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.
Friday, February 1, 2013
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!
Tuesday, December 25, 2012
So this is Christmas
Who else agrees we needed a bit more time to prepare for Christmas this year???? I am sitting here at a quarter to 6 in the evening and thinking really this was Christmas. The girls slept in till after 7am and H was up close to 8. Granted he was up late since he is not feeling well and he was also pretty anxious and trying to stim around the living room till midnight. The kids waited patiently to open gifts and have played well most of the day. God bless the creator of Legos! That is all they have done. I haven't heard a peep except for a few clomps down the stairs for some snacks or a drink.
We left around 11am to go pick up Sean at our designated half way mark. Of course what Christmas day roadtrip would not be complete with out a little winter weather. After a quick phone call to his step mom we agreed to go ahead that nothing seemed to be sticking. We get home opened the remainder of the gifts cooked a little and have relaxed. The kids kept to themselves and H floated between being with his siblings or being down here with his toys or watching TV.
Between the drive and sitting here I really started thinking about this Christmas compared to all the past ones. How many variances there was compared to the previous. There was so much more hoopla and excitement in the past. The house would be decked out and the tree covered in nice ornaments, the house was always full of guests and friends for parties and just random gatherings, going to parties and spending lots of time out of the house. This year we went to holiday parties but they were therapy related so of course those went fairly smooth. We had a few events on the books it just never panned out which is fine.
I started thinking on Thursday how we needed just a few more days between then and today because I was not ready for Christmas and I just didn't feel in the holiday spirit. I was hoping as the days drew closer to Christmas i would feel more prepared and ready for it but nothing. Sunday we picked up girls and I though surely this would get me in the spirit and boy did I try. We made ornaments, and paper chains, and listened to Christmas music. I was fighting to find that spirit I was lacking. Yesterday after a few errands I decided to get with the girls and bake some treats for our friends and family. I was getting closer but still really nothing. We dropped off the goodies and took a walk around the cul de sac to look at lights and ended up meeting some great new neighbors. I made a mental note to go walking down to that part of the neighborhood not only to mooch the fire pit and some good girl talk.
Last night the girls went to bed without a fuss and I got to playing Santa. Thank goodness nothing required assembly! Shortly after midnight the tree was set and I went to bed. I was sure the girls would be up with the sun begging to go see their gifts. We were up before them and just laid quietly to see how long it would take before we could bust one of them sneaking off downstairs to check out the goods. I have to admit I am a bit disappointed in not being to catch them in the act. The agreement was they opened one gift from us, one gift from Aunt Jordan and Jenny and their stocking and wait for the rest later. They complied without issue which was nice. I thought for sure with the snow we would see a bit more Christmas spirit and I would feel that it should be Christmas.
I have sat here trying to figure it out and I can't explain it. So this was our Christmas. I really want to spend it with family next year and by family I mean extended family. Now that Jordan and Ronnie have a baby I think it would nice to do more of a real big family thing like we did growing up. I am so hooked on that. I guess maybe I should let it go but I just can't. I know we kept it low key to make it easier on H and it was for the most part. I can't keep him sheltered and the more he is exposed the better training it is for him. Even just the little bit of extra stimulation tonight has caused him to go nuts. No light switch is safe, no block will go untossed, and no non food item will be missed. While it is hard to watch at the same time this is H and we love him and understand this is all part of it. So this was Christmas and what a great Christmas it was.
We left around 11am to go pick up Sean at our designated half way mark. Of course what Christmas day roadtrip would not be complete with out a little winter weather. After a quick phone call to his step mom we agreed to go ahead that nothing seemed to be sticking. We get home opened the remainder of the gifts cooked a little and have relaxed. The kids kept to themselves and H floated between being with his siblings or being down here with his toys or watching TV.
Between the drive and sitting here I really started thinking about this Christmas compared to all the past ones. How many variances there was compared to the previous. There was so much more hoopla and excitement in the past. The house would be decked out and the tree covered in nice ornaments, the house was always full of guests and friends for parties and just random gatherings, going to parties and spending lots of time out of the house. This year we went to holiday parties but they were therapy related so of course those went fairly smooth. We had a few events on the books it just never panned out which is fine.
I started thinking on Thursday how we needed just a few more days between then and today because I was not ready for Christmas and I just didn't feel in the holiday spirit. I was hoping as the days drew closer to Christmas i would feel more prepared and ready for it but nothing. Sunday we picked up girls and I though surely this would get me in the spirit and boy did I try. We made ornaments, and paper chains, and listened to Christmas music. I was fighting to find that spirit I was lacking. Yesterday after a few errands I decided to get with the girls and bake some treats for our friends and family. I was getting closer but still really nothing. We dropped off the goodies and took a walk around the cul de sac to look at lights and ended up meeting some great new neighbors. I made a mental note to go walking down to that part of the neighborhood not only to mooch the fire pit and some good girl talk.
