Hi Friends!
Sorry I haven't written all week. It has been busy. I feel like I am still catching my breath. One thing has become very clear to me; as much as I think I know or have experienced the fact is i know very little.. I have been humbled..
Last week I shared about the pre-IEP meeting at school for Marcus. After that meeting I was so gun-ho on making lists, schedules, post rules, and everyone would obey; then it would be "perfect." HA! HA! Joke was on me! First, I had assumed the Hub would be on board, he was leery. (sigh) The first huddle was bringing him up to speed on my thought process, then we could mostly be on the same page. Second, was getting the kids up to speed and "forcing" them to embrace the "new" schedules, which I will say is the same except I wrote it down and gave it times.. Funny how when you assign times and time limits how that freaks every one out. Who knew?!? I didn't know that!
The week has been full of mornings of yelling and forcing them to look at and follow the schedule, followed by afternoon and evenings of the same. Funny thing is it has been hard for me to stick to the schedule too! By the end of the week it is getting easier. I continue to repeat to myself 2 to 3 wks before a new habit sticks.. 2 to 3 wks.. How daunting! So then I need to take a deep breath and "muscle" through it. We, I, will get there.. I have no doubt once everyone settles into the schedule some things will go smoother!
In the midst of this crazy week, a friend was an angel for me! Miss P took Marcus after school Tuesday and Thursday this week. She helped him with his homework and just loved on him like a grandma, He thrived in that. He loves her! Thank you so much Miss P! Transition time from Miss P's house to home and back on schedule proved difficult for Marcus. I could see he was trying. I still don't know what to do to make every day transition tome easier for him. I suppose I just need to be patient and not try to "fix" or analyze everything all the time every day. Some times, even kids with aspergers are JUST KIDS! (deep breath) I am still learning to pick and choose my battles and to just let it go for now. NOT EVERYTHING CAN BE FIXED IN 1 DAY OR WITH 1 SCHEDULE OR LIST!
I also had a meeting with Tahlia's school this week. I had a lot of questions. They of course refused at this time to do an evaluation on her for aspergers like her brother. They also have refused to assess for an IEP. They are willing to fill out Vanderbuilt Behavior forms for her pediatrician. This way I can have her diagnosed with ADD or ADHD like her brothers. It has become quite clear that she does have difficulty concentrating and being present like her brothers. Thinking I need to buy 4 pillboxes color coded and labeled! I called and made an appt. She will be seen the beginning of March. (another deep breath moment) It can not all be done in 1 day! (even if i want it to be or try to will it to be)
This week has been so stressful for me. I have not been letting it go so it rolls over to the next moment and to the next day. My brain is on overload, which means nothing gets done or it doesn't get done right. This week the Hub made a comment that I was shutting down and shutting him out and hte kids. I couldn't believe it! Are you kidding me?!? Everything I do is for the kids and you (the Hub)! I even think things through and come up with ideas when I am driving from patient home to patient home. Right now I live and breathe kids home family and how to make it better! oh wait... He's right.. I have been trying to make everyone else better and "muscling" through it all that I have not been listening to the Hub, the kids, and mostly God. Since I want to be heard and to make things work I have been yelling louder and louder.. which means they all have been tuning me out more and more.. until they hear wah wah wah (like charlie brown's teacher). Fail! Do i throw my arms up and say i give up? I want to, but it really is not who I am or who God made me to be! I take a step back. I need to pray. I need a new perspective.. I feel ill equipped. I feel unworthy.
God, thank you for seeing me as you have made me and not as I see myself!
