as a way to psych myself to think that things are not as bad as they seem. Not long ago I stopped saying that because it seemed every time I uttered those words it would get worse. I have taken that line out of my daily use and now think of it as an insult in a way. When people I know say it to me I want to lash out and say "Really do you think so? Please tell me how it could be worse? Tell me how much more do you think myself and this family have to take before we can say ok it's worse game over?!" Trade places with me walk a mile and tell me if you still feel that "It could be worse!"

The events of last week have still got me scared and depressed. My child got out of this house and wandered about at night. My child has almost set this house on fire twice, my child has found ways to make a seemingly safe home feel like the most unsafe place for him to be. It hurts to know that my child is not safe in our own home. That even thought I covered outlets, locked cabinets, lock up chemicals, don't light candles, baby gates on the top and bottom stair, use window screens etc it is not enough. H can break off those plastic cabinet locks if he yanks just right, he is starting to pull out the outlet covers, he can open our 3 step baby gate almost as well as an adult, he can move a chair to our front door move our dead bolt and turn the knob and walk out of our home. I am hoping to come into a small fortune soon because this how will make Fort Knox look like childs play! Our landlord is coming tomorrow to help us see what locks, alarms and sensors we can have them install for us. I have been given a few good sites to find industrial strength baby proofing items for all the other stuff. For now he resides in our bedroom with his bed in our room until I know without a doubt in my mind he is safe and we are safe.

Most parents at this stage of parenting are more concerned about the commonly known terrible 2's I have recalled to memory more and more lately a conversation with our old pediatrician on base right after H had turned 1. H was in the room waiting for his check up writhing on the floor arching his back screaming and yelling and she walks in looks down at him looks up at me and with a sympathetic smile said " Sorry looks like the terrible 2's came a year early for you" So while most of my friends have kids about to turn 2 and they deal with this I have been doing it for a year already and for now there is not light at the end of my tunnel. I swear with each passing day it gets a bit more dark and a bit longer.

I can say though that some good has come about lately. We recently acquired and iPad for H. This is his means of communication, helping with problem solving, hand eye coordination and learning to use ASL. So typically children at the age of two have an enormous vocabulary with the ability to say 2 and 3 word possibly 4 word sentences. H can do that but not verbally. He is now able to have a 2-4 word signing conversation. He can ask us for milk in a cup please, and thank you, he can ask for help, all sorts of things and understand when we sign to him instructions and directions. A small part of our communication barrier is crumbling down and it gives me hope. He is so independent however he can go to the fridge pull out a container of milk bring us a cup and tell us with those actions what he needs, or bring us a diaper and take off his wet one.

Answers is all I want. Not a pep talk to make me feel better. I hope next week can give us that or provide us with a clearer direction of where to go and what we are dealing with. That is all we want.



Tuesday, July 31, 2012

Breaking down the walls

My mind is full of thoughts but this page just remains empty. These last few days have been full of learning. I was gung ho on pushing the limits and exposing H and making him learn how to handle all these intense situations. I figure if I push and push he will learn to adapt and the won't be so bad. After talking to a friend who put it to me in terms that got on H's level it made more sense. 
Saturday we went to a friends fundraising garage sale. Their son has severe Autism and they will be heading to Ohio in March to start training with their service dog. The garage sale was outside so our attendance was short lived. The noise, the heat and of course the stimulation was to much for him. It is nice to have friends who completely understand our quick exit. 
We headed to the roller rink but not before a quick stop at the book store. H did something that impressed me. There on the sign was 4 pictures and one was a game controller and he looked at it and said "Sean"! I was excited he made the correlation that his big brother plays video games, only now though he sees the controller and calls them all Sean. There ya go big brother you have played so many video games you have become the controller to your little brother! Once inside the store he was in his total happy place. I am sure we could stay there for hours and hours and it not phase him. I had to drag him out. I love that he loves books and hope this love continues to grow and grow.
The roller rink was just a place that I should have avoided after our last encounter at the one in Dallas. The only difference was they didn't charge me or H even though he got skates. Have to give them props for that. Not so much a huge fan of the two teens behind the counter making comments as H had a meltdown as we tried to put on the skates or while people whizzed by him on their skates. H made several attempts to bolt but never got to far thankfully. He finally mellowed out and was dancing when they played the hokey pokey but after that the lights went out the strobe lights went on and the music went up. He lost it. He ran to the door screaming go go go go go. Thankfully I caught him in time. We tried to stay so the girls could have a snack but it was just time to go. 
After this outing I realized this was not getting me anywhere. Outings will be done now on a as needed basis. This is not fair to him to freak out and be tortured so to speak. The rest of the weekend we remained at home. We had planned on a party Sunday but figured this would be no fun for any of us if he had been struggling like he had. We are going to try a swim party Saturday. He loves outdoors so maybe this will be a bit more relaxed for him. 
We were fortunate enough to come into a iPad for the sole use of H for therapy purposes. So far he loves it and I have found some great apps to on there that will help him and us. We have loaded a tracker to track his days, his progress and other things throughout his day. His therapists are gong to help us get apps for it so that we can help him even more. We have loaded a talk to speak app that will hopefully help him communicate his needs when we can't figure out what he is wanting, PECS or Picture Exchange Communication System so that he can use pictures to express needs and also learn more words, speech apps that will as him to repeat things this app however might serve no point right now since he is not in the mode of repeating what he is asked to say. He like to do it on his terms when he feels like it even if it does not meet the current situation. For example today Chris was talking about being at school at 8am and suddenly from the back seat H pipes up and says "8,9" I had no idea he had a concept of number sequencing but he has heard it and absorbed it. 
H started his new classroom today. We agreed that even though I was registering him for Early Head Start moving him up might be a good idea. Today seemed to go well despite his major meltdown at drop off. He did not interact with the other children he just sort of mingled and scoped out what they were doing. No biting so we will take that right?! I love his teachers. They want to know everything they can do for him, how to help him and what works and what does not. We are setting up a conference to go over all his needs. It is making me feel so much better about the whole transition. So even if H does not get a spot at Early Head Start I know he will be in good hands. I will miss Carol and Kellie they loved him so much and I can never thank them for all the hard work they put into my baby boy. I am just glad they are across the hall so I can see them all the time still!
Therapy we good today. We had ECI and WTRC. ECI said he was doing great in his new room. She is off the next two weeks so we will see how far he comes and what we need to work on once she is back. WTRC was not to bad. OT was not to productive due to the meltdowns and bolting. This was our first session so I knew no miracles would be performed but it was still frustrating to see him so unhappy. Speech was great. I really love our therapist. We had a great talk today and she was honest and blunt. We need to be happy with the speech H does have, celebrate the 2 word sentences he can say, and not lose hope when he loses words, won't repeat and struggles with words he once knew. She told me the more we get down and work with him while he is engaged in activities the better chance we stand to get him to learn words and use them in the right context instead of just at random times.She told us that even when he does use words at random times and out of context acknowledge and repeat and praise. I felt knocked down but I knew we are not out. We are going to fight for H we want him to know he has a big team behind him supporting him to make him know he is not alone. He is going to break down those walls, go through all those barriers and prove everyone wrong. He is a fighter like that!

