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!
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| Last night on the couch with his loaner blanket. |
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| I guess he had a rough day judging by his hand lol. Again though he rests peacefully now that he has what he needs! |
Monday, June 25, 2012
The results are in
Today was a big day. Hunter had his first apt with WTRC and it was very productive. We spent and hour talking to Speech and OT another with another specialist. In one short hour we learned a lot about our son. I seem to say that a lot lately but this time we really did learn a lot. Some good some not so good.
OT came in and did some work with him while we talked with Speech and the other specialist. Now mind you its 1pm this child has not napped so I truly expected the worst. The fact that he had been on a random biting spree today too was not comforting me in how this appointment would go. He sat at the table with his OT and they got straight to work. While he has great gross motor skills he is raising lots of flags with his social emotional, sensory, speech and comprehension. We for now are possibly nixing Dr. Rodgers in Lubbock and seeing more therapists and help at WTRC.
We will be doing ABA, speech and OT. There is actually other things that we will be testing and adding but my brain just went to mush hearing all this. These words are so definite and official. It is all on paper now and on his records. There was lots to take in but it is all in the best interest of making him function better and be a happier more adjusted child. The positive to today was getting to use a weighted blanket to see how it works so once we can afford one we can buy one for him to use.
Later this week will get get a call for when he will start all this therapy and we will also get a copy of these records to have and once I get them I will let everyone know exactly what is going on. I figured to let everyone know for now what is going on this should suffice.
I am up to my ears in paper work to apply for aide from the state. Sadly our insurance is not going to cover this so we are looking for grants from WTRC and help from the state to cover all this. I have spent the last 4 hours filling out this stuff instead of hanging out with my family. It really bothered me tonight. Wednesday I promised the kids a trip to the pool because I feel so bad that they didn't get my full attention tonight. These kids have been troopers! They love their brother and want to help and I am beyond thankful for this. So I am going to wrap up this blog so I can finish filling out paper work. Look for a more in depth update here in a day or two!
OT came in and did some work with him while we talked with Speech and the other specialist. Now mind you its 1pm this child has not napped so I truly expected the worst. The fact that he had been on a random biting spree today too was not comforting me in how this appointment would go. He sat at the table with his OT and they got straight to work. While he has great gross motor skills he is raising lots of flags with his social emotional, sensory, speech and comprehension. We for now are possibly nixing Dr. Rodgers in Lubbock and seeing more therapists and help at WTRC.
We will be doing ABA, speech and OT. There is actually other things that we will be testing and adding but my brain just went to mush hearing all this. These words are so definite and official. It is all on paper now and on his records. There was lots to take in but it is all in the best interest of making him function better and be a happier more adjusted child. The positive to today was getting to use a weighted blanket to see how it works so once we can afford one we can buy one for him to use.
Later this week will get get a call for when he will start all this therapy and we will also get a copy of these records to have and once I get them I will let everyone know exactly what is going on. I figured to let everyone know for now what is going on this should suffice.
I am up to my ears in paper work to apply for aide from the state. Sadly our insurance is not going to cover this so we are looking for grants from WTRC and help from the state to cover all this. I have spent the last 4 hours filling out this stuff instead of hanging out with my family. It really bothered me tonight. Wednesday I promised the kids a trip to the pool because I feel so bad that they didn't get my full attention tonight. These kids have been troopers! They love their brother and want to help and I am beyond thankful for this. So I am going to wrap up this blog so I can finish filling out paper work. Look for a more in depth update here in a day or two!
Saturday, June 23, 2012
Rest in peace baby brother...........
