April was Autism Awareness month, however for our family every day, every month, every week, every year is Autism Awareness. Each day we learn something new and as crazy as it might seem I enjoy having this learning experience. This month has been a whirlwind of events and honestly I haven't felt this much emotion towards anything like this in a long time.
April brought so many different things most of them on the highlight list of most amazing. So many things fell into place and came to fruition it was almost like it was a dream. Our month started off with making sure our outside had plenty of blue light for the month. I think it looked great. We had lots of people at first drive slower down our cul de sac to see our blue light. I am hoping that by the end of the day they realized what that blue light outside our house meant. We made our own shirts that were tie dyed blue with puzzle pieces and Light it up Blue 2013 on them. I think they came out pretty awesome.
This month we also applied for a grant through the Joseph Thomas Foundation. This grant would help us get supplied and items that we otherwise would not be able to afford for H. We received enough money to get him 3 different vests, one was a neoprene pressure vest ( this one will be worn more in the cooler months, a weighted neoprene vest and a mesh compression vest. 6 chew tubes, a z vibe oral stimulation kit, and a trampoline. Along with that we also get 6 months of his therapeutic riding covered through The Legacy Complex and a generous friend of a friend donated a month of therapeutic riding along with a helmet for him to wear. It was like Christmas in this house!
Since the walk was this month we of course wanted to have some great shirts to wear as a team. I decided that for every shirt sold a portion of it would go towards our team goal of 1,000.00. I know we ended up selling 53 shirts and raised around 200.00 towards our team goal. Even with the small hiccups with the shirts they all looked amazing and everyone seemed pleased with them. I also had us do another fundraiser which I was nervous about because I really had never done them before. Black Box Pizza on base donated a dollar from each pizza sold on the 15th of April towards our team. We raised 100.00 that day!
April 5th I was told I was Category IV Civilian of the Quarter for the Force Support Squadron. I also took the Mission Support Group award and would go on at the end of the month for the Bomb Wing Award. I was blown away. I was told it was because of my outstanding commitment to my community, being a full time student on the Dean's List, and my hard work at the CDC. I told them I do all this because it is my passion not to be recognized for an award. On April 22nd I was given a MSG coin and was thanked again for all my hard work and on the 25th I went on to receive the Bomb Wing award for Civilian of the Quarter. I will now be in the running for Civilian of the Year. Pretty exciting stuff.
As the day of the walk fast approached I really did become a ball of emotions. I was about to be apart of something big and powerful. We were a team of 50 walkers. Only a few ended up not being able to join us and a few supported us from out of state. I had no idea just how big we would become but to see so many rally around us and support H was just breath taking. Three of my college professors saw just how many stood there to walk with us and they were in awe. People from around the community whom I am friends with stopped to tell me what a great team I had and how impressed they were with exceeding our goal. For our first year this is really a big deal to me. Not that this was a contest by any means but validation that I am doing my part to make a difference in the families and children effect each day by ASD.
So now here we sit as we wrap up a month of April and Autism Awareness. While I don't expect my friends and family to feel that Autism Awareness is a 24/7 365 event I do know they know my passion and my drive for it now. I really don't want to take our blue lights down or stop wearing our Light it up Blue shirts. I wear them and feel that maybe some way some how it is making a small difference. I will change my profile picture back to a wonderful photo of my children but know that this time next year I will replace it with my awareness photo for the month of April. It is tradition now.
So now we have until October to do just as well as I did here in April for our walk. We have chosen to walk at Texas Motor Speedway at the DFW Walk now for Autism Speaks event. Even if it is just me and my family I will know that it is still good enough and still making an impact. However I am a bit of a competitor and know I will want to some how beat my goal that I had here in Abilene. I am not sure that I will be I won't ever know if I don't try.
So now we kick off the end of the school year and prepare for the things to come in for H in the fall for school. Sean will continue with MiM's or Meet in the Middle, a program for NT children to help their peers who have developmental delays and participate in events such as Special Olympics. I am so proud of him for being a part of something like this. I realize now he knows what a passion I have for this and he wants to do his part. What a way to make his family proud.
Sorry for a long winded blog. It's been a while and I felt the need to sum up our month of events. It was really a month I will truly miss and look forward to encountering again next year.
Wednesday, May 1, 2013
Thursday, March 14, 2013
Selfish Moments
I love my job as a mom. In fact there is nothing more that I want to be in this world than a mom. Have there been days were I have sat back and thought what it would be like to not be a mom? I won't lie, yes I have. I do wonder where I would be, who I would be with and what I would be doing. It however, is pointless to go there, since I am a mom and nothing is going to change that and this is my life and were I am suppose to be. Do I get jealous of my friends who are childless who can on a whim go out and enjoy their free time and take trips when they want? Ya of course who wouldn't?!
This week has been tough. I mean really tough. I feel like we have gone back in time to almost a year ago. School has been tough, therapy tough even at home has been just plain tough. I think the highlight or maybe low point, however you want to take it, was today. I thought last night was bad but this one take the cake. I want to share my breaking point the moment that I realized something has to change, something has to give.