The last day of the week that I worked God planned on me meeting a special patient. Had her main nurse not have gotten sick, I probably would have never of met her. I am sorry my co-worker got sick, I am thankful I had the chance to meet this patient. I was going about my day driving from home to home, teaching and instructing and doing labs ect.. Thinking about schedules, times, and how to make it all work. I got to this patient's home. Introduced myself to her and her family. Asked about a few things. It became apparent that the day prior was a rough day for her and so was this day. She reported a list of symptoms to me and her concern over stopping a certain medication that she has been taking for years and only ever missed once. I listened. She spoke about praying and asking God not to let her worry or dwell on the medication and that the Drs knew what they were doing. I explained on the reason of stopping the medication and the importance of following the instructions. Took her vital signs and placed a call to the Dr, to give report to his nurse. After hanging up the phone the patient looked at me and thanked me. I smiled and said of course! That is what I am here for. She said "No, thank you for reassuring me and making me feel better about what is going on and caring. I feel very comfortable with you." I sat there and smiled. THEN she went on to explain how she had prayed for someone to help her, to reassure her and to help her feel more comfortable. oh... I am humbled that this patient, follower of God, felt I was sent to help her. I am humbled that God allowed me to be the vehicle.. I am Thankful God does not see me as unworthy as I see myself...
At the end of the moment, at the end of the day, at the end, it is not about what I want. It is about what God wants, desires, and His plans for me and my life! I pray throughout the day. I pray about what is going on and guidance and for what I think I NEED aka want. I realize I don't thank Him very much, like a spoiled child who doesn't get exactly what I want at Christmas or on my birthday! I am thankful! I need to remember to tell Him that! I am thankful for the kids I have. I am thankful for the Hub I have. I am thankful for the people He has placed in my life. I am thankful for those in my life who listen and hear God so clearly that they step out and forward so boldly. Thank you God for all these blessings that I am blind to most of the time.
I am still learning. I am still searching. I know God is here and He will lead if I allow Him to take the reigns. I am tired of "muscling" through and just making it through each moment and each day intact. I want to be full. I want my kids and the Hub to be full of joy and life! Help me Jesus! Take control! Take the reigns! Teach me how!
Love you!
De
Sunday, January 30, 2011
Wednesday, January 19, 2011
Day 2 Meeting w/ the school
*Today was a whirlwind type day. I wasn't overly busy, but my brain is tired and bogged down w/ information and questions. I want to start out by saying how faithful and awesome our God is! His faithful followers have put me in touch w/ people who are more knowledgeable about Aspergers and people who have resources at their finger tips full of info! For this I am so thankful! (despite the brain overload!)
*Marcus has been approved for an IEP(individual education program). The next meeting will be in February to set up goals and items to be included in that IEP. I am now busy gathering info of what should and should not be included in an IEP and of Marcus' rights.
*The meeting was long. I was not surprised by the things they talked about. He has "superior intelligence" (duh! he reminds of that daily lol). His scores on all his tests were above his age and grade level, however his academic work was average or below. Why? he gets bored and distracted, easily agitated ect.. His verbal skills were through the roof! (I went to school with people w/ huge vocabs. hmmm) Despite a huge vocab it is very difficult for him to express himself, especially if he is anxious or frustrated so instead of using his words he cusses like a sailor and says things like "just shoot me" ect.. Marcus has a very difficult time making and maintaining friendships bc he does not understand or recognize social norms or rules.. He lacks that filter in his brain that says "hey i better not say that bc it could make them mad or hurt their feelings" He deals in the concrete and literal. Monkey also struggles on the bus ride home bc it is a long ride. (they have a crazy route)
*Conclusions today next week he will be dropped off by the school van and avoid the long bus ride home. The teachers will be making a "safe zone" in each of their rooms just for him so he can decompress and "chill out." They will be coming up with a behavioral plan with concrete rewards and concrete consequences, I have decided since he seems ot need more time for science bc during that time his anxiety and frustrations seem to be high, he will not be participating in Spanish class for the time being. Hopefully, the results will be a less stressed Monkey and a less stressed teacher.
*At home I will be making new rules and expectation charts just for him. I will be taking felt and sewing on Velcro so he can pull them apart, similar to tearing/ripping paper. He rips paper and things when he is very agitated and escalating. He then has remorse for the things he has destroyed. He has destroyed some of his favorite books and drawings and things..
