After a few nights of the blanket we are seeing progress and a pattern. Once we give him the Melatonin about 30 min later he is done. He has to however fall asleep on the couch. Not ideal but honestly it is sleep from about 9:30pm to midnight. Its the two hours in between that is not fun for any of us but around 2am he is good till 8am. The blanket has made a huge difference. It took a little getting used to but now he seems happy with what he has.
Tuesday we got some news that floored me, let me speechless. We have a friend on the East Coast who has a son Landon who has Autism. They have a facebook page Paws 4 Landon-https://www.facebook.com/PAWS4Landon. The Clark family is comprised of some pretty amazing people. Jaime and Chris used to fight fires together and just recently regained contact with one another. I was shown their Facebook page through Chris and felt for this family. Finally after a few weeks of looking at the page there was a post that Michelle put up and I commented. It didn't take long for a friendship to form. Suddenly I didn't feel so alone. Shortly after that I came across her friend Christine who is in El Paso and her husband is Active Duty Army. I feel now like I have known these ladies forever! Just recently I became friends with Robin Tenace who has now proven to be a savior. Our children are all on the spectrum and all dealing with similar things. Despite the miles between us all we have just formed a bond. It has made me a little less stressed and little more at ease that I have people I can count on.
I never knew how true those words would be until my lunch that day. Monday after my blog went up some friends and family came through in ways that warmed my heart. Seeing as insurance for now won't cover therapy or items we need for H we have to pay for all these things out of pocket, rely on state funding and donors. The message I received on Facebook caught me off guard, took my breath away and left me in tears of happiness! Michelle and Jaime Clark had Robin make a weighted blanket with the correct amount of weight for H. It will be Buzz Lightyear! How awesome is that?! I called Chris right away and we both just cried. Finally our boy was going to sleep well with an item as simple as a blanket. We are on our way now!
This morning I got a call from WTRC about a anonymous donor who wanted to make a blanket for us. I told them the amazing story of our friends and asked that the blanket go to another family with a child like H. Again my heart was smiling. God is good. There are still wonderful caring people out there who will help a perfect stranger. It makes you put things in perspective. I was given this challenge because he knows I can handle it. I am facing this challenge head on and going to be the biggest advocate for my baby that I can be. We are going to take all these road blocks and turn them into speed bumps. We are full steam ahead and not going to stop.
For those that had offered to help the items we are still needing to work on getting are the lap pad which we want to order through Robin Tenace and those 25.00. The lap pad would be used while H is sitting to help keep him from getting all wiggly and keep him calm sort of like the blanket just not as big and easier to tote around. The other thing we are in desperate need of his a product from Z Vibe.http://southpawenterprises.com/OralMotor/DZ-VibeTipAssortmentKit.asp . This will help with his issues with his oral fixations. The pressure he can get the chewing will help him with anxiety and over stimulation. These items can be essential for him to not go on overload. Eventually we would like to get him a weighted vest but the ones we have come across start at around 170.00!! That is just not in our budget and we are hoping that if we do qualify for some assistance from the state we can purchase these items to help him.
For now we can do small things to help him such as wearing hats and sun glasses when we go into stores with heavily used florescent lights to help keep from being over stimulated. He likes to look at the lights but to him the lights blink which causes him to lose control. So when he is at school or out in places like this we will wear sunglasses and hats. He likes both ok but hopefully with regular use he will realize how much wearing these help him. We will continue with his back pack filled with things that go such as trains and cars. Anything that spins will keep his attention forever. Since he loves vibration we will use the toothbrushes that vibrate and see what toys we can find that do the same.
I find myself daily educating myself on what we have on our hands. I am going to order a tool kit from Autism Speaks tomorrow with all sorts of info we need to help better care for our son, what therapies will work best with his condition and just what to expect sort of. I guess its the instruction manual they forgot to give us at the hospital when we brought him home ha ha! I have also found a few support groups on Facebook that are loaded with helpful information and people asking questions of things I have not even thought of but know they totally apply to us! I really feel on top of things and like I have brought my A game! Lets just hope we keep it that way.
Thank you everyone for all your kind words, love and support. Chris, I and the kids could not make it through this without all of you. We are so blessed to have such amazing people in our lives who will reach out. You warm my heart and make me want to do what I can to pay it forward. Hopefully soon I will find ways to do so. I can never say how much we appreciate all of you and that your love and support are what gives us hope we are going to be able to tackle this and give H the best possible opportunities we can!