Anyways, after leaving a very rambunctious Physical Therapy session today we headed off to drop the girls at the youth center. Something about this particular drop off was enough to send poor H into a mood. We fought in the parking lot for a bit at the youth center and finally I had him strapped into his car seat, or so I thought. He was so angry and was dead set on getting these bubbles in the cup holder that he managed to bust out of his car seat while I was driving to get them. I swear the only thing that was missing from this catastrophe was the base police being right behind me as my child becomes a maniac in the back seat. I get him situated back in the seat and he proceeds to get upset all over again. We park and I tell him he may bring his bubbles into the school if he will calm down, hold my hand and walk into the school. He was actually doing pretty good and as soon as we got near the door he lost it all over again.
We walked into quiet an audience. Most of the CDC's leadership team (my bosses) were up front talking and turned when they heard the screams and shrieks. They tried to help but honestly it was futile. I walked him down to his room and he was in a pure anxiety attack. I tried to bring him in the room and he ran to the front of the building. The assistant director was there to grab him and tried to help. He was so upset no one could understand him. After a few moments we tried this drop off thing again.
I realized as we walked down the hall I would have to try another method. As we approached the door I realized this was not about me getting my extra 30 minutes of down time before I clock in and tend to 24 other children for the next six hours. This was about helping my son make the transition into his classroom so that he can get the most of the day. Regardless if it worked or not it was up to me, his mom, to do my best to set him up for the best day possible. So that meant sitting in the hallway with his lap pad, bubbles, money and his brush. After about 20 minutes of blowing bubbles, singing "You are my sunshine", and doing his brush, compression therapy we seemed to have seemed to have made a bit of progress.
I guess what I thought was progress was just sort of a front of some sort. We walked in the room and he grew upset again. We sat in the Safe Place and I offered him his comfort items. I sat for a few minutes and realized that I had to get clocked in. I hugged him and left feeling the most guilty and horrible about the situation I have ever had. It was at that moment I knew my evening plans would be shot because he would be way to worked up and out of sorts by the time we got home that evening. I was right.
While the rest of the day I had guilt looming in the back of my mind that this was not fair to Hunter that this was just getting to hard. He doesn't care to play with the children his age, he doesn't have social skills to deal with his peers, he hates change and to many unexpected transitions. I also felt guilty because I realized my one shot at a kid free evening for just a few hours was shot. I know that is horrible to think or say but honestly when you rarely get that time to yourself and I don't mean when you are at work, or at school, then you just get a little upset that you lost that opportunity.
Part of my honestly wanted to just melt down. I wanted to get angry at everyone who got to go out tonight and my family because I was unable to just have that break. I decided to put the least amount of effort into dinner. (We ended up having breakfast for dinner) and attempting to bake slice and bake cookies. Go figure those would be a flop. I decided to retreat to my chair in the corner of the living room and feel sorry for myself. I started thinking of everyone else and what they get to do. I don't like doing that but sometimes when I just reach that point I let myself go there. It is a bad thing today because then I get jealous and resentful.
Slowly as I started typing this out I can feel that tension and resentment lifting. I can see just how lucky I am to have this family that I as given. Seeing the world through my children's eyes is sometimes just what I need to do. As a parent we all have selfish moments and if you don't you are either in sheer denial or Mother Teresa, because honestly I know it happens. However if you just sit back and put yourself in your child's shoes and realize things happen for a reason, that this is your purpose it seems life on of the best things in the world to have happen to you.
This week has been tough. I mean really tough. I feel like we have gone back in time to almost a year ago. School has been tough, therapy tough even at home has been just plain tough. I think the highlight or maybe low point, however you want to take it, was today. I thought last night was bad but this one take the cake. I want to share my breaking point the moment that I realized something has to change, something has to give.
Anyways, after leaving a very rambunctious Physical Therapy session today we headed off to drop the girls at the youth center. Something about this particular drop off was enough to send poor H into a mood. We fought in the parking lot for a bit at the youth center and finally I had him strapped into his car seat, or so I thought. He was so angry and was dead set on getting these bubbles in the cup holder that he managed to bust out of his car seat while I was driving to get them. I swear the only thing that was missing from this catastrophe was the base police being right behind me as my child becomes a maniac in the back seat. I get him situated back in the seat and he proceeds to get upset all over again. We park and I tell him he may bring his bubbles into the school if he will calm down, hold my hand and walk into the school. He was actually doing pretty good and as soon as we got near the door he lost it all over again.
We walked into quiet an audience. Most of the CDC's leadership team (my bosses) were up front talking and turned when they heard the screams and shrieks. They tried to help but honestly it was futile. I walked him down to his room and he was in a pure anxiety attack. I tried to bring him in the room and he ran to the front of the building. The assistant director was there to grab him and tried to help. He was so upset no one could understand him. After a few moments we tried this drop off thing again.
I realized as we walked down the hall I would have to try another method. As we approached the door I realized this was not about me getting my extra 30 minutes of down time before I clock in and tend to 24 other children for the next six hours. This was about helping my son make the transition into his classroom so that he can get the most of the day. Regardless if it worked or not it was up to me, his mom, to do my best to set him up for the best day possible. So that meant sitting in the hallway with his lap pad, bubbles, money and his brush. After about 20 minutes of blowing bubbles, singing "You are my sunshine", and doing his brush, compression therapy we seemed to have seemed to have made a bit of progress.