Wednesday, July 25, 2012

Shoe on the other foot

With all that is been going on in our lives now I really try to not get all judgmental on parents ability to parent and that not all children are just bratty out of control monsters. I think sometimes I over analyze children I come across now and think that something must be wrong. I have sort of gone the other way and over compensate so I don't feel guilty if in fact there is some underlying problems with a child.
I have been blessed with an amazing job and not many can say they love what they do. Granted there are days I question if I am good enough and why I could be around children that make me want to pull my hair out sometimes but I love it because the good far out weighs the bad. I do it because I want to make a difference and share my love and knowledge.
Given our current situation with H I try to approach challenging situations in a different light. I try to be more sympathetic and understanding without letting my emotions and feelings mar the big picture. I won't ever let a child use a disability as an excuse to misbehave or get away with what they want but I will understand that sometimes behavioral issues are beyond their control sometimes. It is my job as a teacher to utilize all my resources and not ever give up on a child. I refuse to give up!
A situation I encountered today was about typical but then again not so much. A lot of the kids have parents coming home from 4-6 month deployments. Their lives once again are about to be flipped upside down. When kids have special needs this is even harder for them to handle. Some kids however are just oblivious to it and it won't hit them until the moment they see that parent that has been gone. This child today clearly knew a big change was coming and sadly he had no clue how to handle himself.
We did what we could as the teachers in the room to help him. I was fed up and ready for him to head home by the end of the day. We often believe it is careless parenting and lack of trying that leads to this  sort of exacerbation from us teachers but sometimes you have to look at it from their perspective. What is their home life really like, where are these parents coming from, what is if any their support system?
Suddenly it took me looking into a parents eyes today to really change my thinking. A mother came in with tears in her eyes and was so upset with her child who had not had a stellar day. I could feel this tugging at me more and more because I have been there I knew exactly how she felt. She looked at me and her tears started flowing. She said she didn't know what to do and that he really isn't a bad child and he is often a sweet boy. I had to fight my own emotions because I swear it was me in this mothers  body. All the months of struggling with H are being relived through this mother at this very moment.
I did something I hardly see teachers do anymore. I looked her in the eyes gave her the most sympathetic smile and touched her arm gently and said " it is ok, he will be ok, we will get through this together as a team. We are not giving up on him."
Despite her child demanding the attention of mom by doing what he could she looked at me and smiled and told me thank you and appreciated it. I could see the exhaustion in her face and the look of defeat. I can't tell you how many days I have left with H feeling the same way. I hate that my child ever puts his teachers through this but I also realize a lot of it is not his fault. He can't always help how he reacts to situations and his emotions. This child is the same way. It is my job though to help him learn how to cope and help the mother at the same time. Granted some parents do not care to use our methods at home or believe they do not work, but at least I can go home knowing I did my part and it is in their hands.
As she left I stooped down to the child's level held his shoulders and said quietly "Hey does something special happen tonight?" He looked at me and his eyes lit up " Yes, yes he said my daddy is coming home tonight on a big airplane" I told him that between now and when you go get daddy it was his job to help mom and do everything she asks so that when they go pick up daddy he can hear what a good, helpful boy you have been. He got so excited he grabbed his stuff and said :mom we have to go I have to go home and help you get ready for daddy!" I had to fight back tears because I know her child can be so helpful and means well he just needs an outlet, someone who understands him and can handle him.
As she left I stopped and thought of how this is my life. While my husband might not deploy any more, and my son is younger than hers, I understand their situation. For the last 4 months she has handled the whole house on her own with her children, gone to work and had to come pick up those children to often hear of the antics. We do what we call a "Sandwich" we tell the good, the not so good and follow up with a good. However with this family I am creating my own sandwich maybe I should just call it bread because I am just going to tell her the highlights and eliminate the negative unless it is warranted. She has enough to deal with why make her hear the bad all the time?
I put myself in her shoes as she goes home to cook dinner, clean the house, do laundry and prepare for her following day. I think of how I am sure her kids will be under food and into everything just like H. I thought of how in a few hours those kids are going to have their world flip again because their family would be whole. Would this cure the problems? Nope. Though it might make it easier to have the tag team like I have. Tag time is a great thing and hopefully now this option will help them. I have some handouts I came across that I hope will help them.
I am just thankful at times like this that we got help now and are not waiting till he is older. I am just glad I have gone with my mom instinct and doing what I can to get him help so he can have the skills and help to get through tough situations as he gets older. I am thankful that my days of hearing how bad they have been are getting far and few between. Though this week has been tough but there are lots of factors in it on why they have been so bad.
I put that show on the other foot, walked a mile in it and realized that things are not always what they seem and we just have to put our self in that situation to truly understand it. I have a new perspective on things and hope to be able to utilize them in my daily use. Maybe it will make a difference maybe it wont.

