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!

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.

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.

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.

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!