I guess what I thought was progress was just sort of a front of some sort. We walked in the room and he grew upset again. We sat in the Safe Place and I offered him his comfort items. I sat for a few minutes and realized that I had to get clocked in. I hugged him and left feeling the most guilty and horrible about the situation I have ever had. It was at that moment I knew my evening plans would be shot because he would be way to worked up and out of sorts by the time we got home that evening. I was right.
While the rest of the day I had guilt looming in the back of my mind that this was not fair to Hunter that this was just getting to hard. He doesn't care to play with the children his age, he doesn't have social skills to deal with his peers, he hates change and to many unexpected transitions. I also felt guilty because I realized my one shot at a kid free evening for just a few hours was shot. I know that is horrible to think or say but honestly when you rarely get that time to yourself and I don't mean when you are at work, or at school, then you just get a little upset that you lost that opportunity.
Part of my honestly wanted to just melt down. I wanted to get angry at everyone who got to go out tonight and my family because I was unable to just have that break. I decided to put the least amount of effort into dinner. (We ended up having breakfast for dinner) and attempting to bake slice and bake cookies. Go figure those would be a flop. I decided to retreat to my chair in the corner of the living room and feel sorry for myself. I started thinking of everyone else and what they get to do. I don't like doing that but sometimes when I just reach that point I let myself go there. It is a bad thing today because then I get jealous and resentful.
Slowly as I started typing this out I can feel that tension and resentment lifting. I can see just how lucky I am to have this family that I as given. Seeing the world through my children's eyes is sometimes just what I need to do. As a parent we all have selfish moments and if you don't you are either in sheer denial or Mother Teresa, because honestly I know it happens. However if you just sit back and put yourself in your child's shoes and realize things happen for a reason, that this is your purpose it seems life on of the best things in the world to have happen to you.
Tuesday, March 12, 2013
Just keep your head up
I have often been told what a strong woman I am for doing all that it is I do for not only my son but for my family. I have felt on top of the world and empowered. The motivation and drive I have had has been unreal. How sad is it that it just takes such a small word, a sentence a person to completely knock you down and make you wonder why you are doing what you are doing, second guess everything you do and question your own sanity? It happens because we let others around us influence our ways of thinking. Some are better at resisting and ignoring others just take it all to heart and do worry about what others say about them. It sucks that some of us are wired that way and that people have to be so mean but at the same time sometimes people don't realize they are being mean. They are just sometimes uneducated, inexperienced or just plain ignorant when it comes to speaking to people on things they are not familiar with.
I have been proud of my quest to educate myself on ASD and what my son is going through. I want to help others and be more of an advocate and educator. However due to my own insecurities I sort of just kept my motives to the world of Facebook and those who are closest to me. I decided to throw caution to the wind and say screw what others think of what I am going through and what others think. What seems so small and trivial really got to me more than I think it should but at the same time left me wanting to make more of a statement. It all was over a poster for our H's walk team in April. Someone threw it away shortly after I left it in our break room and it left me ticked off. After some encouraging words from friends I decided to to create more posters and place them all over the place. It was an awesome feeling I got to just know that I don't care what you say or what you do this is who I am this is what I do and you can just get over it! The way my friends supported me on this was amazing. It really boosted my confidence and made me feel invincible.
I think what is hardest to deal with right now is those who spend the most time with him and don't take the time to understand him and what he is going through. The fact that he looks "normal" and acts "normal" is enough for them to dismiss his diagnosis. I don't want to look at his weaknesses and I know he has so many strengths but my fear is that if his weaknesses go unnoticed that this will only cause more problems later on in life. I want the absolute best for him and for him to know that we will fight for him with ever thing we have.
Today at speech while he was doing great and making progress the conversation that we had was not really comforting in my eyes. While she said he has made so much progress she seemed to discount my valid concerns and wanted to graduate him from speech maybe seeing him twice a month. While I am happy part of me is concerned because there are things that still need to be worked on such as being able to talk to others in a social setting, how to control his talking when he is worked up, overwhelmed and excited. There are other things that concern me about his speech but to me it doesn't matter now because after I said them she said "Well he has what P something disorder so that is part of it." I said yes he has Pervasive Development Disorder. The fact that she works with my son WEEKLY has a COPY of his diagnosis on FILE made me slightly irritated. Through a fake smile and clenched teeth I thanked her and left. I understand she has several patients but I would think with needing to know your patients diagnosis would be important when working with them. My child is not some client he is Hunter he is a child who needs a lot of help in the social aspects along with just day to day.
When I came home from dropping him off at school I let all these hit me and I finally decided that enough was enough. I called his doctor in Denton and spent an hour on the phone with her. I poured out all my frustrations and concerns and she was amazing. She addressed them all and made me feel so much better. She told me some steps to take when it came to preparing for our IEP meeting, how to handle his speech therapist and those who must interact with him who seem to not be aware of what his disability entails. She reassured me that I am doing a great job with him and that I will be his biggest voice and to not settle unless I was totally sure of what I was doing. While some of this is easier said than done I my focus now time and attention on the important things... Keeping my head up!