Last night the girls went to bed without a fuss and I got to playing Santa. Thank goodness nothing required assembly! Shortly after midnight the tree was set and I went to bed. I was sure the girls would be up with the sun begging to go see their gifts. We were up before them and just laid quietly to see how long it would take before we could bust one of them sneaking off downstairs to check out the goods. I have to admit I am a bit disappointed in not being to catch them in the act. The agreement was they opened one gift from us, one gift from Aunt Jordan and Jenny and their stocking and wait for the rest later. They complied without issue which was nice. I thought for sure with the snow we would see a bit more Christmas spirit and I would feel that it should be Christmas.
I have sat here trying to figure it out and I can't explain it. So this was our Christmas. I really want to spend it with family next year and by family I mean extended family. Now that Jordan and Ronnie have a baby I think it would nice to do more of a real big family thing like we did growing up. I am so hooked on that. I guess maybe I should let it go but I just can't. I know we kept it low key to make it easier on H and it was for the most part. I can't keep him sheltered and the more he is exposed the better training it is for him. Even just the little bit of extra stimulation tonight has caused him to go nuts. No light switch is safe, no block will go untossed, and no non food item will be missed. While it is hard to watch at the same time this is H and we love him and understand this is all part of it. So this was Christmas and what a great Christmas it was.
Tuesday, September 18, 2012
Quirks
I was sitting today thinking about all the funny quirky things my kids do. Each is what makes them different an unique. I embrace each one as the individual that they are. The love they exude is just amazing. I know I talk a lot about H but really all my children are of course so very special to me and my life would not be complete.
Not long ago I was accused of favoring H and abandoning my others. I shouldn't have taken those rude things to heart because I know along with my family it is not the case. I have such an amazing support system they would stand by me and help me if I was falling.
Every little thing my kids do make them special and stand out. Sean loves to keep us laughing. Just recently he decided to speak in a English accent. He did it so perfectly.He is innovative and creative. I swear he will be an engineer or something along those lines one day. He is so smart and insightful. I know he has his moments but still they are moments that one day I will look back on and surly miss! Hannah is a pleaser and is very hard on herself. She has worked very hard these last few years to overcome a lot of obstacles and refuses to back down. While we know she is embarking on those pre teen years I know that her love and nurture will always be there. She is the little mom of our family. She looks after Emily, Daniel and H. Her maturity when it comes to them is just amazing. Ella is our drama queen. She lives up to the stereo type of being a "red head"! She is hardheaded and full fight. She was my baby for a long time and still lives of to the role of youngest but also totally fits the part of middle child. No one will ever take advantage of her because they will be afraid of her wrath lol!!
I love how completely different my kids are. They bring so much to this family that I am proud of. They have accepted their little brother as one of their own despite is many needs. Our family has raised some good kids some accepting kids at that. They make us proud every day.
I guess I should add some new and funny quirks I have noticed with H. He now hate the National Anthem and will dissolve into a puddle once he hears it! He can spout out several phrases now whether or not they apply to a given situation does not matter to me he still is saying them! Tonight he wanted to eat on the couch after 10 minutes of fighting and food throwing he walked back from the kitchen placed his food on the table and climbed up on the couch. He has to learn the hard way! If that means breaking a lamp and almost clearing my Scentsy warmer off the end table so be it! For the things that he has lost the ability to do he has gained new things.
These are the moments that make me miss my kids the most. I know though one day we are going to be in one city and under one roof.
Not long ago I was accused of favoring H and abandoning my others. I shouldn't have taken those rude things to heart because I know along with my family it is not the case. I have such an amazing support system they would stand by me and help me if I was falling.
Every little thing my kids do make them special and stand out. Sean loves to keep us laughing. Just recently he decided to speak in a English accent. He did it so perfectly.He is innovative and creative. I swear he will be an engineer or something along those lines one day. He is so smart and insightful. I know he has his moments but still they are moments that one day I will look back on and surly miss! Hannah is a pleaser and is very hard on herself. She has worked very hard these last few years to overcome a lot of obstacles and refuses to back down. While we know she is embarking on those pre teen years I know that her love and nurture will always be there. She is the little mom of our family. She looks after Emily, Daniel and H. Her maturity when it comes to them is just amazing. Ella is our drama queen. She lives up to the stereo type of being a "red head"! She is hardheaded and full fight. She was my baby for a long time and still lives of to the role of youngest but also totally fits the part of middle child. No one will ever take advantage of her because they will be afraid of her wrath lol!!
I love how completely different my kids are. They bring so much to this family that I am proud of. They have accepted their little brother as one of their own despite is many needs. Our family has raised some good kids some accepting kids at that. They make us proud every day.