*This journey is not just about Marcus, it is about all of us as a family. We have to get Marcus settled and on the right track right now, bc he is in crisis. Then we will have to shift focus and work w/ our dtr Tahlia who may have Aspergers too. Her symptoms and behaviors are so different. I read a quote "once you seen one child with Aspergers you know one child with Aspergers". It has become quite clear it is a disorder that is as different as the snowflakes that fall!
*Today I am more hopeful, more thankful, more content then yesterday. I am working at chipping away the anger and frustration. This path and process can be so overwhelming and isolating. It is becoming clear there are a lot of people dealing with this or something similar. I feel like it is so isolating bc no one really talks about it, at least where I am from. We dont talk bc we dont want to be judged. We all have had people in our lives or people we have run into that have the ill placed piece of advice or the rude comment. They really have no clue. As far as they know your child could be having a good behavior day. Instead we need to talk to our friends and our family and our neighbors bc the more we talk the less isolating it becomes. The less we are isolated the more we can form a community of people who support each other and can be there for each other and our awesome kids! Being isolated is exactly what the devil wants,. He wants us to feel alone so we can be angry, frustrated, mean, and not connect to God like we should. The devil is the master theif and he wants to steal from us what God has intended for each of us.
*I do not want to be stolen from! I do not want Marcus or Alex or Spencer or Tahlia to be cheated from having everything God intended for them. I dont want them to settle bc they have this or that!
*I want to be a better example. I want to be the wife and mom I was created to be for these children. It is not an easy road, but we were never promised that the road set before us would be easy. I am tired of crying tears of frustration and tears from being overwhelmed. I know with praying and listen to God. Learning to listen to Him better, the prayers from my friends, and church family. That I can transform. In my transformation my children's lives will be different. I am just starting. I covet your prayers!
As my mom used to sign all letters and cards..
Gods love and Ours
De :)
*Marcus has been approved for an IEP(individual education program). The next meeting will be in February to set up goals and items to be included in that IEP. I am now busy gathering info of what should and should not be included in an IEP and of Marcus' rights.
*The meeting was long. I was not surprised by the things they talked about. He has "superior intelligence" (duh! he reminds of that daily lol). His scores on all his tests were above his age and grade level, however his academic work was average or below. Why? he gets bored and distracted, easily agitated ect.. His verbal skills were through the roof! (I went to school with people w/ huge vocabs. hmmm) Despite a huge vocab it is very difficult for him to express himself, especially if he is anxious or frustrated so instead of using his words he cusses like a sailor and says things like "just shoot me" ect.. Marcus has a very difficult time making and maintaining friendships bc he does not understand or recognize social norms or rules.. He lacks that filter in his brain that says "hey i better not say that bc it could make them mad or hurt their feelings" He deals in the concrete and literal. Monkey also struggles on the bus ride home bc it is a long ride. (they have a crazy route)
*Conclusions today next week he will be dropped off by the school van and avoid the long bus ride home. The teachers will be making a "safe zone" in each of their rooms just for him so he can decompress and "chill out." They will be coming up with a behavioral plan with concrete rewards and concrete consequences, I have decided since he seems ot need more time for science bc during that time his anxiety and frustrations seem to be high, he will not be participating in Spanish class for the time being. Hopefully, the results will be a less stressed Monkey and a less stressed teacher.
*At home I will be making new rules and expectation charts just for him. I will be taking felt and sewing on Velcro so he can pull them apart, similar to tearing/ripping paper. He rips paper and things when he is very agitated and escalating. He then has remorse for the things he has destroyed. He has destroyed some of his favorite books and drawings and things..
*This journey is not just about Marcus, it is about all of us as a family. We have to get Marcus settled and on the right track right now, bc he is in crisis. Then we will have to shift focus and work w/ our dtr Tahlia who may have Aspergers too. Her symptoms and behaviors are so different. I read a quote "once you seen one child with Aspergers you know one child with Aspergers". It has become quite clear it is a disorder that is as different as the snowflakes that fall!