I have been proud of my quest to educate myself on ASD and what my son is going through. I want to help others and be more of an advocate and educator. However due to my own insecurities I sort of just kept my motives to the world of Facebook and those who are closest to me. I decided to throw caution to the wind and say screw what others think of what I am going through and what others think. What seems so small and trivial really got to me more than I think it should but at the same time left me wanting to make more of a statement. It all was over a poster for our H's walk team in April. Someone threw it away shortly after I left it in our break room and it left me ticked off. After some encouraging words from friends I decided to to create more posters and place them all over the place. It was an awesome feeling I got to just know that I don't care what you say or what you do this is who I am this is what I do and you can just get over it! The way my friends supported me on this was amazing. It really boosted my confidence and made me feel invincible.
I think what is hardest to deal with right now is those who spend the most time with him and don't take the time to understand him and what he is going through. The fact that he looks "normal" and acts "normal" is enough for them to dismiss his diagnosis. I don't want to look at his weaknesses and I know he has so many strengths but my fear is that if his weaknesses go unnoticed that this will only cause more problems later on in life. I want the absolute best for him and for him to know that we will fight for him with ever thing we have.
Today at speech while he was doing great and making progress the conversation that we had was not really comforting in my eyes. While she said he has made so much progress she seemed to discount my valid concerns and wanted to graduate him from speech maybe seeing him twice a month. While I am happy part of me is concerned because there are things that still need to be worked on such as being able to talk to others in a social setting, how to control his talking when he is worked up, overwhelmed and excited. There are other things that concern me about his speech but to me it doesn't matter now because after I said them she said "Well he has what P something disorder so that is part of it." I said yes he has Pervasive Development Disorder. The fact that she works with my son WEEKLY has a COPY of his diagnosis on FILE made me slightly irritated. Through a fake smile and clenched teeth I thanked her and left. I understand she has several patients but I would think with needing to know your patients diagnosis would be important when working with them. My child is not some client he is Hunter he is a child who needs a lot of help in the social aspects along with just day to day.
When I came home from dropping him off at school I let all these hit me and I finally decided that enough was enough. I called his doctor in Denton and spent an hour on the phone with her. I poured out all my frustrations and concerns and she was amazing. She addressed them all and made me feel so much better. She told me some steps to take when it came to preparing for our IEP meeting, how to handle his speech therapist and those who must interact with him who seem to not be aware of what his disability entails. She reassured me that I am doing a great job with him and that I will be his biggest voice and to not settle unless I was totally sure of what I was doing. While some of this is easier said than done I my focus now time and attention on the important things... Keeping my head up!
Friday, February 1, 2013
If I could turn back time
Tonight I got a little quality time on Facebook due to a child who wanted to lay in his tent and me being ill. I actually got to see posts from friends I would normally miss and sometimes wondered if we will still connected on this social site. I started looking at friends pages and realized I have actually lost quiet a few in just the last month. While this normally doesn't bother most heck even me most of the time I saw that I had lost quiet a few friends who used to be in my close inner circle.
I guess around the time of us dealing with H and his diagnosis and the focus of school, work and family caused me to neglect my friendships. I know I should have done more to let them know I was still there just a bit distant and preoccupied. I have only one or two friends out of that close circle and that makes me sad. I am so aware that life happens and we grow and change. Most of those in my circle are still military wives and have that along with their other obligations to focus on. I respect that and I need to understand that my life as a military wife is now over and I need to move on. I guess I didn't realize I would have to leave so many of those friends behind as I transitioned back to my old life.
The loss of some of these friends really does hurt. I wish as they unfriended me there was a comment card saying why did you choose to unfriend so and so. At least I could know what I did wrong or not did wrong to lose some special people. To be honest though in the real world without social media people often fade the same way sometimes with little to no reason at all so its just something I should accept. I reflect back to some of those memories and know we shared some great memories and I miss that time we had a friends.
I wonder if I could turn back time and juggle things a bit differently if things might be different now. I however wouldn't want to engage in a friendship with someone who just couldn't understand my lifestyle and how I do things. All of us are different we parent differently, we value and view things differently we also have different opinions. I think that is what makes us so special as friends because we can bring all sorts of difference to the table and shed light on things we might not normally see if we associated with all the same people who did everything the same as you. I know it would be boring and who wants boring!
A few weeks ago I decided not to cut my ties with those I still barely cling to as friends. I am trying hard to maintain those friendships the best that I can. I also however started a parent groups with some other special needs families so that we had some sort of common ground and a place to go where others understood. I have often heard that once you have a special needs child your friendships change and you might lose quiet a few whom you once thought you held super close. I see that is happening and I know I can't change how others view me as a friend and how I do things its just how I am and I am not going to change who I am to make others like me.
I am not going to lie when I saw those names not on my list anymore it was a bit sad. I guess that time together has come to an end and we have grown apart. I wish those friends well and will miss them dearly. I hope they cherish the memories we had made and never regret the friendships we shared. Maybe this is a sign to me to maybe make more time for my friends. To step back and say that no one can be friends with someone who does not make the effort. So I will be doing more to make that effort because it goes both ways.
I guess around the time of us dealing with H and his diagnosis and the focus of school, work and family caused me to neglect my friendships. I know I should have done more to let them know I was still there just a bit distant and preoccupied. I have only one or two friends out of that close circle and that makes me sad. I am so aware that life happens and we grow and change. Most of those in my circle are still military wives and have that along with their other obligations to focus on. I respect that and I need to understand that my life as a military wife is now over and I need to move on. I guess I didn't realize I would have to leave so many of those friends behind as I transitioned back to my old life.