Sunday, July 22, 2012

Snap shots of summer fun

He always wants to wear his daddy's sunglasses

He wants to drink out of a water bottle
Uncle Joe teaching him to hang from the monkey bar

Sporting his new ID tag. We hope this will help 
in case he ever wanders away from us. He really seems to like it!
He's Hunter and he knows it! Love them boot.

Lets see how many of us can fit into a dog create!

Planking on the bleachers at the softball game

A very innovative way to eat cereal

Sweet little guy so peaceful

Hannah read almost every night to H. He loves it and there is a real bond between them.

Monday, July 16, 2012

Doing what is best

Things in our life are never what they seem they should be anymore. Of course why should or would it be. If that was the case no one would have problems, complications or difficult choices to make. If we knew how we thought it should be would be how it was then we would probably have a picture perfect life. Selfish but perfect. 

The girls are still here for the summer and I had been talking with their father on keeping them here for good. For what I was thinking was for not so selfish reasons actually in the end in ways was. I wanted them here because I am there mom, they need me and I need them, I can send them to a good school, I wouldn't miss them when they are not home with us. I figured in my mind I am mom so of course I can give them the best care because after all isn't that what a mom does? I mean who doesn't think that in most cases that a mom is the best fit to take are of her babies? We carry them in our wombs for 9 months, go through hell and high water for them so why should we not be the best ones to raise them!

Tonight I spoke with their father and said that the school here was just as good as Dallas, I really wanted them here with me because I am mom and I know what they need, I could provide them with everything they would need. It was a real eye opener when I realized I might not. It would not be on the parenting aspect, or the competent aspect it would be on what is best for them aspect. Yes I am their mom and they are my daughters and a daughter needs their momma but they also need the best help and the best education. Both girls are battling some problems in school that Scottish Rite is assisting with. Hannah is in a specialized program at her school and has already had to repeat because of the problems she is battling. Ella is about to get her testing and evaluation done through Scottish Rite and hopefully get on the same program as Hannah. The catch well Abilene does not have a Scottish Rite or anything comparable to it. I discovered budget cuts this year will effect special ed and would more than likely effect the help the girls receive. While the girls are in regular classrooms Hannah has special work they do with her outside of the classroom during the day. That is what got her through last year. 

I had to put in the forefront of my mind what was more important. The need to have my daughters here to raise them because I am mom and give them everything they need here or in a few weeks send them back home to their father and let them attend the school that has helped them make it through a lot of rough roads. The principal has stated that if the girls left they could lose their spot with the hardship they have and if they did get another one it could be a year before it could go into effect IF it went into effect. We would have to start over with the program they are in and that already took months of dealing with the school board to get going. Is all of this worth the possibility of the girls not doing as well out here and having to repeat grades? To me no. Self esteem is a big thing for me and I want my girls to ooze that and I know if Hannah had to repeat again she wouldn't handle it as well this time and I know that Ella would be devastated. To me that is not worth it.

My children's ability to thrive and grow is more important than anything. If H had to stay here while Chris lived else where just to ensure that he got the best treatment and care possible I would do it. Family is where the heart is. If our hearts are always together in our minds and thoughts then we are always a family no matter where we are. I just need family and friends to understand that also. It is not that I am giving up on them. It is the furthest thing I want to do. If I was giving up I would say screw what their needs are and what is best for them and keep them here. At least I get what I want. I am doing as a mom what is best. If your child had to get a special treatment once a week and it meant that you had to live hours away from the rest of the family just so your baby got the help they needed you know you would do it. This is the same for me. 

While I hear why not just go back home and raise the girls? To move cost money, to rent cost money, to sustain life after moving etc cost money. If we left here we have no money, no way to support the kids and no place to live. So while yes in conversation moving sounds so ideal think about it the next time you have to PCS or move to a new part of town to a new home. Think about all the money and time that goes into it. You wouldn't just move to be where you want to be with no plan, no money and no nothing right? So why would our family do that? Trust me if we had all this extra money around we would not be stressing over so much. So until we can come up with a set game plan with a secured job for myself and Chris, a secured place to live that won't leave us with nothing once we move then for now this has to be home because we have a place to live, job and the things we need to get by. 

I just hope this clears the air and sets everyone straight. I know that there was things that left me upset at the end of last year but those have since been resolved and a better understanding has been made. Guidelines are set and will be followed. I feel a lot better. Just have faith and trust in us that we are all doing the right thing. I need positive support right now. This is my reality and I am doing what I can to embrace that.  I can not doing being full of negativity and doubt.

I know this will be very hard on not only the girls but H. He has formed a bond this summer that he does not even have with Chris and I. He follows them and demands their attention. Hannah has a way with just making H content and happy. She reads to him all the time. This has a dual purpose. She gets that practice she needs and he gets the verbal help he needs. Their interactions have really helped each other so much this summer. I am sad this is coming to an end. I scared of how this will effect H. 

For now we are focusing on the time we have here and what we can do to make the most of it. I am hoping all these new therapy plans for H will help him and maybe it won't effect him as bad as I anticipate in my mind. Hope for the best and prepare for the worst. It's how I live. I am always ready for worst case. Maybe that makes me a pessimist or maybe just a realist. I also think it keeps me from being totally let down when what I was expecting does not pan out. I guess it is just doing what is best.

Saturday, July 14, 2012

Time is flying

It is funny how in a weeks time your outlook on things can change so much. This time last week I was very down and felt like despite our best efforts we were not going to get through this. Everything around us has been a test of our strength and abilities.  While I felt we had failed I realized that the only way we would fail is if we just throw in the towel and give up. After all what can anyone accomplish if they just walk away and give up?

I stop and take a look at the good things and what we do have. If I always focus on the negative I wont ever be thankful for the positive in our lives. I have 4 wonderful children. They are smart, supportive and helpful. I have a husband who is doing what he can to take care of this family. If that means he is never home to do it he makes that sacrifice and does it. I have many friends and family that love us and would do anything they could to help us. I know they are pretty great friends because lately I have felt myself slipping further and further away from my social self but despite it they are still right there when I need them.