I guess I should add some new and funny quirks I have noticed with H. He now hate the National Anthem and will dissolve into a puddle once he hears it! He can spout out several phrases now whether or not they apply to a given situation does not matter to me he still is saying them! Tonight he wanted to eat on the couch after 10 minutes of fighting and food throwing he walked back from the kitchen placed his food on the table and climbed up on the couch. He has to learn the hard way! If that means breaking a lamp and almost clearing my Scentsy warmer off the end table so be it! For the things that he has lost the ability to do he has gained new things.
These are the moments that make me miss my kids the most. I know though one day we are going to be in one city and under one roof.
Saturday, September 1, 2012
Yellow
Today's blog is brought to you by the color yellow! This morning has been all about the word yellow. EVERYTHING is YELLOW! I think it is pretty funny because he was on the phone with my sister and she would say something and the response was yellow. I walked into the kitchen asked if he wanted some milk and his response was "yellow". He climbed up on top of his cozy cab and turned the light and fan off and on shrieking "yellow", "yellow", "yellow"! I just got up and realized he also reset our thermostat and daddy would be proud he had it set for 85 in here!
I am glad I can sit and laugh at his quirks. I know some days it brings me down but lately especially today the make me laugh. With him having Echolalia he will just randomly throw out phrases or words that he has heard at some point. Sometimes they just come out of no where. Even though he won't often answer me or if he does it is something that makes no sense or out of left field I ask him because he has to work on learning the give and take of conversation.
I can ask him what he wants to do today and his off the wall response makes me smile. I said lets go play legos and he says "Yellow momma" I gather up all the yellow legos and show him that yellow actually has a meaning besides being his favorite thing to say over and over. I get the yellow balls we throw them in his ball pit and let him know that those balls are yellow. Every day and everything is a learning experience for us now. Good thing that degree of mine is in early childhood education. I was beginning to think it might go to waste ha ha!
Some people don't understand why I say he is non verbal. I say that only because 9 out of 10 times if he was asked a question he would either babble an answer, respond with something that was irreverent and on that 10th time he would say or respond with an appropriate response. I mean unless you folks want to qualify him as verbal when he says his name is Schatzie or of course Yellow. Seeing has he does not know his name or who he is maybe I could switch his name to Yellow. Yellow Tyler Thomas!
I do love that he has Echolalia it gives me hope for speech later on. I love hearing his voice even if that means I have to hear yellow or egg and of course momma over and over and over. Oh ya right now everything is EGG! I pulled out the eggs however to make him some and he of course he doesn't acutally want the the eggs. I mean of course what sense would that make! So every time I go in the kitchen he tells me egg.
Well it's time for Mr. Yellow and Mr. Egg to head off for a nap. Maybe he will come up with some new words when he wakes up. Maybe he will wake up in a better mood. Talk about crabby pants. I gave him a pb cookie so hopefully that perks him up. Don't judge at least the kid is eating!
I am glad I can sit and laugh at his quirks. I know some days it brings me down but lately especially today the make me laugh. With him having Echolalia he will just randomly throw out phrases or words that he has heard at some point. Sometimes they just come out of no where. Even though he won't often answer me or if he does it is something that makes no sense or out of left field I ask him because he has to work on learning the give and take of conversation.
I can ask him what he wants to do today and his off the wall response makes me smile. I said lets go play legos and he says "Yellow momma" I gather up all the yellow legos and show him that yellow actually has a meaning besides being his favorite thing to say over and over. I get the yellow balls we throw them in his ball pit and let him know that those balls are yellow. Every day and everything is a learning experience for us now. Good thing that degree of mine is in early childhood education. I was beginning to think it might go to waste ha ha!
Some people don't understand why I say he is non verbal. I say that only because 9 out of 10 times if he was asked a question he would either babble an answer, respond with something that was irreverent and on that 10th time he would say or respond with an appropriate response. I mean unless you folks want to qualify him as verbal when he says his name is Schatzie or of course Yellow. Seeing has he does not know his name or who he is maybe I could switch his name to Yellow. Yellow Tyler Thomas!
I do love that he has Echolalia it gives me hope for speech later on. I love hearing his voice even if that means I have to hear yellow or egg and of course momma over and over and over. Oh ya right now everything is EGG! I pulled out the eggs however to make him some and he of course he doesn't acutally want the the eggs. I mean of course what sense would that make! So every time I go in the kitchen he tells me egg.
Well it's time for Mr. Yellow and Mr. Egg to head off for a nap. Maybe he will come up with some new words when he wakes up. Maybe he will wake up in a better mood. Talk about crabby pants. I gave him a pb cookie so hopefully that perks him up. Don't judge at least the kid is eating!
Subscribe to:
Posts (Atom)