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!

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.

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.

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!

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

"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.

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!