*Today I am more hopeful, more thankful, more content then yesterday. I am working at chipping away the anger and frustration. This path and process can be so overwhelming and isolating. It is becoming clear there are a lot of people dealing with this or something similar. I feel like it is so isolating bc no one really talks about it, at least where I am from. We dont talk bc we dont want to be judged. We all have had people in our lives or people we have run into that have the ill placed piece of advice or the rude comment. They really have no clue. As far as they know your child could be having a good behavior day. Instead we need to talk to our friends and our family and our neighbors bc the more we talk the less isolating it becomes. The less we are isolated the more we can form a community of people who support each other and can be there for each other and our awesome kids! Being isolated is exactly what the devil wants,. He wants us to feel alone so we can be angry, frustrated, mean, and not connect to God like we should. The devil is the master theif and he wants to steal from us what God has intended for each of us.
*I do not want to be stolen from! I do not want Marcus or Alex or Spencer or Tahlia to be cheated from having everything God intended for them. I dont want them to settle bc they have this or that!
*I want to be a better example. I want to be the wife and mom I was created to be for these children. It is not an easy road, but we were never promised that the road set before us would be easy. I am tired of crying tears of frustration and tears from being overwhelmed. I know with praying and listen to God. Learning to listen to Him better, the prayers from my friends, and church family. That I can transform. In my transformation my children's lives will be different. I am just starting. I covet your prayers!
As my mom used to sign all letters and cards..
Gods love and Ours
De :)
Tuesday, January 18, 2011
Day 1 New at this
I am unsure where to start. I have not been given the gift of writing and being eloquent with words as some of my friends have. Please forgive the grammar and spelling errors! Thanks!
First I want to introduce myself. I am De. I am a wife, a mom, a nurse, a daughter ect.. I am married to a man I always imagined I would be married to, I am blessed. Without my husband I would not be where I am today. (I will get to why some time.)
What brings me to a blog? Why am I here? These are good questions bc I am asking them myself! I am here bc I am frustrated with how some things have been going in my life and my kids' lives. There has been a lot of strife in house for a long time. This is not what God wants or intends for our family! It has to stop. Let me start from the beginning., It is long so I will start with the highlights and if you have questions I will try to answer them.
My husband and I were married in Sept 1996. We thought we had the world in our hands. Our 1st son, Spencer, was born a little over a yr later. Every couple expects their child to be pink, crying and healthy when they enter the world, whether that child is your 1st, 2nd, or 6th. Unfortunately Spencer was born with a tumor in his airway and was unable to breathe much to everyone's surprise. (fast forward) Spencer went through years of multiple surgeries, we stop keeping track after 20. There came a time when he was 6yrs old that surgeries weren't working and we had to embark on a year of chemo. After a year and the Docs came to the conclusion that the chemo was not working. My husband and I talked and after much discussion we decided to sign a DNR for our son, no we were not giving up on him! (that is another story for another time) We then did 7wks of radiation and a chemo pill. TA DA! It worked and his tumor was finally shrinking and no longer a threat to his very being. On Spencer's 8th bday we had a huge party and burnt his DNR papers. THAT my friends was ONE OF THE BEST DAYS EVER! (fast forward) Today Spencer is a happy HEALTHY 13 yr old! In between of all this chaos we went on to have 3 more children, Alex 10, Marcus 9, Tahlia Grace 7. I also went to nursing school and we bought a house. (whew) right?!? :)
Why did I start with all of this? I want to give you a perspective of where I am coming from, since we all walk a different path, this is just a glimpse of what we have been through. Since, I have fast forwarded to today.. This brings me to why I have started this blog...
Marcus. (sigh) I love him dearly! He has always been a quirky kid. We always have said "that's just monkey", "that's just how he is". Little did we know what was to come. I am so thankful God allowed us to deal with Spencer's health issues 1st before we embarked on this current journey.
Two years ago Marcus started having outbursts and anger issues, we still thought it was a "phase". He didnt grow out of it. The outbursts got worse and worse to the point we were very concerned about him. We did behavior charts and positive reinforcement and rewards and consequences ect.. We felt like we did it all.. We were very frustrated, angry, and just at a loss as to what to do with this child. His outbursts had become so bad that he was scaring us, his brothers, and his sister, During this time his brother Alex became diagnosed with ADHD.. DING DING! The light bulb went off.. Maybe Marcus had this too and he was just showing it differently than his brother who would burst into tears and wants his stiff and things just so...