Last night on the couch with his loaner blanket. |
I guess he had a rough day judging by his hand lol. Again though he rests peacefully now that he has what he needs! |
I guess his chew toys are not enough so the poor mermaid gets it! |
Sitting on the back of one of the trucks. This is the place he loves to be every Tuesday night |
Wanting to be just like daddy. He loves his wearing daddies glasses |
He is so excited to hang out with his brother and sisters. They had so much fun today at the pool. |
Testing the water. He would rather just splash for now. |
He is just going to watch and learn how to swim like his brother. |
"Here Sean let me splash your face with some water." |
Showing us how much he loves his doggy. They like to hug. |
Horse playing with his pup. This dog is so tolerant of his antics. They are like two peas in a pod. |
Friday, June 8, 2012
Adventures in Diaper Boy
This title is brought to you by my humors son Sean. Tonight before our family dinner. H was running around climbing onto things knocking things over and getting all sorts of excited his siblings are all under one roof, that he just decided to title his life the adventures of Diaper boy and mom lady. Yep I am mom lady. Cleaver little nickname huh? I guess he has a point this is pretty much an adventure and I am just his sidekick along for the ride.
Backing up a bit since I got a wee bit ahead of myself. Tuesday H had his weekly ECI appointment. Since I am working when they come work with him I left a nice long note about progress, this way when she comes she can talk to his teacher and get straight to work. The note consisted of his progress, new concerns, what we are trying and what can we do to help. He was having some problems with aggression that day along with some meltdowns. Staci gave me a list of things to start doing, keep doing and what we want to try. We have been told to get a small trampoline to help him jump his aggression and anxiety out, weighted blanket and vest for calming his anxiety, we need to keep up with the things that vibrate such as his toothbrush, the soft silky things also help sooth and calm him.
They have also decided that they are going increase his time to 45 min a week. We are still awaiting when speech therapy will start. I am hoping next week we will know. Next Wednesday I have a meeting with his coordinator. I am going to bring up a few things that I keep forgetting. At least I know if I write it down Staci looks at it and addresses it. I am so glad to have such a great team all on top of his care.
His apt at Cook's Childrens Hospital in Ft. Worth went awesome! We saw Dr. Pfaff in Pulmonolgy and he is the most amazing specialist I have ever come across. He has such a calming presence and just this way about him that H was totally calm. He did everything he needed to do with H without him freaking out on him. Chris and I sat there with our jaws on the floor. Where had this man been all our lives? The added bonus of our new doctor is that he does have a office out here in Abilene so from here on out as long as he is out here we can see him at his Abilene location. SCORE!
We spent about 20 minutes discussing his past history with breathing problems. I was prepared for him to say something along the lines of " he is fine no need to worry" or " I am sorry I have no idea what the problem is with your son." Well we got the total opposite. He was very concerned and felt sorry for H. He has educated us on Abuterol and Xopenex and we now realize we had been under medicating our child. Abuterol is much better for him but, since he knows our hesitations and H's situation he gave us some tips and tricks to help fight the side effects that it can cause. He also knows that H does not want to be stuck to a nebulizer all the time so most of his meds can be done via his inhaler and chamber and only needing the nubulizer if he is really having a hard time. Another huge bonus for us. Like I said before we got 2 years worth of answers in 20 minutes. I left feeling this huge sigh of relief and knew that things where going to be just fine.
We got to Dallas had a bit to eat and headed out to pick up the kids. I kid no you not the girls packed every last thing that they have ever owned! The truck was pretty weighed down lol. I was pretty excited to see them and of course H was very happy to see his sisters. He can say Hannah now and well he refers to his siblings as Hannah ha ha. After we got the girls we headed out to pick up Sean. Thankfully he packed lite. We packed into the truck and made our way back to Abilene. We got home around 6:30 did a quick food run made some pizza and called it an early night. Hey have I mentioned how much stuff the girls brought?! Goodness it was insane to find a place to put everything.
It has been great to so far with all the kids. They had a baby sitter today but next week they get shipped off to the Youth Center on base. Ella will go to day camp all day and Sean and Hannah will go to the Tween Wing. They will get to do all sorts of things and I know they have field trips I just have to keep an eye out so they can do them. Ella wants to do soccer camp and I think Sean wants to do basketball camp but I am pretty sure that starts next week. I know the YC will keep them busy so I am not worried.
This weekend we are probably heading to the pool tomorrow. I know I must be brave to take 4 kids to the pool. Tomorrow night we have a pending BBQ with friends. Sunday is family day and hopefully meeting up with the Westbrook's. I went from quiet weekends of hanging around the house to now needing to find some things to do to keep them all from climbing the walls. I am sure it will be just fine though.