Last week Sean went back to Dallas. This is the first time he has been out here with us since all of this has gone on with H. This time out here was a bit more stressed and different than in the past. Sean is getting older now and hitting those lovely teenage boy years. His and mine views on things have began to clash a lot and I know its typical. This time taking him back was hard. I know how much he misses his family, friends and life in Dallas so instead of asking him to stay longer for my own selfish reasons of just having him here I let him go back on the day scheduled. I know he loves me and I he knows that I love him. I think this time however it was different because he had finally started getting out around here and making friends. At least now when he comes to visit he can have some kids his age to hang out with.

This time with the kids so far has been so much different than in the past. They are having to learn new ways to interact with their brother and understand that while this is how they thought we would do things with him it has now all changed. They simply can not lay him on the floor and tickle him like they used to it now bothers him and agitates him to the point he bites and pulls hair in defense. We can't just go to the park because we know that I won't get to pay much attention to them I will be focused on making sure H does not take off. I do keep them at the pool when I can because H is happy there and seems content in the water and of course the girls enjoy it.

Thursday H had his EEG. We have no results yet and I am sure they will come back normal it was just a precaution since he was having odd episodes of zoning out with no response to his name or being touched and he would tense up and his body would shudder. This could be related to his sensory issues but to error on the side of caution we had an EEG done to rule out other things. As soon we we know more we will let everyone else know. The test itself has been sent to Cook's in Ft. Worth and they will read over it and have prelim results to our pediatrician possibly this week but the full report would take a week or so.

H is starting WTRC this week. For the first two weeks he will get speech. Our OT therapist is out for the first two weeks due to surgery so when he gets back we will do the other evaluations they had suggested. We are also awaiting for approval for ABA therapy for H since his doctor has to sign off that we can do it. With this psychological eval they want to do this will give us the most official results of what we are looking at. This would also keep us from having to go to Lubbock! I am looking forward to getting all this set up for him.

Well our summer is just flying by. I can't believe we are in the middle of July already! School is starting up in about 6 weeks for all of us. There is so much left to do this summer I hope that time slows enough that we can enjoy it some! We have a fun weekend planned. I am bound and determined to bust H out of his new found comfort zone and get him to do things he normally would like to avoid. Fingers crossed and wish me luck!

Thursday, July 5, 2012

Happy 4th of July!

Here is a picture post of events from today. H is not a fan of fireworks but I pretty much knew that. We had a great time with friends and the kids got to be up close (with in safety limits) to the fireworks and thought it was pretty cool!
The 4th of July strawberry cake

Hannah's triple strawberry birthday cake!

My attempt to get at least 1 picture of a firework.

Sean and Hannah are trying to light a sparkler with a punk that was given to them. Both got to jumpy to light it on their own.

They tried hard to work together to light it but they just had no luck. Eventually  my friend Desire had to help them out.


Finally got it all lit up. 

It took some work but we finally got hers lit. Sadly I was not able to get a good picture of her playing with it.

Very BRIGHT fireworks! They had to close their eyes because they said it hurt to look at them.

The soon to be birthday girl getting silly with her little sister.

He got so overwhelmed with the fireworks that as soon as there was  a break in the show he curled up crashed out and  spent the rest of the evening resting there!

Ella said she was not going to let crickets in the house so she will throw them at the crickets to keep them out!

Since we messed with the schedule so much today we paid for it when we finally got home. I went upstairs grabbed  his "miracle" blanket and in a matter of minutes he was sound asleep. This blanket is so amazing!


Sunday, July 1, 2012

Escaping Denial

I have read that when a family finds out they will be caring for a child with some sort of life altering illness or special need it is typical to experience the grieving process you experience when you loose a loved one. I never believed it and found it to be quiet hokey as I have dealt with death of two loved ones and before now could never see the two in comparison. In fact I felt it to almost be an insult to those who have lost loved ones to have this be compared as the same. I felt this way until recently however. Again this has still been a learning and growing experience for our family so I am taking this as a lesson learned.

Lately now I find myself thinking that " Ok this was real eye opening and now I want my life back" or that " I am so super paranoid and over reacting that this is all in my head and not really our life now." According to ECI I am still in the denial stage of H's new life. I have to say yesterday was the hardest day of my denial stage I think I even hit on some anger while I as at it. I awoke to hearing the sounds of my children in the other room laughing. It is one of the best sounds a parent could ever wake up to. The morning seemed so normal so "typical" it left me thinking "How could I possibly have a child with these problems his doctor and therapist say he has." At that moment I sat up and said " Today H is normal and I don't want us to endure this anymore. It is all in my head nothing is wrong and he will be treated just like any other boy his age." In my delusional world I think I was trying to double up and claim that as acceptance while still living in a world of denial. How could this child so smart, so perfect, so well loved be the way he is? Who did I piss off to have this happen. Hey throwing in some self pity in my mind seemed to be the only way to race through this so called "grieving process".

Suddenly I snapped back into reality when I hear the girls trying to get H down from his dresser, after biting Ella and running around the room. Something triggered him to have an episode and go nuts. Probably all the activity and noise. It was at that moment that it hit me. This is my life, this is my new normal and most importantly this is H's new normal and his new life. So this is what that whole grieving thing means. We grieve the loss of what normal life we think our child might lead. We don't necessarily bury it or have a service for it's loss like we do that beloved family member, instead we have to let go of that life we thought our child was going to have and learn to embrace this new life given to us. There is a reason, some unknown deep reason, that we have been given this new life. We could spend this time wallowed in self pity and they why me, whoa is me, I am all alone, or we can suck it up move forward learn our new life, embrace it and accept it and more forward.

I am vowing to take each challenge and learn from it and go forward. We will not let H sit at home couped up hiding from life. We are going to submerge him in daily life experiences and helping him learn to cope. He is teaching is much more I feel than we are teaching him at this point. Each day we learn just a bit more on what makes him tick. Some days we cheer successes and some days we lick our wounds and learn from what went wrong. Much like last night on our Walmart run. Sometimes I forget for a split second what we are dealing with and it is like that kid can hone in on it and take advantage of that lapse of judgement. I tell you this kid is way to smart.