Today March 27, 2009 at around 12:45pm I recieved a phone call that will forever change my life. Today was suppose to be a happy day my little sister turned 23. But God had something else planned that day. Jenny did turn 23 and all was just fine until 12:45pm. I was just getting ready to go on my break I was cleaning up from lunch and Heather walks into my room. All she could say was say to me was "Jamie you have an emergency call". I normally never get calls at work I never give out the number actually. I also realized that my battery was dead in my cell phone so no one would have been able to reach me anyways. I walked out to the hall and I calmly said "this is Jamie" I was not prepared to hear my Aunt Karen's voice on the other end of the line. I actually expected it to maybe be the kids school or even my mother but not my Aunt Karen. The only words I can hear and recall where "Jamie Alex is dead, he died." I think I slid to the floor crumbled in a heap screaming no no no. I forgot all about the phone call and everything else and just cried and cried. I didn't know what to think or do or say. I was numb so totally numb. I recall Heather mentioning that my Aunt Ann was on the way or something to that effect. The next few minutes where a blur. I do not recall what I did or said but it was a blur. No one at the time knew exactly what was going on details where vague. After a while I know I arived at my grandparents house where he was at......
I started this entry 3 years ago. I couldn't bring myself to ever finish it. I wanted to finish it on his birthday since he would be turning 23 this year the same age as my sister Jenny when we found out that day he had died. I wanted to finish this to honor him.
I can still recall all this as if it was yesterday. My heart hurts so much when I think about this day. A day that should have been saved to celebrate a birthday and a happy day turned so dark and sad. It's not like it was any other day but one that will now forever have a double meaning. One of both life and death.
It has been 3 years and not a day goes by I don't think about him. I keep him in his box on our book shelf. The kids still talk about him, ask about him, they want to know all about him. I make sure to share plenty of stories of his life. Lately though I find myself looking at his page more. So many things have happened in our lives and sadly he can't be here to celebrate and and be a part of all. I know he would love to be apart of it all.
12 years ago I remember calling Alex on his birthday and telling him that he would be an uncle only two days later. He was excited. He wanted Sean to be born on his birthday. Sean and Alex had a great bond. Sean always loved when he got to come help take care of him and spend time with him. A few years later Hannah came along and his love of being an uncle just grew. Sadly he didn't get to know Ella as well and of course never knew Hunter. There are days I see a lot of Alex in H.
I miss him dearly. I wish that we could go back and time and change things. A lot of things. I wish I could go back and take back the things I said to him. I wish we could make up and move on. I live with this guilt of hurtful things I said and the fight we had just a few months before his death. I didn't agree with the choices he was making in his life and how he was handling things.
I recall the last time I saw him alive and it breaks my heart now. I picked him up at the book store shortly after he and his boyfriend had a fight. He was so upset and I was distracted and backed into a car in my blind spot. Wouldn't you know it would be a lawyer I hit and his nice car not his beater that he would normally take out on the weekend! Alex screamed at me to just GO! I yelled at him called him names and told him how I was not irresponsible like he was and that I was going to leave my information for the owner. The whole way to my grandmothers house we fought and yelled while he flipped out on the phone about his current situation to John's mom and I was on the phone with Chris so upset and trying to figure out how I was going to fix the car I hit and all this other stuff.
The fight escalated for days and then we just stopped speaking. I also stopped speaking to Cameron. The fighting had been so tense it sort of interfered with most of us. It took his death to bring us closer together. It took his death to make me realize that one day we will be gone and we can not take back the things we have said to one another in moments of anger. No disagreement is worth letting burden you a lifetime. No fight should effect those to the point of ever speaking again. Sometimes we must swallow our pride and make amends, fix our wrongs and work on creating better stronger relationships.
I know everyone tells me that my brother forgives me for our fight and the things that were said. Honestly though, while it might be true, to me I will always feel guilty for what I said and never apologizing and taking back what I said. Maybe one day I will let myself let it go that he has forgiven me.
I started this entry 3 years ago. I couldn't bring myself to ever finish it. I wanted to finish it on his birthday since he would be turning 23 this year the same age as my sister Jenny when we found out that day he had died. I wanted to finish this to honor him.
I can still recall all this as if it was yesterday. My heart hurts so much when I think about this day. A day that should have been saved to celebrate a birthday and a happy day turned so dark and sad. It's not like it was any other day but one that will now forever have a double meaning. One of both life and death.