Well you know it is summer when you look up see that it's 8pm and dinner has not been made. The kids are making sandwiches and then winding down for bed. I love seeing them all at the table together. For now my heart is happy and there is a big ole smile on my face!
Backing up a bit since I got a wee bit ahead of myself. Tuesday H had his weekly ECI appointment. Since I am working when they come work with him I left a nice long note about progress, this way when she comes she can talk to his teacher and get straight to work. The note consisted of his progress, new concerns, what we are trying and what can we do to help. He was having some problems with aggression that day along with some meltdowns. Staci gave me a list of things to start doing, keep doing and what we want to try. We have been told to get a small trampoline to help him jump his aggression and anxiety out, weighted blanket and vest for calming his anxiety, we need to keep up with the things that vibrate such as his toothbrush, the soft silky things also help sooth and calm him.
They have also decided that they are going increase his time to 45 min a week. We are still awaiting when speech therapy will start. I am hoping next week we will know. Next Wednesday I have a meeting with his coordinator. I am going to bring up a few things that I keep forgetting. At least I know if I write it down Staci looks at it and addresses it. I am so glad to have such a great team all on top of his care.
His apt at Cook's Childrens Hospital in Ft. Worth went awesome! We saw Dr. Pfaff in Pulmonolgy and he is the most amazing specialist I have ever come across. He has such a calming presence and just this way about him that H was totally calm. He did everything he needed to do with H without him freaking out on him. Chris and I sat there with our jaws on the floor. Where had this man been all our lives? The added bonus of our new doctor is that he does have a office out here in Abilene so from here on out as long as he is out here we can see him at his Abilene location. SCORE!
We spent about 20 minutes discussing his past history with breathing problems. I was prepared for him to say something along the lines of " he is fine no need to worry" or " I am sorry I have no idea what the problem is with your son." Well we got the total opposite. He was very concerned and felt sorry for H. He has educated us on Abuterol and Xopenex and we now realize we had been under medicating our child. Abuterol is much better for him but, since he knows our hesitations and H's situation he gave us some tips and tricks to help fight the side effects that it can cause. He also knows that H does not want to be stuck to a nebulizer all the time so most of his meds can be done via his inhaler and chamber and only needing the nubulizer if he is really having a hard time. Another huge bonus for us. Like I said before we got 2 years worth of answers in 20 minutes. I left feeling this huge sigh of relief and knew that things where going to be just fine.
We got to Dallas had a bit to eat and headed out to pick up the kids. I kid no you not the girls packed every last thing that they have ever owned! The truck was pretty weighed down lol. I was pretty excited to see them and of course H was very happy to see his sisters. He can say Hannah now and well he refers to his siblings as Hannah ha ha. After we got the girls we headed out to pick up Sean. Thankfully he packed lite. We packed into the truck and made our way back to Abilene. We got home around 6:30 did a quick food run made some pizza and called it an early night. Hey have I mentioned how much stuff the girls brought?! Goodness it was insane to find a place to put everything.
It has been great to so far with all the kids. They had a baby sitter today but next week they get shipped off to the Youth Center on base. Ella will go to day camp all day and Sean and Hannah will go to the Tween Wing. They will get to do all sorts of things and I know they have field trips I just have to keep an eye out so they can do them. Ella wants to do soccer camp and I think Sean wants to do basketball camp but I am pretty sure that starts next week. I know the YC will keep them busy so I am not worried.
This weekend we are probably heading to the pool tomorrow. I know I must be brave to take 4 kids to the pool. Tomorrow night we have a pending BBQ with friends. Sunday is family day and hopefully meeting up with the Westbrook's. I went from quiet weekends of hanging around the house to now needing to find some things to do to keep them all from climbing the walls. I am sure it will be just fine though.
Well you know it is summer when you look up see that it's 8pm and dinner has not been made. The kids are making sandwiches and then winding down for bed. I love seeing them all at the table together. For now my heart is happy and there is a big ole smile on my face!
Monday, June 4, 2012
Hey There!
Wow I think I just went a week without an update! I guess life has been busy but not busy enough for a normal update. Of course this new consistent schedule I thought I was getting didn't happen so life has been a bit more hectic again. Also I am doing what I can to spend my time with H working with him doing the stuff his ECI therapist is doing to get him the extra help that push he really needs.
While we were at home for the 4 days I fell into a place I am not proud to say I hit. I was so down and feeling hopeless and frustrated I was really afraid of what was going to become of me. I was so angry and lost. I could not wait for nap time to roll around so that I could sit down and have some time to decompress. I realized at that point that staying at home with H would not be good for us right now. While I can work with children all day long and I have a fair amount of patience, the demands and needs of H are something that I need help with and fear I would not have just being at home with him all day. He needs to be around others and in a different setting. I was really quiet relieved when school rolled back around on Tuesday.