The loss of some of these friends really does hurt. I wish as they unfriended me there was a comment card saying why did you choose to unfriend so and so. At least I could know what I did wrong or not did wrong to lose some special people. To be honest though in the real world without social media people often fade the same way sometimes with little to no reason at all so its just something I should accept. I reflect back to some of those memories and know we shared some great memories and I miss that time we had a friends.
I wonder if I could turn back time and juggle things a bit differently if things might be different now. I however wouldn't want to engage in a friendship with someone who just couldn't understand my lifestyle and how I do things. All of us are different we parent differently, we value and view things differently we also have different opinions. I think that is what makes us so special as friends because we can bring all sorts of difference to the table and shed light on things we might not normally see if we associated with all the same people who did everything the same as you. I know it would be boring and who wants boring!
A few weeks ago I decided not to cut my ties with those I still barely cling to as friends. I am trying hard to maintain those friendships the best that I can. I also however started a parent groups with some other special needs families so that we had some sort of common ground and a place to go where others understood. I have often heard that once you have a special needs child your friendships change and you might lose quiet a few whom you once thought you held super close. I see that is happening and I know I can't change how others view me as a friend and how I do things its just how I am and I am not going to change who I am to make others like me.
I am not going to lie when I saw those names not on my list anymore it was a bit sad. I guess that time together has come to an end and we have grown apart. I wish those friends well and will miss them dearly. I hope they cherish the memories we had made and never regret the friendships we shared. Maybe this is a sign to me to maybe make more time for my friends. To step back and say that no one can be friends with someone who does not make the effort. So I will be doing more to make that effort because it goes both ways.
Sunday, January 20, 2013
Through His Eyes
Looking back over this week we really had some big eye opening experiences. It really gave us the push we needed to stop and think about how every encounter is much more different for him than for us. Sunday we hit the road for Denton to get prepared for two days of testing. We spent time with family the night before and did what we could to help him settle into what was going to be a rough few days.
Monday was for sure going to prove a lot of things but mostly just how unique H really was. He is truly much smarter than we have given him credit for and yes we know he is smart but not in ways we had ever truly measured until then. Things he shouldn't be doing he could do but things on his level he struggled to accomplish. She again confirmed that we are dealing with some serious sensory and speech delay issues. I was sent home with a crazy amount of paper work and sad. That was short lived however. As we walked out to the car my phone rang. It was West Texas Rehab and they had been calling to invite us to join them Saturday night at their major fundraising event at the Abilene Civic Center. We had just been featured in the Abilene Reporter News for the services we receive there and so they wanted us to go on stage with our therapists during a portion of the telethon. I was crying. It was so awesome to be given an invitation like that after the morning we had.
We decided to take H over to Bass Pro to check out the fish and just walk around. It was right at that moment I choose to set back a bit on this outing and see things through his eyes. As we walked in he was in a bit of sensory overload and he just sort of stood there. Once we got going I just watched what H did and only stepped in when it was necessary. He stopped and touch just about everything, ran his hands across items, crawled along certain places. It was fun to see him enjoy a public place and not meltdown.
Tuesday morning we woke up to snow on the ground! It was a bit discouraging but still it was snow so we made the most of it even when it delayed us a bit. We even took H out in the snow were he clearly hated every second of it! After a slight delay at the office we got the rest of the testing underway. Today was a lot harder. We had to take more breaks and there were lots more melt downs. Dr. Johnson dug a bit deeper asked a whole lot of background questions. Stuff that we had never really brought up about H's birth because we figured it was not important suddenly had a lot of weight on what was going on.
After one of the last big melt down she had me change H's diaper and calm down a bit. We met with the head doctor and she observed him and asked even more questions. Suddenly we need to do a swallow study and meet with a neurologist. I fought back tears and just continued to listen. As we left her office we had yet another meltdown and went to finish up the testing, ask questions and get a prelim diagnosis. One of the diagnosis we were given has to officially be given by the neurologist. It is such a complicated name the only part I caught out of it was static. We gained the severe SID/SPD and severe speech delay. She also said we need to be in a full day PPCD program in the fall. This would be full day special education. He also needs to add ABA therapy and a few others to his list. That is finally when my emotions took over. I sort of had this anger come over me. Maybe it was lack of answers or just the words coming out of her mouth maybe it was all of it. She was advocating for him and I needed to be accepting of it. She will be included in our IEP meeting in the spring.
Hearing these things more and more keeps opening my eyes more. I try to be even more sensitive to his needs and experiences. I need to let go a bit more and just see things how he experiences them. While some might think he is being a bit wild and over the top it is usually his way of just adjusting to his environment. When he runs through a new place mostly because he is overwhelmed, when he starts touching everything its because he needs that sensory input, when he starts jumping on things or in place he needs that pressure to help him, when he is chewing on anything and everything its more sensory and anxiety coming into play. When he is flapping his hands, spinning around, flipping on lights he is stimming and this is all things that are just part of him now.