It has been 3 years and not a day goes by I don't think about him. I keep him in his box on our book shelf. The kids still talk about him, ask about him, they want to know all about him. I make sure to share plenty of stories of his life. Lately though I find myself looking at his page more. So many things have happened in our lives and sadly he can't be here to celebrate and and be a part of all. I know he would love to be apart of it all.
12 years ago I remember calling Alex on his birthday and telling him that he would be an uncle only two days later. He was excited. He wanted Sean to be born on his birthday. Sean and Alex had a great bond. Sean always loved when he got to come help take care of him and spend time with him. A few years later Hannah came along and his love of being an uncle just grew. Sadly he didn't get to know Ella as well and of course never knew Hunter. There are days I see a lot of Alex in H.
I miss him dearly. I wish that we could go back and time and change things. A lot of things. I wish I could go back and take back the things I said to him. I wish we could make up and move on. I live with this guilt of hurtful things I said and the fight we had just a few months before his death. I didn't agree with the choices he was making in his life and how he was handling things.
I recall the last time I saw him alive and it breaks my heart now. I picked him up at the book store shortly after he and his boyfriend had a fight. He was so upset and I was distracted and backed into a car in my blind spot. Wouldn't you know it would be a lawyer I hit and his nice car not his beater that he would normally take out on the weekend! Alex screamed at me to just GO! I yelled at him called him names and told him how I was not irresponsible like he was and that I was going to leave my information for the owner. The whole way to my grandmothers house we fought and yelled while he flipped out on the phone about his current situation to John's mom and I was on the phone with Chris so upset and trying to figure out how I was going to fix the car I hit and all this other stuff.
The fight escalated for days and then we just stopped speaking. I also stopped speaking to Cameron. The fighting had been so tense it sort of interfered with most of us. It took his death to bring us closer together. It took his death to make me realize that one day we will be gone and we can not take back the things we have said to one another in moments of anger. No disagreement is worth letting burden you a lifetime. No fight should effect those to the point of ever speaking again. Sometimes we must swallow our pride and make amends, fix our wrongs and work on creating better stronger relationships.
I know everyone tells me that my brother forgives me for our fight and the things that were said. Honestly though, while it might be true, to me I will always feel guilty for what I said and never apologizing and taking back what I said. Maybe one day I will let myself let it go that he has forgiven me.
Sunday, June 17, 2012
Confliction
Another week another update. The last few days I have debated if I should continue with this writing. I don't write for sympathy or pity. I don't write for people to feel sorry for me or get attention. I write from my heart, the words and emotions I put into this is that of how I actually portray the things in my life and as a way to open up and express my deepest thoughts and emotions. I force no one to read this I post it for those who are interested in sharing in our lives and knowing what all is going on.
This week has been full of emotions all good and bad. Not just relating to H but as a family. I never write these to complain about my family or my children. These last few days have probably been just a little to much togetherness and so therefore there has been more fighting and irritability. I do expect this because it is summer and they are spending a lot more time together than they do on a regular basis. But it is all part of having kids so I just roll with it. H has still had a rough time adjusting to all the changes and has gone back to biting. He bit the snot out of Hannah's face this morning and out of Ella's hand. Sean might be sporting a bald spot from H also! They are troopers. They have taken it and just understood that this is how he is. Love those babies. I got some great news however, news I have been sitting on for a few days but now that it is all official and so I can now proclaim that my sister is going to be a MOMMY!!! Jordan and Ronnie are expecting their first daughter on or around Thanksgiving. This news has made me so happy. Nothing could make me happier than to see my sisters start their own families. So even though I have sworn off hosting baby showers and such after such bad experiences this time I am making the exception. I can not wait to celebrate!