A quick recap of our disastrous Wally World run.... We decide to take the younger two to the store while leaving the older two at home. We got what we needed and figured with 3 sets of eyes and hands we would be good to go. It actually wasn't a total disaster until the end of the shopping trip. Usually now when we hit the check out line it triggers H to get very anxious and antsy. He wants out of the cart and if he does not its a serious meltdown. I think  he knows the next step is to leave so he decides to cut out the middle man and say LETS GO! The guy bagging was going as fast as his teenage hands would allow him but he was not quick enough for our critic! I put H down next to Ella, turned my back to place a few items in the 2nd cart we had just retrieved. It was no longer than a few seconds of grabbing a bag and placing it into the cart that it happened. I looked up and both of the kids were gone!

I can only assume that H took advantage of my lack of attention and bolted! I had no idea which way he went. We were close to an exit so it made my stomach just knot! I ran to the door and nothing. I looked up the big isle saw nothing. I hurried and doubled back to the other exit and figured at this point he would have gone out it because I went the other way. A lady asked if I walked by if I was looking for two kids. I couldn't give a verbal response just an emphatic nod of my head and my eyes forward. Apparently she did not like that I did not say thank you and screamed out as I blew past " THANK YOU!" In a snarky tone. It is then I felt the tears coming down my face. I prayed, I prayed for the first time in a long time. I begged that my baby did not make it out that door, I begged and prayed that he was in Ella's line of sight and that she had him some where safe. Granted she is 7 but she knows that he can't walk out that door without us. I swear this exit is not normally this far away but today it was. I got to the exit I looked out and nothing. My stomach sank. It was at that moment I saw the most darling head of red hair followed by a plead of "Please stop Hunter! That is not ok!" I could breathe now. My little girl diverted him from an exit and had him running up the clothing/ jewelry isle!

 I scooped him up. Ella had no idea he had no idea he would not stop despite his name being called and her pleading. He was in his own world. I hugged him tight as we walked back to Chris. I realized that we are not as prepared to handle some of these things as we had thought. My heart was racing and H had no real expression on his face. Of course he had no idea what he did was not ok and that his mom was thinking the worst possible thoughts ever. It was this event that has Chris and I discussing what sort of help we really need to get for H. As of last night the thought of a special dog is now on the table. Does not mean we will get one but that we want to see how effective they are if it is a good match and how it would all work. I have two friends that have or are in the process of receiving  one of these special dogs. I know just what I have been told and what I am gathering from the net.

A service dog is not cheap and it is quiet a process to obtain. We are still working to get the lap pad, vest and the oral stimulation toys. We are still working on getting therapy covered. We have a meeting with SSI Thursday. This will be, from what I gather, a very long meeting. This would give H money to put towards medical expenses each month. We have a phone interview on the 11th for CHIP, SNAP and other aide. I will get the final info tomorrow from CCPO on assistance with Child Care. A few have asked would we fund-raise. Honestly I am not sure. I love helping others with theirs but I am not sure I feel comfortable taking that route. I hate asking for money for simple things I can't put myself in that place now to ask for money to help for things like this. I am however having discussions with friends who have done them or hosted them to see what it entails, how it has worked, their success rate etc.

I love finding more and more support from people around me. I have found it so comforting and not feeling so alone when I meet someone in the same boat. Even if it is just off a support page it still gives me hope and motivates me more. Support and encouragement plays such a huge factor in all of this. I go to bed tonight feeling rejuvenated and encouraged. I feel this new sense of hope for H. That is all I can do is hope that I can give H everything he needs to thrive and succeed.

Wednesday, June 27, 2012

Just a quick update

I had thought today would be the day of more info but because I am going a million miles an hour I am a day early. I guess it is better than being a day late. However I still have some information to share. Its not much but I am up and this is killing time before H wakes up for his two hour period of just being awake.

After a few nights of the blanket we are seeing progress and a pattern. Once we give him the Melatonin  about 30 min later he is done. He has to however fall asleep on the couch. Not ideal but honestly it is sleep from about 9:30pm to midnight. Its the two hours in between that is not fun for any of us but around 2am he is good till 8am. The blanket has made a huge difference. It took a little getting used to but now he seems happy with what he has.

Tuesday we got some news that floored me, let me speechless. We have a friend on the East Coast who has a son Landon who has Autism. They have a facebook page Paws 4 Landon-https://www.facebook.com/PAWS4Landon. The Clark family is comprised of some pretty amazing people. Jaime and Chris used to fight fires together and just recently regained contact with one another. I was shown their Facebook page through Chris and felt for this family. Finally after a few weeks of looking at the page there was a post that Michelle put up and I commented. It didn't take long for a friendship to form. Suddenly I didn't feel so alone. Shortly after that I came across her friend Christine who is in El Paso and her husband is Active Duty Army. I feel now like I have known these ladies forever! Just recently I became friends with Robin Tenace who has now proven to be a savior. Our children are all on the spectrum and all dealing with similar things. Despite the miles between us all we have just formed a bond.  It has made me a little less stressed and little more at ease that I have people I can count on. 


I never knew how true those words would be until my lunch that day. Monday after my blog went up some friends and family came through in ways that warmed my heart. Seeing as insurance for now won't cover therapy or items we need for H we have to pay for all these things out of pocket, rely on state funding and donors. The message I received on Facebook caught me off guard, took my breath away and left me in tears of happiness! Michelle and Jaime Clark had Robin make a weighted blanket with the correct amount of weight for H. It will be Buzz Lightyear! How awesome is that?! I called Chris right away and we both just cried. Finally our boy was going to sleep well with an item as simple as a blanket. We are on our way now! 