Last week we saw some progress along with some set backs. His morning teacher was moved to another room and they placed a new teacher in his room. His new teacher is great and trust me she was well warned of his issues. She handled him like a champ! Kellie trust me that Lobster Rita was well earned my dear! However with the changes with a teacher and now my schedule changed, oh and lets not forget our 4 day weekend, we saw some new issues come about. We will celebrate the no biting, ok well he bit once but it was so not a big deal we are just going to shrug that one off. Though the meltdowns, shuddering and the aggression of pushing and hitting are needing to now be addressed.
Tuesday morning I went in cringing praying that this new schedule, new teacher and odd week would just not phase him. Tuesday went pretty good. Sigh! Wednesday was about the same just lots of aggression. Maybe this week was not going to be as bad as I expected it to be. Gosh did I say that out loud?! Thursday we hit the downhill slide. It started off taking the dogs to the vet to go get groomed. That flipped him out when they took his beloved Schatzie away. The ball of fluff cat toy they gave him actually worked well. It was at that moment I realized no matter what those dogs can not leave our family and of course B! YIKES! The day was a total flop. He flipped out all day, hit kids, shoved them and just kept throwing himself to the ground. Friday was that but much worse. It was a relief oddly to be able to leave early.
So I am making a list of things for his therapist tomorrow. What is working, what is not and new concerns. We have discovered a couple of things that we are realizing while at first were cute are now a bit alarming. We thought his food rage was something cute he would do but now realize he will stop stare off and ball up his fists and shake them. Sometimes his whole body will tremble sometimes just his hands and arms. Sometimes he will let out these high pitched shrieks others he is just quiet. He has also become the stripper. If he is mad the clothes are coming off. Dinner and a show anyone??! I am hoping for a call after I get out of work tomorrow to go over stuff and see where to go from here. I think speech starts tomorrow however I am not sure. I guess we will see.
Tonight we are starting Melatonin to help get him to relax and rest. I am desperate to find a way for him to wind down and get some decent sleep. He was crashed out by 8:30. This is a first for us. It was nice to have the last few hours to relax and just do what we needed to do and not have to worry about what H was getting into and preventing meltdowns. However I just came upstairs for bed and he was sitting up in his bed ready to go. Thankfully now he is at the foot of our bed asleep. I do chalk a bit of this up to him having croup but the coughing has not been to bad tonight.
Thursday is a big day for us for two reasons. We make our trek to Ft. Worth to meet with Dr Pfaff, his pulmonologist. I am hoping for some great answers and some big relief. If the rumors I hear are true this should be our only apt in Ft. Worth and the rest will be done here in Abilene. This would be a huge help for us quiet honestly. This is also the day we pick up the kids for the summer! I get to pick up my 7th grader, 4th grader and 2nd grader! Yea that is right I got some pretty big kiddos now. Sean and Hannah's birthdays are just around the corner and I am sad and happy all at the same time. A 10 and 12 year old! WHAT! Who said they could grow up?! I am hoping they are just as excited as I am for this trip. I miss my babies like crazy!
I am sure there will be an update Thursday evening as to what happened at Cook's and how wonderful it is going with the kiddos. I am again just so thankful for our friends and family who are showing so much love and support right now. The more answers and help we get the more and more confident I feel that H will get the best opportunities possible! We are still awaiting to hear from Dr. Rogers in Lubbock this still could take a few weeks but we are hopefully that we can get an apt soon and go from there.
As for the plans to move those are now all just plans said aloud. We want to go back home but there are so many variables that are coming into play. We have to make the most rational and reasonable choices. I want to be back where my roots are, where my family and my friends are. I am sure it will happen but it is not wise or mature to leave where we are at with no firm idea of where we would find work, live or go to school. Once we had more firm plans and details we can make this plan take a bit of action. We still have a lease until September so we have some time to try but of course if nothing surfaces between now and then we will remain here doing what we are doing. I have found a great support system out here and am so thankful for them because without them right now I would be lost. They have helped me make this place a home when I said it never would. It has made a world of difference. Thanks a million you guys.
Well the Melatonin has kicked in for both of my boys so I guess I am just going to close this up and call it a night. I started this a few hours ago but got so excited about my extra free time I got a wee bit side tracked. Hope you enjoy! Good night all
While we were at home for the 4 days I fell into a place I am not proud to say I hit. I was so down and feeling hopeless and frustrated I was really afraid of what was going to become of me. I was so angry and lost. I could not wait for nap time to roll around so that I could sit down and have some time to decompress. I realized at that point that staying at home with H would not be good for us right now. While I can work with children all day long and I have a fair amount of patience, the demands and needs of H are something that I need help with and fear I would not have just being at home with him all day. He needs to be around others and in a different setting. I was really quiet relieved when school rolled back around on Tuesday.