With the last few days being so busy I had not been on to check my email. Normally I get it sent to my phone but using a back up phone I didn't get the notifications like I normally do. Yesterday I finally had the chance to see all my emails I have missed. I have not had the best relationship with my aunt Karen since moving out here. She gave me an absurd amount of grief for leaving the girls behind and that I was not a good mom for doing such. She will at the most random of time send me hurtful emails, facebook comments and posts on my blog about what a horrible mom I am, what a complainer I am and that I am so selfish. Well she decided to strike again the other day after my last blog. I have gone out of my way to be so polite and friendly and she decides in the middle of the night to write such trash to me. I asked her about giving the crib we used to Jordan and the email she sent was so opposite of the one I read the other day. In the email I got last night she went on and on about how exciting it was to take a crib that has been around for a few generations to use for Jordan's baby. Just a few days prior she went on and on about how much I complain about my children and need to figure out how to fix each of my kids and that I should be thankful for what I have and how her husband, my uncle, endured all this chemo at the age of 60 and never complained and his parents never complained about anything he ever put them through. I felt such rage building up in my body, such anger and dare I say hate.
I decided that I have had enough of her hatefulness and that enough is finally enough. I clicked on her FB page and deleted her. I have debated on responding to her hate mail but have not figured out the right words to say. I don't want to be hateful in return for two reasons, one, I am not that kind of person and two, I don't want her to take it out on Jordan and revoke the crib. I still feel the need to say something but still just not sure what. A grown woman, my aunt, so full of jealousy and anger towards me someone who does their best and works their hardest. My children are not nor have they ever been a burden to me. As parents we all have days or weeks where our children test our limits, tick us off and make us want to sell them. We know however if it came down to it we would lay down our lives for them and that we would never get rid of them or harm them. I am sick of being compared to my cousin her daughter. I am not nor do I ever want to be her. I am who I am and that is who I want to be.
Today is Father's Day. We don't have anything big and special planned. I made breakfast and lunch and will be making dinner. The two younger ones are napping and Chris and the older two are playing a board game. They really need this bonding time. I love it when they can all play together, get along, laugh and just be happy. This house has been tense for days so this was the break we all needed. I wanted to make a trip to the pool but another random storm is looming over our home at the moment. So I am sitting here listen and enjoying while they play and do their thing. I am hoping this happiness lasts the rest of the day. They are really into this game of Monopoly and are getting pretty hard core! I hear H playing in his room and Ella is still down for the count. Maybe he will stay content until this game ends but I hear him knocking on his door.
No major apts this week or therapy. The 25th we have our first West Texas Rehab apt. I got the paper work to fill out yesterday. I swear I fill out more and more paper work. We are also doing paper work through the state for assistance. This has been recommended to us buy several people as we have so many expenses we are incurring and we completely qualify. So cross your fingers and pray that we can get some extra help.
Time to get the rug rat from his room. I hear him calling for dada. Happy Father's Day to all the men out there. I hope each of you are having a wonderful special day.
This week has been full of emotions all good and bad. Not just relating to H but as a family. I never write these to complain about my family or my children. These last few days have probably been just a little to much togetherness and so therefore there has been more fighting and irritability. I do expect this because it is summer and they are spending a lot more time together than they do on a regular basis. But it is all part of having kids so I just roll with it. H has still had a rough time adjusting to all the changes and has gone back to biting. He bit the snot out of Hannah's face this morning and out of Ella's hand. Sean might be sporting a bald spot from H also! They are troopers. They have taken it and just understood that this is how he is. Love those babies. I got some great news however, news I have been sitting on for a few days but now that it is all official and so I can now proclaim that my sister is going to be a MOMMY!!! Jordan and Ronnie are expecting their first daughter on or around Thanksgiving. This news has made me so happy. Nothing could make me happier than to see my sisters start their own families. So even though I have sworn off hosting baby showers and such after such bad experiences this time I am making the exception. I can not wait to celebrate!