Afew weeks later Marcus was diagnosed with ADHD. We thought we had our answer. We had a piece to the puzzle but that was it. The med helped him concentrate but did nothing for the angry outbursts and the sailor like language. The pediatrician did not know what to do with him. He wanted monkey to go to counseling.. REALLY? Well, like most people our insurance does not cover counseling. We decided to wait and see.. Needless to say waiting and seeing didn't last long. The school was calling about his outbursts and they themselves didn't know what to do. Unfortunately for us Marcus was a a private school at the time and they didn't know what to do or they didn't want to do what they should which would have meant getting resources from the public school system. We don't know and we wont know. We have since changed schools. (that's another story) With school calling and the outbursts at home I was at my limit and beyond as was the rest of the family. I came home just a few minutes after all the kids had gotten off the bus and all chaos and craziness had broken loose in my house. Tahlia was hiding in her room, Spencer was cowering in the kitchen and Alex was waiting at the front door for me to give me the low down. Apparently Marcus had had a really bad day and was screaming and threatening to kill himself. THAT WAS IT! I HAD HAD IT! I WAS DONE DOING THIS ALONE! I called the crisis team at the counseling center. I "threw" Marcus into the car and went there.. Amazing all of a sudden he was quiet. That's is the day we started on our journey today. We ended up with a Home Interventionist Specialist (she was awesome.) and got on the waiting list for his current Dr. After much reassurance that in fact we are good parents and that by any standards we were doing everything we could to help Marcus. We felt a little better.
Last Feb he started seeing his current Dr and after months of diff med changes and tests, it became quite apparent that Marcus did not fit into 1 box of this or a box of that.. He had a little bit of every box which makes up our quirky kid.. As the Dr has gotten to know Marcus she has found him "interesting" which isn;t always comforting to the parent, just saying :)
Marcus' unofficial diagnosis is Aspergers, Aspergers is on the Autism spectrum disorder. In short his brain is not wired the same as yours and mine. He sees the world completely differently than you and I. He does not have the filter in his head that stops him from saying hurtful things, even though they may be true. When he is mad his says things like "just put a bullet in my head!" "why dont you just kill me and get it over with!" :I really do wish I was dead!" Shocking! I know. It breaks my heart to these things out of my child's mouth every day. For him saying these things are like you or I saying "i can't take it anymore!" "I have had enough!" "I am done!" He needs the tools to be able to say "i am really mad and I need a break" and we are working on that
We are waiting on Akron Children's to call us back to get him evaluated .to get the official diagnosis of Aspergers. With an official diagnosis there should be more help for him in school. He doesnt really need academic help but he clearly needs someone with him to remind him and be his inner voice about his behavior and choices.
Tomorrow is my 1st official meeting w/ school professionals to discuss getting him and IEP.. So we shall see. I am hoping the sooner he gets an IEP the sooner he will start excelling in school and do better than he has thus far.
Why an I here? Why am I writing all of this? Because, I feel like I have lost my child. I get to see glimpses of him occasionally. The real Marcus.. The Marcus that runs, laughs, is silly, and has a wicked sense of humor. I miss him, and my heart aches for him.. I know anyone who has a child with Aspergers or who has grown up with Aspergers, so I am writing to vent and to let other moms and dads know they are not alone. We are here walking this path too. This is a hard, demanding grueling path that we must walk for our kids.
In walking this path for my child somehow I have lost myself. I am no longer happy go lucky, nor do i do things on a whim I dont give hugs and smiles out freely anymore, and I am angry.. I am angry at everything now. I am quick to yell. Quick to walk away.Quick to have a sharp tongue. Quick to shut people out and to shut people down. My home doesnt feel like a home anymore.. It is just a house where we all exist and the fun has been sucked out. My husband of course has been affected,, He is angry and not fun silly person he used to be either.