This morning I got a call from WTRC about a anonymous donor who wanted to make a blanket for us. I told them the amazing story of our friends and asked that the blanket go to another family with a child like H. Again my heart was smiling. God is good. There are still wonderful caring people out there who will help a perfect stranger. It makes you put things in perspective. I was given this challenge because he knows I can handle it. I am facing this challenge head on and going to be the biggest advocate for my baby that I can be. We are going to take all these road blocks and turn them into speed bumps. We are full steam ahead and not going to stop.

For those that had offered to help the items we are still needing to work on getting are the lap pad which we want to order through Robin Tenace and those 25.00. The lap pad would be used while H is sitting to help keep him from getting all wiggly and keep him calm sort of like the blanket just not as big and easier to tote around.  The other thing we are in desperate need of his a product from Z Vibe.http://southpawenterprises.com/OralMotor/DZ-VibeTipAssortmentKit.asp . This will help with his issues with his oral fixations. The pressure he can get the chewing will help him with anxiety and over stimulation. These items can be essential for him to not go on overload. Eventually we would like to get him a weighted vest but the ones we have come across start at around 170.00!! That is just not in our budget and we are hoping that if we do qualify for some assistance from the state we can purchase these items to help him.


For now we can do small things to help him such as wearing hats and sun glasses when we go into stores with heavily used florescent lights to help keep from being over stimulated. He likes to look at the lights but to him the lights blink which causes him to lose control. So when he is at school or out in places like this we will wear sunglasses and hats. He likes both ok but hopefully with regular use he will realize how much wearing these help him. We will continue with his back pack filled with things that go such as trains and cars. Anything that spins will keep his attention forever. Since he loves vibration we will use the toothbrushes that vibrate and see what toys we can find that do the same.


I find myself daily educating myself on what we have on our hands. I am going to order a tool kit from Autism Speaks tomorrow with all sorts of info we need to help better care for our son, what therapies will work best with his condition and just what to expect sort of.  I guess its the instruction manual they forgot to give us at the hospital when we brought him home ha ha!  I have also found a few support groups on Facebook that are loaded with helpful information and people asking questions of things I have not even thought of but know they totally apply to us! I really feel on top of things and like I have brought  my A game! Lets just hope we keep it that way. 


Thank you everyone for all your kind words, love and support. Chris, I and the kids could not make it through this without all of you. We are so blessed to have such amazing people in our lives who will reach out. You warm my heart and make me want to do what I can to pay it forward. Hopefully soon I will find ways to do so. I can never say how much we appreciate all of you and that your love and support are what gives us hope we are going to be able to tackle this and give H the best possible opportunities we can!

Last night on the couch with his loaner blanket. 

I guess he had a rough day judging by his hand lol. Again though he rests peacefully  now that he has what he needs! 

Monday, June 25, 2012

The results are in

Today was a big day. Hunter had his first apt with WTRC and it was very productive. We spent and hour talking to Speech and OT another with another specialist. In one short hour we learned a lot about  our son. I seem to say that a lot lately but this time we really did learn a lot. Some good some not so good.

OT came in and did some work with him while we talked with Speech and the other specialist. Now mind you its 1pm this child has not napped so I truly expected the worst. The fact that he had been on a random biting spree today too was not comforting me in how this appointment would go. He sat at the table with his OT and they got straight to work. While he has great gross motor skills he is raising lots of flags with his social emotional, sensory, speech and comprehension. We for now are possibly nixing Dr. Rodgers in Lubbock and seeing more therapists and help at WTRC.

We will be doing ABA, speech and OT. There is actually other things that we will be testing and adding but my brain just went to mush hearing all this. These words are so definite and official. It is all on paper now and on his records. There was lots to take in but it is all in the best interest of making him function better and be a happier more adjusted child. The positive to today was getting to use a weighted blanket to see how it works so once we can afford one we can buy one for him to use.

Later this week will get get a call for when he will start all this therapy and we will also get a copy of these records to have and once I get them I will let everyone know exactly what is going on. I figured to let everyone know for now what is going on this should suffice.

I am up to my ears in paper work to apply for aide from the state. Sadly our insurance is not going to cover this so we are looking for grants from WTRC and help from the state to cover all this. I have spent the last 4 hours filling out this stuff instead of hanging out with my family. It really bothered me tonight. Wednesday I promised the kids a trip to the pool because I feel so bad that they didn't get my full attention tonight. These kids have been troopers! They love their brother and want to help and I am beyond thankful for this. So I am going to wrap up this blog so I can finish filling out paper work. Look for a more in depth update here in a day or two! 

Saturday, June 23, 2012

Rest in peace baby brother...........

Today March 27, 2009 at around 12:45pm I recieved a phone call that will forever change my life. Today was suppose to be a happy day my little sister turned 23. But God had something else planned that day. Jenny did turn 23 and all was just fine until 12:45pm. I was just getting ready to go on my break I was cleaning up from lunch and Heather walks into my room. All she could say was say to me was "Jamie you have an emergency call". I normally never get calls at work I never give out the number actually. I also realized that my battery was dead in my cell phone so no one would have been able to reach me anyways. I walked out to the hall and I calmly said "this is Jamie" I was not prepared to hear my Aunt Karen's voice on the other end of the line. I actually expected it to maybe be the kids school or even my mother but not my Aunt Karen. The only words I can hear and recall where "Jamie Alex is dead, he died." I think I slid to the floor crumbled in a heap screaming no no no. I forgot all about the phone call and everything else and just cried and cried. I didn't know what to think or do or say. I was numb so totally numb. I recall Heather mentioning that my Aunt Ann was on the way or something to that effect. The next few minutes where a blur. I do not recall what I did or said but it was a blur. No one at the time knew exactly what was going on details where vague. After a while I know I arived at my grandparents house where he was at......


I started this entry 3 years ago. I couldn't bring myself to ever finish it. I wanted to finish it on his birthday since he would be turning 23 this year the same age as my sister Jenny when we found out that day he had died. I wanted to finish this to honor him.

I can still recall all this as if it was yesterday. My heart hurts so much when I think about this day. A day that should have been saved to celebrate a birthday and a happy day turned so dark and sad. It's not like it was any other day but one that will now forever have a double meaning. One of both life and death.