With the last few days being so busy I had not been on to check my email. Normally I get it sent to my phone but using a back up phone I didn't get the notifications like I normally do. Yesterday I finally had the chance to see all my emails I have missed. I have not had the best relationship with my aunt Karen since moving out here. She gave me an absurd amount of grief for leaving the girls behind and that I was not a good mom for doing such. She will at the most random of time send me hurtful emails, facebook comments and posts on my blog about what a horrible mom I am, what a complainer I am and that I am so selfish. Well she decided to strike again the other day after my last blog. I have gone out of my way to be so polite and friendly and she decides in the middle of the night to write such trash to me. I asked her about giving the crib we used to Jordan and the email she sent was so opposite of the one I read the other day. In the email I got last night she went on and on about how exciting it was to take a crib that has been around for a few generations to use for Jordan's baby. Just a few days prior she went on and on about how much I complain about my children and need to figure out how to fix each of my kids and that I should be thankful for what I have and how her husband, my uncle, endured all this chemo at the age of 60 and never complained and his parents never complained about anything he ever put them through. I felt such rage building up in my body, such anger and dare I say hate.
I decided that I have had enough of her hatefulness and that enough is finally enough. I clicked on her FB page and deleted her. I have debated on responding to her hate mail but have not figured out the right words to say. I don't want to be hateful in return for two reasons, one, I am not that kind of person and two, I don't want her to take it out on Jordan and revoke the crib. I still feel the need to say something but still just not sure what. A grown woman, my aunt, so full of jealousy and anger towards me someone who does their best and works their hardest. My children are not nor have they ever been a burden to me. As parents we all have days or weeks where our children test our limits, tick us off and make us want to sell them. We know however if it came down to it we would lay down our lives for them and that we would never get rid of them or harm them. I am sick of being compared to my cousin her daughter. I am not nor do I ever want to be her. I am who I am and that is who I want to be.
Today is Father's Day. We don't have anything big and special planned. I made breakfast and lunch and will be making dinner. The two younger ones are napping and Chris and the older two are playing a board game. They really need this bonding time. I love it when they can all play together, get along, laugh and just be happy. This house has been tense for days so this was the break we all needed. I wanted to make a trip to the pool but another random storm is looming over our home at the moment. So I am sitting here listen and enjoying while they play and do their thing. I am hoping this happiness lasts the rest of the day. They are really into this game of Monopoly and are getting pretty hard core! I hear H playing in his room and Ella is still down for the count. Maybe he will stay content until this game ends but I hear him knocking on his door.
No major apts this week or therapy. The 25th we have our first West Texas Rehab apt. I got the paper work to fill out yesterday. I swear I fill out more and more paper work. We are also doing paper work through the state for assistance. This has been recommended to us buy several people as we have so many expenses we are incurring and we completely qualify. So cross your fingers and pray that we can get some extra help.
Time to get the rug rat from his room. I hear him calling for dada. Happy Father's Day to all the men out there. I hope each of you are having a wonderful special day.
Wednesday, June 13, 2012
Breaking Point
I have picked up this computer several times over the last few days to start to write. Every time I have picked up this computer something has stopped me. Usually its a cute little boy who wants my attention or 3 really cute big kids who want my attention for one thing or another. Regardless I have taken it as a sign that these things can wait and I need to spend my time soaking in my babies because they need me.
Since the weekend life in our house has turned upside down. Not all bad just taking a big turn from the routine we had going. H loves having his brother and sisters here. He loves it so much they are not to leave his line of sight without suffering the wrath of a major meltdown. He has a love for them unlike anything I have ever seen! If they go upstairs he must be in tow. What ever they do he must be doing also. While this is very cute it also has caused a few problems. We can't drop them off at the Youth Center or leave the house without them or else he loses it. Ella feels bad when we drop her off because she makes H cry because we have to leave her there. I tell her it will be fine once he gets to school he will go on about his day and not to worry. Be that as it may the kids hate to see him get upset and know now just how hard it gets when H has these meltdowns. They all do their part to pitch in to help make him happy. Sean likes to lay on the floor and let H rough house with him. Hannah will take him off to his corner and play with his toys and Ella likes to read him books. He loves all this attention of course.
Over the weekend most of our time was spent swimming like fish. We discovered H has a strong love for the water. There is no fear for him when it comes to to the pool. I think we know now what really makes him happy. Of course with that we also have one more thing to keep an eye on. He will take it upon himself to jump on in actually. I see some swimming lessons in our near future. Thankfully the pool is not to near the house and well secure with a gate even this Houdini can not master! With this heat though I have no problems spending time there though it is fun to have some nice relaxing family time and see all of us being active.