One thing I do know is that I can not fix him. I hope that finding myself again and allowing God to work in me my family can be mended and I just know and trust that during this process we will find the real Marcus too!
One step we have made we told our pastor what was going on and he is praying for us. The last 1.5 weeks has been more calm. I also let a friend in and I am not hiding from her. She has offered to love on Marcus and to have him 1-2x a week and be "grandma" type for him. (My mom died 4yrs ago).
My plan is to chronicle at least 2-3x a week as I start out on this journey. I am looking for a book to read and praying about it to lead me..
Take Care.
Pray for Marcus and My Family as we walk this path and learn and grow together. Pray for me as I seek change. Some wise man I know said "transformation is a painful process and it is not easy" but it is better than where I am coming from right now.
De:)
First I want to introduce myself. I am De. I am a wife, a mom, a nurse, a daughter ect.. I am married to a man I always imagined I would be married to, I am blessed. Without my husband I would not be where I am today. (I will get to why some time.)
What brings me to a blog? Why am I here? These are good questions bc I am asking them myself! I am here bc I am frustrated with how some things have been going in my life and my kids' lives. There has been a lot of strife in house for a long time. This is not what God wants or intends for our family! It has to stop. Let me start from the beginning., It is long so I will start with the highlights and if you have questions I will try to answer them.
My husband and I were married in Sept 1996. We thought we had the world in our hands. Our 1st son, Spencer, was born a little over a yr later. Every couple expects their child to be pink, crying and healthy when they enter the world, whether that child is your 1st, 2nd, or 6th. Unfortunately Spencer was born with a tumor in his airway and was unable to breathe much to everyone's surprise. (fast forward) Spencer went through years of multiple surgeries, we stop keeping track after 20. There came a time when he was 6yrs old that surgeries weren't working and we had to embark on a year of chemo. After a year and the Docs came to the conclusion that the chemo was not working. My husband and I talked and after much discussion we decided to sign a DNR for our son, no we were not giving up on him! (that is another story for another time) We then did 7wks of radiation and a chemo pill. TA DA! It worked and his tumor was finally shrinking and no longer a threat to his very being. On Spencer's 8th bday we had a huge party and burnt his DNR papers. THAT my friends was ONE OF THE BEST DAYS EVER! (fast forward) Today Spencer is a happy HEALTHY 13 yr old! In between of all this chaos we went on to have 3 more children, Alex 10, Marcus 9, Tahlia Grace 7. I also went to nursing school and we bought a house. (whew) right?!? :)
Why did I start with all of this? I want to give you a perspective of where I am coming from, since we all walk a different path, this is just a glimpse of what we have been through. Since, I have fast forwarded to today.. This brings me to why I have started this blog...
Marcus. (sigh) I love him dearly! He has always been a quirky kid. We always have said "that's just monkey", "that's just how he is". Little did we know what was to come. I am so thankful God allowed us to deal with Spencer's health issues 1st before we embarked on this current journey.
Two years ago Marcus started having outbursts and anger issues, we still thought it was a "phase". He didnt grow out of it. The outbursts got worse and worse to the point we were very concerned about him. We did behavior charts and positive reinforcement and rewards and consequences ect.. We felt like we did it all.. We were very frustrated, angry, and just at a loss as to what to do with this child. His outbursts had become so bad that he was scaring us, his brothers, and his sister, During this time his brother Alex became diagnosed with ADHD.. DING DING! The light bulb went off.. Maybe Marcus had this too and he was just showing it differently than his brother who would burst into tears and wants his stiff and things just so...