It has been 3 years and not a day goes by I don't think about him. I keep him in his box on our book shelf. The kids still talk about him, ask about him, they want to know all about him. I make sure to share plenty of stories of his life. Lately though I find myself looking at his page more. So many things have happened in our lives and sadly he can't be here to celebrate and and be a part of all. I know he would love to be apart of it all.

12 years ago I remember calling Alex on his birthday and telling him that he would be an uncle only two days later. He was excited. He wanted Sean to be born on his birthday. Sean and Alex had a great bond. Sean always loved when he got to come help take care of him and spend time with him.  A few years later Hannah came along and his love of being an uncle just grew. Sadly he didn't get to know Ella as well and of course never knew Hunter. There are days I see a lot of Alex in H.

I miss him dearly. I wish that we could go back and time and change things. A lot of things. I wish I could go back and take back the things I said to him. I wish we could make up and move on. I live with this guilt of hurtful things I said and the fight we had just a few months before his death. I didn't agree with the choices he was making in his life and how he was handling things.

 I recall the last time I saw him alive and it breaks my heart now. I picked him up at the book store shortly after he and his boyfriend had a fight. He was so upset and I was distracted and backed into a car in my blind spot.  Wouldn't you know it would be a lawyer I hit and his nice car not his beater that he would normally take out on the weekend! Alex screamed at me to just GO! I yelled at him called him names and told him how I was not irresponsible like he was and that I was going to leave my information for the owner. The whole way to my grandmothers house we fought and yelled while he flipped out on the phone about his current situation to John's mom and I was on the phone with Chris so upset and trying to figure out how I was going to fix the car I hit and all this other stuff.

The fight escalated for days and then we just stopped speaking. I also stopped speaking to Cameron. The fighting had been so tense it sort of interfered with most of us. It took his death to bring us closer together. It took his death to make me realize that one day we will be gone and we can not take back the things we have said to one another in moments of anger. No disagreement is worth letting burden you a lifetime. No fight should effect those to the point of ever speaking again. Sometimes we must swallow our pride and make amends, fix our wrongs and work on creating better stronger relationships.

I know everyone tells me that my brother forgives me for our fight and the things that were said. Honestly though, while it might be true, to me I will always feel guilty for what I said and never apologizing and taking back what I said. Maybe one day I will let myself let it go that he has forgiven me. 

Sunday, June 17, 2012

Confliction

Another week another update. The last few days I have debated if I should continue with this writing. I don't write for sympathy or pity. I don't write for people to feel sorry for me or get attention. I write from my heart, the words and emotions I put into this is that of how I actually portray the things in my life and as a way to open up and express my deepest thoughts and emotions. I force no one to read this I post it for those who are interested in sharing in our lives and knowing what all is going on.

This week has been full of emotions all good and bad. Not just relating to H but as a family. I never write these to complain about my family or my children. These last few days have probably been just a little to much togetherness and so therefore there has been more fighting and irritability. I do expect this because it is summer and they are spending a lot more time together than they do on a regular basis. But it is all part of having kids so I just roll with it. H has still had a rough time adjusting to all the changes and has gone back to biting. He bit the snot out of Hannah's face this morning and out of Ella's hand. Sean might be sporting a bald spot from H also! They are troopers. They have taken it and just understood that this is how he is. Love those babies. I got some great news however, news I have been sitting on for a few days but now that it is all official and so I can now proclaim that my sister is going to be a MOMMY!!! Jordan and Ronnie are expecting their first daughter on or around Thanksgiving. This news has made me so happy. Nothing could make me happier than to see my sisters start their own families. So even though I have sworn off hosting baby showers and such after such bad experiences this time I am making the exception. I can not wait to celebrate!

With the last few days being so busy I had not been on to check my email. Normally I get it sent to my phone but using a back up phone I didn't get the notifications like I normally do. Yesterday I finally had the chance to see all my emails I have missed. I have not had the best relationship with my aunt Karen since moving out here. She gave me an absurd amount of grief for leaving the girls behind and that I was not a good mom for doing such. She will at the most random of time send me hurtful emails, facebook comments and posts on my blog about what a horrible mom I am, what a complainer I am and that I am so selfish. Well she decided to strike again the other day after my last blog. I have gone out of my way to be so polite and friendly and she decides in the middle of the night to write such trash to me. I asked her about giving the crib we used to Jordan and the email she sent was so opposite of the one I read the other day. In the email I got last night she went on and on about how exciting it was to take a crib that has been around for a few generations to use for Jordan's baby. Just a few days prior she went on and on about how much I complain about my children and need to figure out how to fix each of my kids and that I should be thankful for what I have and how her husband, my uncle, endured all this chemo at the age of 60 and never complained and his parents never complained about anything he ever put them through. I felt such rage building up in my body, such anger and dare I say hate.

I decided that I have had enough of her hatefulness and that enough is finally enough. I clicked on her FB page and deleted her. I have debated on responding to her hate mail but have not figured out the right words to say. I don't want to be hateful in return for two reasons, one, I am not that kind of person and two, I don't want her to take it out on Jordan and revoke the crib. I still feel the need to say something but still just not sure what. A grown woman, my aunt, so full of jealousy and anger towards me someone who does their best and works their hardest. My children are not nor have they ever been a burden to me. As parents we all have days or weeks where our children test our limits, tick us off and make us want to sell them. We know however if it came down to it we would lay down our lives for them and that we would never get rid of them or harm them. I am sick of being compared to my cousin her daughter. I am not nor do I ever want to be her. I am who I am and that is who I want to be.

Today is Father's Day. We don't have anything big and special planned. I made breakfast and lunch and  will be making dinner. The two younger ones are napping and Chris and the older two are playing a board game. They really need this bonding time. I love it when they can all play together, get along, laugh and just be happy. This house has been tense for days so this was the break we all needed. I wanted to make a trip to the pool but another random storm is looming over our home at the moment. So I am sitting here listen and enjoying while they play and do their thing. I am hoping this happiness lasts the rest of the day. They are really into this game of Monopoly and are getting pretty hard core!  I hear H playing in his room and Ella is still down for the count. Maybe he will stay content until this game ends but I hear him knocking on his door.