With the weekend I really started to notice some changes. H has really been struggling and it is breaking my heart. We went to a friends house for dinner Saturday evening and while the older kids walked to a near by park that left H to stay at the house with us. I did something though that I have not ever been able to do with him. I let him go outside alone. Before everyone jumps to conclusions he was in a fenced backyard with him in my line of sight. He wondered around out there with the dogs and seemed content. It made me happy and sad. I was thrilled to see him able to go outside where he loves to be and play but makes me sad because we don't have that luxury of letting him do that at our house. I know that if we had a a backyard however when he did have a rough time we could just let him go and get it all out. Let him do what he does best and just wonder and explore.
I noticed that his anxiety level has increased over the last week. He is having a hard time adjusting and is hiding. He wants to hide under tables, chairs and even beds. Saturday the meltdown was so bad that he hid under the bed and refused to come out and eventually fell asleep. The whole thing terrified me because he was banging his head and screaming. Once he was finally out after a few hours of this his body has scratches on it from rubbing on the frame. I was sad. I really just felt hopeless. I can't bare to watch him have these meltdowns. He is so angry and sad. No baby should be like that. I immediately started my search for tunnels and tents for him to have as a safe hiding place. In just an hour a few great friends stepped up and offered to help us out! I felt relief and peace. I want him to have the things he needs to keep him calm and safe. I know those who are closest to us see that too and are doing what they can to help. It makes me so happy and appreciative to see so many who want to help us.
This week has been tough. His mornings at school have been hard. Lots of anger and roughness. He wants to run from the room, take off his clothes, hide under the table and of course attack his friends. I hate putting his teachers through this. They are troopers and they are really stepping up to the plate to take care of H. ECI was not able to come Tuesday so I was not able to address the issues. I did speak to Staci and give her the heads up. She is hoping we hear from Dr. Rogers soon. Today I met with Becky his coordinator and had some good discussions on what is going on. We both agree some regression in behaviors and milestones need to be addressed again with his doctor. I am going to make a call to see where we stand with our referral.
All these minor set backs hurt me. I feel like nothing I can do is good enough for him. I want to help him but at the same time what I know, what I have been taught and trained to do isn't working. It leaves me feeling like a failure. Its times like these I just reach my breaking point and want to cry. Crying however isn't going to change anything or make it better so I suck it up and keep going. I wasn't given anything more than I can handle so apparently I can handle this. I just need to learn how to handle it all better. I am always afraid I am doing more harm than good. That if I don't do it right or over look something I am going to make it all worse. I hate putting that sort of pressure on myself but lately I find myself doing it more and more.
Well these sleepless nights have come back around. Apparently insomnia does not care if you have a job, house full of kids or a family that needs me. Maybe I should try some of that Melatonin. Well since it is almost midnight maybe I should give this whole sleep thing a try. H is down and has been for a few hours. Maybe I should lay down and see what happens.
Since the weekend life in our house has turned upside down. Not all bad just taking a big turn from the routine we had going. H loves having his brother and sisters here. He loves it so much they are not to leave his line of sight without suffering the wrath of a major meltdown. He has a love for them unlike anything I have ever seen! If they go upstairs he must be in tow. What ever they do he must be doing also. While this is very cute it also has caused a few problems. We can't drop them off at the Youth Center or leave the house without them or else he loses it. Ella feels bad when we drop her off because she makes H cry because we have to leave her there. I tell her it will be fine once he gets to school he will go on about his day and not to worry. Be that as it may the kids hate to see him get upset and know now just how hard it gets when H has these meltdowns. They all do their part to pitch in to help make him happy. Sean likes to lay on the floor and let H rough house with him. Hannah will take him off to his corner and play with his toys and Ella likes to read him books. He loves all this attention of course.