I will always be his biggest advocate. I will always do what i can to help him. I told his doctors I don't care about the costs of things at this point I want to get him the help he needs and put a price tag on it all later. I want to do all we can and honestly if that means we go without some luxury items we can do it. I will stay up late researching, and looking up all I can and going from various message boards seeking advice and reading what others in our situation are doing to keep on top of things. I think those around me especially his doctors and therapists see this and are more willing to go the extra mile for us when we need it. I am learning I will get out of this what I am willing to put into this. so far it is working in our favor.
Monday was for sure going to prove a lot of things but mostly just how unique H really was. He is truly much smarter than we have given him credit for and yes we know he is smart but not in ways we had ever truly measured until then. Things he shouldn't be doing he could do but things on his level he struggled to accomplish. She again confirmed that we are dealing with some serious sensory and speech delay issues. I was sent home with a crazy amount of paper work and sad. That was short lived however. As we walked out to the car my phone rang. It was West Texas Rehab and they had been calling to invite us to join them Saturday night at their major fundraising event at the Abilene Civic Center. We had just been featured in the Abilene Reporter News for the services we receive there and so they wanted us to go on stage with our therapists during a portion of the telethon. I was crying. It was so awesome to be given an invitation like that after the morning we had.
We decided to take H over to Bass Pro to check out the fish and just walk around. It was right at that moment I choose to set back a bit on this outing and see things through his eyes. As we walked in he was in a bit of sensory overload and he just sort of stood there. Once we got going I just watched what H did and only stepped in when it was necessary. He stopped and touch just about everything, ran his hands across items, crawled along certain places. It was fun to see him enjoy a public place and not meltdown.
Tuesday morning we woke up to snow on the ground! It was a bit discouraging but still it was snow so we made the most of it even when it delayed us a bit. We even took H out in the snow were he clearly hated every second of it! After a slight delay at the office we got the rest of the testing underway. Today was a lot harder. We had to take more breaks and there were lots more melt downs. Dr. Johnson dug a bit deeper asked a whole lot of background questions. Stuff that we had never really brought up about H's birth because we figured it was not important suddenly had a lot of weight on what was going on.
After one of the last big melt down she had me change H's diaper and calm down a bit. We met with the head doctor and she observed him and asked even more questions. Suddenly we need to do a swallow study and meet with a neurologist. I fought back tears and just continued to listen. As we left her office we had yet another meltdown and went to finish up the testing, ask questions and get a prelim diagnosis. One of the diagnosis we were given has to officially be given by the neurologist. It is such a complicated name the only part I caught out of it was static. We gained the severe SID/SPD and severe speech delay. She also said we need to be in a full day PPCD program in the fall. This would be full day special education. He also needs to add ABA therapy and a few others to his list. That is finally when my emotions took over. I sort of had this anger come over me. Maybe it was lack of answers or just the words coming out of her mouth maybe it was all of it. She was advocating for him and I needed to be accepting of it. She will be included in our IEP meeting in the spring.
Hearing these things more and more keeps opening my eyes more. I try to be even more sensitive to his needs and experiences. I need to let go a bit more and just see things how he experiences them. While some might think he is being a bit wild and over the top it is usually his way of just adjusting to his environment. When he runs through a new place mostly because he is overwhelmed, when he starts touching everything its because he needs that sensory input, when he starts jumping on things or in place he needs that pressure to help him, when he is chewing on anything and everything its more sensory and anxiety coming into play. When he is flapping his hands, spinning around, flipping on lights he is stimming and this is all things that are just part of him now.
I will always be his biggest advocate. I will always do what i can to help him. I told his doctors I don't care about the costs of things at this point I want to get him the help he needs and put a price tag on it all later. I want to do all we can and honestly if that means we go without some luxury items we can do it. I will stay up late researching, and looking up all I can and going from various message boards seeking advice and reading what others in our situation are doing to keep on top of things. I think those around me especially his doctors and therapists see this and are more willing to go the extra mile for us when we need it. I am learning I will get out of this what I am willing to put into this. so far it is working in our favor.
Thursday, January 10, 2013
Quality of Life
I swear this won't be a depressing and morbid entry. I know when most people hear this they begin to think of terminal illness. I swear none of us are dying! I just honestly never thought I would hear the phrase outside of that so when I heard it this morning I will say it caught me off guard and my mind suddenly wondered to the extremes!
This morning we had our follow up with the Neuropsychology Clinic. I wasn't sure if my stomach as in knots because of the stomach bug I acquired from work or because of the news I would be receiving today. I honestly think it was a little of both. After battling stomach issues all night I finally dragged myself out of bed and got my day going. H once again slept in his cozy tent so once I was somewhat ready for the day I got him up and ready. I have to say it was nice to see him finally get a good night rest last night. At least one of us did! He greeted me with such a pleasant smile and and friendly demeanor it made me feel just a little bit better. I look at his precious face scooped his little cheeks into my hands and kissed his nose and whispered " no matter what you are perfect and we love you."
We made our drive to the other side of town and the whole time I just wondered in my mind what they might have to say. H babbled in the back seat about things that we passed and about somethings I had no idea about. As we drew closer to the office I told him we would be talking to "Dr. Jen" and he would get to play his iPad while we talked. Our new thing is to prep him before each outing so that upon arrival he is not so freaked out at situations out of our normal routine.
