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.
Sunday, January 20, 2013
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!
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