Last week we saw some progress along with some set backs. His morning teacher was moved to another room and they placed a new teacher in his room. His new teacher is great and trust me she was well warned of his issues. She handled him like a champ! Kellie trust me that Lobster Rita was well earned my dear! However with the changes with a teacher and now my schedule changed, oh and lets not forget our 4 day weekend, we saw some new issues come about. We will celebrate the no biting, ok well he bit once but it was so not a big deal we are just going to shrug that one off. Though the meltdowns, shuddering and the aggression of pushing and hitting are needing to now be addressed.
Tuesday morning I went in cringing praying that this new schedule, new teacher and odd week would just not phase him. Tuesday went pretty good. Sigh! Wednesday was about the same just lots of aggression. Maybe this week was not going to be as bad as I expected it to be. Gosh did I say that out loud?! Thursday we hit the downhill slide. It started off taking the dogs to the vet to go get groomed. That flipped him out when they took his beloved Schatzie away. The ball of fluff cat toy they gave him actually worked well. It was at that moment I realized no matter what those dogs can not leave our family and of course B! YIKES! The day was a total flop. He flipped out all day, hit kids, shoved them and just kept throwing himself to the ground. Friday was that but much worse. It was a relief oddly to be able to leave early.
So I am making a list of things for his therapist tomorrow. What is working, what is not and new concerns. We have discovered a couple of things that we are realizing while at first were cute are now a bit alarming. We thought his food rage was something cute he would do but now realize he will stop stare off and ball up his fists and shake them. Sometimes his whole body will tremble sometimes just his hands and arms. Sometimes he will let out these high pitched shrieks others he is just quiet. He has also become the stripper. If he is mad the clothes are coming off. Dinner and a show anyone??! I am hoping for a call after I get out of work tomorrow to go over stuff and see where to go from here. I think speech starts tomorrow however I am not sure. I guess we will see.
Tonight we are starting Melatonin to help get him to relax and rest. I am desperate to find a way for him to wind down and get some decent sleep. He was crashed out by 8:30. This is a first for us. It was nice to have the last few hours to relax and just do what we needed to do and not have to worry about what H was getting into and preventing meltdowns. However I just came upstairs for bed and he was sitting up in his bed ready to go. Thankfully now he is at the foot of our bed asleep. I do chalk a bit of this up to him having croup but the coughing has not been to bad tonight.
Thursday is a big day for us for two reasons. We make our trek to Ft. Worth to meet with Dr Pfaff, his pulmonologist. I am hoping for some great answers and some big relief. If the rumors I hear are true this should be our only apt in Ft. Worth and the rest will be done here in Abilene. This would be a huge help for us quiet honestly. This is also the day we pick up the kids for the summer! I get to pick up my 7th grader, 4th grader and 2nd grader! Yea that is right I got some pretty big kiddos now. Sean and Hannah's birthdays are just around the corner and I am sad and happy all at the same time. A 10 and 12 year old! WHAT! Who said they could grow up?! I am hoping they are just as excited as I am for this trip. I miss my babies like crazy!
I am sure there will be an update Thursday evening as to what happened at Cook's and how wonderful it is going with the kiddos. I am again just so thankful for our friends and family who are showing so much love and support right now. The more answers and help we get the more and more confident I feel that H will get the best opportunities possible! We are still awaiting to hear from Dr. Rogers in Lubbock this still could take a few weeks but we are hopefully that we can get an apt soon and go from there.
As for the plans to move those are now all just plans said aloud. We want to go back home but there are so many variables that are coming into play. We have to make the most rational and reasonable choices. I want to be back where my roots are, where my family and my friends are. I am sure it will happen but it is not wise or mature to leave where we are at with no firm idea of where we would find work, live or go to school. Once we had more firm plans and details we can make this plan take a bit of action. We still have a lease until September so we have some time to try but of course if nothing surfaces between now and then we will remain here doing what we are doing. I have found a great support system out here and am so thankful for them because without them right now I would be lost. They have helped me make this place a home when I said it never would. It has made a world of difference. Thanks a million you guys.
Well the Melatonin has kicked in for both of my boys so I guess I am just going to close this up and call it a night. I started this a few hours ago but got so excited about my extra free time I got a wee bit side tracked. Hope you enjoy! Good night all
Subscribe to:
Posts (Atom)