Once inside I really did feel even more nervous and nauseated. Thankfully she was prompt and ready to take us back to her office. Once her doors closed I really had just prepared myself for whatever was said. When she offered to start with the good news I figured this was about to get interesting. His Autism scores where mild to moderate but she felt that something still wasn't right and wanted us to meet with a developmental pedi. I told her that we have that already squared away with our trip to Dallas coming up next week. She was thrilled to see I was proactive in all this and wants to make sure we can compare notes once we get some results. So while I am glad he isn't severe (which we all knew and assumed he wasn't) the answers started coming in.
However what she said next sort of hit me off guard. We all know H has some sensory issues but between what she has discussed with his OT and SP they agree its pretty severe. I wasn't sure exactly what to say. She mentioned when she sees it this severe that is it usually followed with some sort of Autism Spectrum Disorder. She kept talking there was mention of aides, smaller classrooms, more therapy etc. I just sort of zoned out I guess because suddenly she was looking at me and said "Lets discuss the quality of his life." Sort of started I asked" what do you mean?" She asked if we were prepared to take on his needs. I told her if i could sell of body parts to pay for any amount of therapy to help him be a successful young member of society I would do it in a heart beat! I said if that means he has to live under my room until he is old and grey then so be it. She smiled and said she was glad to hear me so upbeat about it. I guess the severity of his sensory issues and anxiety will cause him to have a harder time fitting in socially, being able to do new things and go places.
I had not even realized I was crying. Maybe it was because I was relieved for more answers or maybe it was because he has something that will forever effect his life and his day to day functions heck it was probably both. I told her our plans for Head Start in the fall she said that is the best setting for him because he can get all he needs in one place and the ratios will be so helpful to him. (Reminder, I need to make sure to help out when it comes time to do our IEP!) We discussed therapy in the meantime. I mentioned HIPPO and ABA. I had done my research and knew those were two big possibilities when it comes to helping children like H. I was ready to spew my information to her and fight this battle to get him into these therapies when instead she looked at me, smiled and said "Those are wonderful therapies and great ideas!" I was so surprised. She just like me wants to help him get everything he can. I cried again and pulled up pictures of H with his horse Slurpee. She was impressed and thrilled to see how well he was doing with it and knew this would be such a huge benefit. She said she would make a few phone calls and then get back to me with a more firm game plan. I LOVE IT!!! I told her I would bring up the form from TLC so she could look at it and fill it out so he could start therapy this weekend. I am waiting to hear back to see if she will let him use their program or if we must use another one.
H had about all he could handle, his behavior had shown some rapid deterioration and we needed to get him back on his schedule. After a few bites, tossing of toys and a head butt or two I scooped him up and got him on his way. Oh did I mention she said the chew tube was helping him maintain eye contact! Guess I will be buying stock in those! Anyways as we got out to the car I sat in the driver seat as a moment of nausea passed. I smiled and thought "Quality of life, you betcha, he will have the bets quality of life we can give him!"
I guess until you are in a situation that it directly effects you, you never realize how much a disability or disease can affect someone around you. I always associated hearing that phrase with someone who didn't have much longer to live not one who still a whole life ahead of him. I guess it makes sense when you think about it. I have to think about the quality of life for Sean with his health problems, while they are not major they do affect his daily life, and not think for the moment but for long term how they will effect who and what he is. How to help him overcome it and be productive and happy. With Hannah and her learning disabilities how while yes it is effecting her schooling now how will it effect her long term and her quality of life once she gets older. I always just focused on the here and now not the long term down the road possibilities. Hell if all of my children have to live under my roof until they are all old and grey to have the best quality of life I would do it! We would be just one big, happy, I am sure dysfunctional family but I wouldn't change it for the world!
This morning we had our follow up with the Neuropsychology Clinic. I wasn't sure if my stomach as in knots because of the stomach bug I acquired from work or because of the news I would be receiving today. I honestly think it was a little of both. After battling stomach issues all night I finally dragged myself out of bed and got my day going. H once again slept in his cozy tent so once I was somewhat ready for the day I got him up and ready. I have to say it was nice to see him finally get a good night rest last night. At least one of us did! He greeted me with such a pleasant smile and and friendly demeanor it made me feel just a little bit better. I look at his precious face scooped his little cheeks into my hands and kissed his nose and whispered " no matter what you are perfect and we love you."
We made our drive to the other side of town and the whole time I just wondered in my mind what they might have to say. H babbled in the back seat about things that we passed and about somethings I had no idea about. As we drew closer to the office I told him we would be talking to "Dr. Jen" and he would get to play his iPad while we talked. Our new thing is to prep him before each outing so that upon arrival he is not so freaked out at situations out of our normal routine.
Once inside I really did feel even more nervous and nauseated. Thankfully she was prompt and ready to take us back to her office. Once her doors closed I really had just prepared myself for whatever was said. When she offered to start with the good news I figured this was about to get interesting. His Autism scores where mild to moderate but she felt that something still wasn't right and wanted us to meet with a developmental pedi. I told her that we have that already squared away with our trip to Dallas coming up next week. She was thrilled to see I was proactive in all this and wants to make sure we can compare notes once we get some results. So while I am glad he isn't severe (which we all knew and assumed he wasn't) the answers started coming in.
