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.