No major apts this week or therapy. The 25th we have our first West Texas Rehab apt. I got the paper work to fill out yesterday. I swear I fill out more and more paper work. We are also doing paper work through the state for assistance. This has been recommended to us buy several people as we have so many expenses we are incurring and we completely qualify. So cross your fingers and pray that we can get some extra help.

Time to get the rug rat from his room. I hear him calling for dada. Happy Father's Day to all the men out there. I hope each of you are having a wonderful special day. 

Wednesday, June 13, 2012

Breaking Point

I have picked up this computer several times over the last few days to start to write. Every time I have picked up this computer something has stopped me. Usually its a cute little boy who wants my attention or 3 really cute big kids who want my attention for one thing or another. Regardless I have taken it as a sign that these things can wait and I need to spend my time soaking in my babies because they need me.

Since the weekend life in our house has turned upside down. Not all bad just taking a big turn from the routine we had going. H loves having his brother and sisters here. He loves it so much they are not to leave his line of sight without suffering the wrath of a major meltdown. He has a love for them unlike anything I have ever seen! If they go upstairs he must be in tow. What ever they do he must be doing also. While this is very cute it also has caused a few problems. We can't drop them off at the Youth Center or leave the house without them or else he loses it. Ella feels bad when we drop her off because she makes H cry because we have to leave her there. I tell her it will be fine once he gets to school he will go on about his day and not to worry. Be that as it may the kids hate to see him get upset and know now just how hard it gets when H has these meltdowns. They all do their part to pitch in to help make him happy. Sean likes to lay on the floor and let H rough house with him. Hannah will take him off to his corner and play with his toys and Ella likes to read him books. He loves all this attention of course.

Over the weekend most of our time was spent swimming like fish. We discovered H has a strong love for the water. There is no fear for him when it comes to to the pool. I think we know now what really makes him happy. Of course with that we also have one more thing to keep an eye on. He will take it upon himself to jump on in actually. I see some swimming lessons in our near future. Thankfully the pool is not to near the house and well secure with a gate even this Houdini can not master! With this heat though I have no problems spending time there though it is fun to have some nice relaxing family time and see all of us being active.

With the weekend I really started to notice some changes. H has really been struggling and it is breaking my heart. We went to a friends house for dinner Saturday evening and while the older kids walked to a near by park that left H to stay at the house with us. I did something though that I have not ever been able to do with him. I let him go outside alone. Before everyone jumps to conclusions he was in a fenced backyard with him in my line of sight. He wondered around out there with the dogs and seemed content. It made me happy and sad. I was thrilled to see him able to go outside where he loves to be and play but makes me sad because we don't have that luxury of letting him do that at our house. I know that if we had a a backyard however when he did have a rough time we could just let him go and get it all out. Let him do what he does best and just wonder and explore.

I noticed that his anxiety level has increased over the last week. He is having a hard time adjusting and is hiding. He wants to hide under tables, chairs and even beds. Saturday the meltdown was so bad that he hid under the bed and refused to come out and eventually fell asleep. The whole thing terrified me because he was banging his head and screaming. Once he was finally out after a few hours of this his body has scratches on it from rubbing on the frame. I was sad. I really just felt hopeless. I can't bare to watch him have these meltdowns. He is so angry and sad. No baby should be like that. I immediately started my search for tunnels and tents for him to have as a safe hiding place. In just an hour a few great friends stepped up and offered to help us out! I felt relief and peace. I want him to have the things he needs to keep him calm and safe. I know those who are closest to us see that too and are doing what they can to help. It makes me so happy and appreciative to see so many who want to help us.

This week has been tough. His mornings at school have been hard. Lots of anger and roughness. He wants to run from the room, take off his clothes, hide under the table and of course attack his friends. I hate putting his teachers through this. They are troopers and they are really stepping up to the plate to take care of H. ECI was not able to come Tuesday so I was not able to address the issues. I did speak to Staci and give her the heads up. She is hoping we hear from Dr. Rogers soon. Today I met with Becky his coordinator and had some good discussions on what is going on. We both agree some regression in behaviors and milestones need to be addressed again with his doctor. I am going to make a call to see where we stand with our referral.

All these minor set backs hurt me. I feel like nothing I can do is good enough for him. I want to help him but at the same time what I know, what I have been taught and trained to do isn't working. It leaves me feeling like a failure. Its times like these I just reach my breaking point and want to cry. Crying however isn't going to change anything or make it better so I suck it up and keep going. I wasn't given anything more than I can handle so apparently I can handle this. I just need to learn how to handle it all better. I am always afraid I am doing more harm than good. That if I don't do it right or over look something I am going to make it all worse. I hate putting that sort of pressure on myself but lately I find myself doing it more and more.

Well these sleepless nights have come back around. Apparently insomnia does not care if you have a job, house full of kids or a family that needs me. Maybe I should try some of that Melatonin. Well since it is almost midnight maybe I should give this whole sleep thing a try. H is down and has been for a few hours. Maybe I should lay down and see what happens.

Saturday, June 9, 2012

I guess his chew toys are not enough so the poor mermaid gets it!
Sitting on the back of one of the trucks. This is the place he loves to be every Tuesday night


He had a great time at Cook's but he was ready to leave the doctors office. He took all the paper off the exam table and went to town. I think they got the hint because a few minutes later we were on our way lol! 
Wanting to be just like daddy. He loves his wearing daddies glasses

He is so excited to hang out with his brother and sisters. They had so much fun today at the pool.

Testing the water. He would rather just splash for now.

He is just going to watch and learn how to swim like his brother.

"Here Sean let me splash your face with some water."

Showing us how much he loves his doggy. They like to hug.

Horse playing with his pup. This dog is so tolerant of his antics. They are like two peas in a pod.
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