However what she said next sort of hit me off guard. We all know H has some sensory issues but between what she has discussed with his OT and SP they agree its pretty severe. I wasn't sure exactly what to say. She mentioned when she sees it this severe that is it usually followed with some sort of Autism Spectrum Disorder. She kept talking there was mention of aides, smaller classrooms, more therapy etc. I just sort of zoned out I guess because suddenly she was looking at me and said "Lets discuss the quality of his life." Sort of started I asked" what do you mean?" She asked if we were prepared to take on his needs. I told her if i could sell of body parts to pay for any amount of therapy to help him be a successful young member of society I would do it in a heart beat! I said if that means he has to live under my room until he is old and grey then so be it. She smiled and said she was glad to hear me so upbeat about it. I guess the severity of his sensory issues and anxiety will cause him to have a harder time fitting in socially, being able to do new things and go places.
I had not even realized I was crying. Maybe it was because I was relieved for more answers or maybe it was because he has something that will forever effect his life and his day to day functions heck it was probably both. I told her our plans for Head Start in the fall she said that is the best setting for him because he can get all he needs in one place and the ratios will be so helpful to him. (Reminder, I need to make sure to help out when it comes time to do our IEP!) We discussed therapy in the meantime. I mentioned HIPPO and ABA. I had done my research and knew those were two big possibilities when it comes to helping children like H. I was ready to spew my information to her and fight this battle to get him into these therapies when instead she looked at me, smiled and said "Those are wonderful therapies and great ideas!" I was so surprised. She just like me wants to help him get everything he can. I cried again and pulled up pictures of H with his horse Slurpee. She was impressed and thrilled to see how well he was doing with it and knew this would be such a huge benefit. She said she would make a few phone calls and then get back to me with a more firm game plan. I LOVE IT!!! I told her I would bring up the form from TLC so she could look at it and fill it out so he could start therapy this weekend. I am waiting to hear back to see if she will let him use their program or if we must use another one.
H had about all he could handle, his behavior had shown some rapid deterioration and we needed to get him back on his schedule. After a few bites, tossing of toys and a head butt or two I scooped him up and got him on his way. Oh did I mention she said the chew tube was helping him maintain eye contact! Guess I will be buying stock in those! Anyways as we got out to the car I sat in the driver seat as a moment of nausea passed. I smiled and thought "Quality of life, you betcha, he will have the bets quality of life we can give him!"
I guess until you are in a situation that it directly effects you, you never realize how much a disability or disease can affect someone around you. I always associated hearing that phrase with someone who didn't have much longer to live not one who still a whole life ahead of him. I guess it makes sense when you think about it. I have to think about the quality of life for Sean with his health problems, while they are not major they do affect his daily life, and not think for the moment but for long term how they will effect who and what he is. How to help him overcome it and be productive and happy. With Hannah and her learning disabilities how while yes it is effecting her schooling now how will it effect her long term and her quality of life once she gets older. I always just focused on the here and now not the long term down the road possibilities. Hell if all of my children have to live under my roof until they are all old and grey to have the best quality of life I would do it! We would be just one big, happy, I am sure dysfunctional family but I wouldn't change it for the world!
Monday, December 31, 2012
Out with old in with the new!
Well this is it. The last day of 2012. Honestly it does not feel that 365 days have passed but they have. I recall thinking just last week that this was impossible to be preparing for Christmas and now here we sit about to embrace the new year that is suddenly upon us. Why is it when we are children the years seem to just DRAG by? I mean everything just seems to take forever and we never seem to appreciate that time we have? Then we become adults and if we blink just right the entire year went by and we missed most of it! I can't tell you how much I have tried to instill in my children that they need to enjoy this time they have take in every second of what they are experiencing because before they know it they will be saying the exact same things as I am.
This year has been one of our most eventful ones as of yet. This was the first full year that Chris was no longer military. This transition in and of itself was a tough one. I began a wonderful job doing what I love, but that was still such a huge change from what I am used to. We both became full time students and have found it to be a challenge but have found such reward from it. Life has continued to throw us curve balls but we seem to be hitting them left and right, some right out of the ballpark others have ended up base hits or fouls but we have done our best to overcome each obstacle in our path.
This next year will prove to be our toughest yet. This is not meant in a negative manner we just know going into 2013 we will have a lot more to face and in store for us. This upcoming year will be the year of answers. We will be starting off this New Year with answers to H and that itself is scary and a relief! We have big things on the agenda and hope to see them through. It will be exciting though. Sean will be in his last year of jr. high and Hannah in her last year of elementary school. See time is flying and I am just feeling like i can't keep up!
i won't be making any resolutions this year. They just seem to have no point to me. This year we are going to live for the moment and be happy for what we have and who we are. I am not going to stress over my weight, or how to look better. This is me and I am good with that. We aren't going to let anyone bring us down and remove those who bring nothing but negativity to our lives. This year we will make the most of it and do what we can to savor and enjoy each day we get. I am wanting to do what I can to "slow down" time so I don't sit here a year from now and say "Man where did the time go?"
This year is going to be more about family and less about the stress. I want to spend more time with my children, my sisters and the rest of my family. I want to do more with them and create new memories and traditions with them. It sounds like a busy year but hey I have 365 days to complete it so I think I can do it. I think it's time to change my outlook on life and think about more of what I have and want to have rather then what I don't have or never got. So out with the old and in with the new! Happy New Years everyone!
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