Afew weeks later Marcus was diagnosed with ADHD. We thought we had our answer. We had a piece to the puzzle but that was it. The med helped him concentrate but did nothing for the angry outbursts and the sailor like language. The pediatrician did not know what to do with him. He wanted monkey to go to counseling.. REALLY? Well, like most people our insurance does not cover counseling. We decided to wait and see.. Needless to say waiting and seeing didn't last long. The school was calling about his outbursts and they themselves didn't know what to do. Unfortunately for us Marcus was a a private school at the time and they didn't know what to do or they didn't want to do what they should which would have meant getting resources from the public school system. We don't know and we wont know. We have since changed schools. (that's another story) With school calling and the outbursts at home I was at my limit and beyond as was the rest of the family. I came home just a few minutes after all the kids had gotten off the bus and all chaos and craziness had broken loose in my house. Tahlia was hiding in her room, Spencer was cowering in the kitchen and Alex was waiting at the front door for me to give me the low down. Apparently Marcus had had a really bad day and was screaming and threatening to kill himself. THAT WAS IT! I HAD HAD IT! I WAS DONE DOING THIS ALONE! I called the crisis team at the counseling center. I "threw" Marcus into the car and went there.. Amazing all of a sudden he was quiet. That's is the day we started on our journey today. We ended up with a Home Interventionist Specialist (she was awesome.) and got on the waiting list for his current Dr. After much reassurance that in fact we are good parents and that by any standards we were doing everything we could to help Marcus. We felt a little better.
Last Feb he started seeing his current Dr and after months of diff med changes and tests, it became quite apparent that Marcus did not fit into 1 box of this or a box of that.. He had a little bit of every box which makes up our quirky kid.. As the Dr has gotten to know Marcus she has found him "interesting" which isn;t always comforting to the parent, just saying :)
Marcus' unofficial diagnosis is Aspergers, Aspergers is on the Autism spectrum disorder. In short his brain is not wired the same as yours and mine. He sees the world completely differently than you and I. He does not have the filter in his head that stops him from saying hurtful things, even though they may be true. When he is mad his says things like "just put a bullet in my head!" "why dont you just kill me and get it over with!" :I really do wish I was dead!" Shocking! I know. It breaks my heart to these things out of my child's mouth every day. For him saying these things are like you or I saying "i can't take it anymore!" "I have had enough!" "I am done!" He needs the tools to be able to say "i am really mad and I need a break" and we are working on that
We are waiting on Akron Children's to call us back to get him evaluated .to get the official diagnosis of Aspergers. With an official diagnosis there should be more help for him in school. He doesnt really need academic help but he clearly needs someone with him to remind him and be his inner voice about his behavior and choices.
Tomorrow is my 1st official meeting w/ school professionals to discuss getting him and IEP.. So we shall see. I am hoping the sooner he gets an IEP the sooner he will start excelling in school and do better than he has thus far.
Why an I here? Why am I writing all of this? Because, I feel like I have lost my child. I get to see glimpses of him occasionally. The real Marcus.. The Marcus that runs, laughs, is silly, and has a wicked sense of humor. I miss him, and my heart aches for him.. I know anyone who has a child with Aspergers or who has grown up with Aspergers, so I am writing to vent and to let other moms and dads know they are not alone. We are here walking this path too. This is a hard, demanding grueling path that we must walk for our kids.
In walking this path for my child somehow I have lost myself. I am no longer happy go lucky, nor do i do things on a whim I dont give hugs and smiles out freely anymore, and I am angry.. I am angry at everything now. I am quick to yell. Quick to walk away.Quick to have a sharp tongue. Quick to shut people out and to shut people down. My home doesnt feel like a home anymore.. It is just a house where we all exist and the fun has been sucked out. My husband of course has been affected,, He is angry and not fun silly person he used to be either.
One thing I do know is that I can not fix him. I hope that finding myself again and allowing God to work in me my family can be mended and I just know and trust that during this process we will find the real Marcus too!
One step we have made we told our pastor what was going on and he is praying for us. The last 1.5 weeks has been more calm. I also let a friend in and I am not hiding from her. She has offered to love on Marcus and to have him 1-2x a week and be "grandma" type for him. (My mom died 4yrs ago).
My plan is to chronicle at least 2-3x a week as I start out on this journey. I am looking for a book to read and praying about it to lead me..
Take Care.
Pray for Marcus and My Family as we walk this path and learn and grow together. Pray for me as I seek change. Some wise man I know said "transformation is a painful process and it is not easy" but it is better than where I am coming from right now.
De:)
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