Over the weekend most of our time was spent swimming like fish. We discovered H has a strong love for the water. There is no fear for him when it comes to to the pool. I think we know now what really makes him happy. Of course with that we also have one more thing to keep an eye on. He will take it upon himself to jump on in actually. I see some swimming lessons in our near future. Thankfully the pool is not to near the house and well secure with a gate even this Houdini can not master! With this heat though I have no problems spending time there though it is fun to have some nice relaxing family time and see all of us being active.
With the weekend I really started to notice some changes. H has really been struggling and it is breaking my heart. We went to a friends house for dinner Saturday evening and while the older kids walked to a near by park that left H to stay at the house with us. I did something though that I have not ever been able to do with him. I let him go outside alone. Before everyone jumps to conclusions he was in a fenced backyard with him in my line of sight. He wondered around out there with the dogs and seemed content. It made me happy and sad. I was thrilled to see him able to go outside where he loves to be and play but makes me sad because we don't have that luxury of letting him do that at our house. I know that if we had a a backyard however when he did have a rough time we could just let him go and get it all out. Let him do what he does best and just wonder and explore.
I noticed that his anxiety level has increased over the last week. He is having a hard time adjusting and is hiding. He wants to hide under tables, chairs and even beds. Saturday the meltdown was so bad that he hid under the bed and refused to come out and eventually fell asleep. The whole thing terrified me because he was banging his head and screaming. Once he was finally out after a few hours of this his body has scratches on it from rubbing on the frame. I was sad. I really just felt hopeless. I can't bare to watch him have these meltdowns. He is so angry and sad. No baby should be like that. I immediately started my search for tunnels and tents for him to have as a safe hiding place. In just an hour a few great friends stepped up and offered to help us out! I felt relief and peace. I want him to have the things he needs to keep him calm and safe. I know those who are closest to us see that too and are doing what they can to help. It makes me so happy and appreciative to see so many who want to help us.
This week has been tough. His mornings at school have been hard. Lots of anger and roughness. He wants to run from the room, take off his clothes, hide under the table and of course attack his friends. I hate putting his teachers through this. They are troopers and they are really stepping up to the plate to take care of H. ECI was not able to come Tuesday so I was not able to address the issues. I did speak to Staci and give her the heads up. She is hoping we hear from Dr. Rogers soon. Today I met with Becky his coordinator and had some good discussions on what is going on. We both agree some regression in behaviors and milestones need to be addressed again with his doctor. I am going to make a call to see where we stand with our referral.
All these minor set backs hurt me. I feel like nothing I can do is good enough for him. I want to help him but at the same time what I know, what I have been taught and trained to do isn't working. It leaves me feeling like a failure. Its times like these I just reach my breaking point and want to cry. Crying however isn't going to change anything or make it better so I suck it up and keep going. I wasn't given anything more than I can handle so apparently I can handle this. I just need to learn how to handle it all better. I am always afraid I am doing more harm than good. That if I don't do it right or over look something I am going to make it all worse. I hate putting that sort of pressure on myself but lately I find myself doing it more and more.
Well these sleepless nights have come back around. Apparently insomnia does not care if you have a job, house full of kids or a family that needs me. Maybe I should try some of that Melatonin. Well since it is almost midnight maybe I should give this whole sleep thing a try. H is down and has been for a few hours. Maybe I should lay down and see what happens.
Saturday, June 9, 2012
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| I guess his chew toys are not enough so the poor mermaid gets it! |
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| Sitting on the back of one of the trucks. This is the place he loves to be every Tuesday night |
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| He had a great time at Cook's but he was ready to leave the doctors office. He took all the paper off the exam table and went to town. I think they got the hint because a few minutes later we were on our way lol! |
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| Wanting to be just like daddy. He loves his wearing daddies glasses |
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| He is so excited to hang out with his brother and sisters. They had so much fun today at the pool. |
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| Testing the water. He would rather just splash for now. |
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| He is just going to watch and learn how to swim like his brother. |
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| "Here Sean let me splash your face with some water." |
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| Showing us how much he loves his doggy. They like to hug. |
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| Horse playing with his pup. This dog is so tolerant of his antics. They are like two peas in a pod. |