I feel like I am finally in a place where I can update this blog. The past 2 months have almost been a blur for me. There have been many days when I have looked around and went this really cannot be my reality right now. I never had problems accepting the fact that my oldest son was autistic But I had never dreamed it would mean that he would be near suicidal at the age of 11. That he would have to enter a behavioral treatment center. That those cost and the cost of his new medicines would cost us more then our rent each month. Now that is not a complaint. I am more then willing to do and spend what it takes for him the "get better". There will never be any cure for what ails my son.
What I have learned and more importantly what he has learned over the past 2 months is ways for him to deal with being out of sync with the rest of the world. We have gone from having 4 to 5 hr long meltdowns every day to maybe a small meltdown every 2 weeks. He will never be cured. The autism will never go away. I am sure once he gets started back in public schools in the fall the same triggers will be there for him. I am hopeful though that he will be able to manage his stress better. That he will be able to identify when he is getting overloaded sensory wise and will take his much needed breaks. We do breathing exercises at home when he starts to get stressed. We have done relaxation exercises. He has taken to being the "teacher" here at home with his younger siblings. He will see them getting upset and will try to talk them through how they are feeling etc.
I have found out that he will be discharged at the same time that would have been his last day of school. We are going to have a hectic summer. We will be visiting family in Missouri for a week, moving, and then we will have to go all of July and August with his father being in Houston for training. I am hoping for a great summer. I hope he can enjoy every day and not be stressed about what to expect at the new school in the fall. I am hoping for all of us this summer just brings fun. I look at him now and can't contain just how proud of him I am. He has come a long way in the past two months. I know that we will still have meltdowns. Nothing is going to go away forever. But I can honestly say that the future does finally start to look a little bit brighter.
Friday, May 10, 2013
Sunday, March 24, 2013
Where to begin
The past 4 days have been a mix of despair and hope and frustration. On Wednesday morning I was annoyed. My son was in a meltdown at school (again) and I had gotten a text that the principal wanted me to escort him to every class that day. I put off the drive to the school as long as I could. As most of you know we have been in family therapy. We just went the night before. Another night of my son not saying why he says the things he does when he melts down. The focus was more on how we handled his meltdowns different as parents more then my son himself. As we left my husband was like we need somebody who specializes in autism because this isn't getting us anywhere. I agreed with him but was still willing to try this family therapy thing. I was stressed to the max and felt it could be a good outlet for me.
I pulled up to the school and let his aide know I was there. I sat in the office for several minutes alone. I could almost feel something in the air. I could see the behavioral therapists go in and out of the principal's office. A voice in my head went this is NOT good. I was hearing whispers of this needs to be on school letter head and she needs to know that her child whisper whisper whisper. I still was not prepared for the clusterfuck that I walked into.
I was walked down the hallway to where my son was holed up grunting and banging inside a cupboard. His aide was sitting on a chair in the doorway. I was led into a conference room. I knew one of them was carrying a piece of paper. I knew whatever was on that paper was not good. I could feel myself start to fall apart. We are concerned they started with. I caught a glimpse of what was on that paper and started to cry. It was a letter informing me of my son's suicidal threats. A kind of we need to cover our ass kind of letter that I needed to sign. A letter that stated my son couldn't return to school until this matter was resolved. In the middle of his meltdown and his normal I wish I would die, I wish I was never born , I don't deserve to be alive turned into something else. Once before he has asked his dad to kill him. The week before he tried to choke himself. Since Sandy Hook our district has had armed officers in every school. His officer was making his normal rounds when he heard my son banging and yelling during his meltdown. As the officer peeked in the room my son turned to him and said "please just kill me and end my nightmare". Those words spoken to that officer started a process that couldn't be stopped. We ended up in the ER of a children's hospital. The first plan was that my son needed to be sent away. About 2 1/2 hrs a way to hospital for inpatient treatment. No parents allowed. Apparently my county no longer offers any services like this. Apparently we were lucky to even get an assessment. After a few hours and several long talks with intake assessors etc they got a good sense of how my son is. They realized that sending him away would do him more harm then good. But he needed help.
At some point the intake nurse asked again about our insurance. Then she was like oh wait you have private insurance. Then she said she knew a place. For the same reason that our county no longer offered many services this facility no longer accepts medicaid or state insurance. But we had private insurance. This facility had recently changed it's name and it took about an hour for them to actually get contacted. We left the ER with no real answers but just a phone number. After several more hours of frustration because of phone lines not working on Thursday morning I had my first real good talk with this facility. The first hurdle was our insurance. After a few hours we got word that they would cover it but it is still going to cost us at least $3,000 out of pocket. Now we are just waiting on paperwork. Days later STILL waiting on paperwork. Waiting on the records from the ER assessment I have done and sent them everything they need from me and still we wait. This facility sounds like a dream come true. They specialize with children who have emotional issues, children who are struggling to stay in the class room and children with PPD which is the blanket under which Autism is found. They do therapy in the morning and school in the afternoon. He is going to have to leave his old school behind for now. I feel like a broken record going on about this journey blah blah blah. This is a fork in the road I never ever expected. And it really isn't a fork in the road it is like we hit a roadblock and there is only one way around it. No easy detours. But then again Autism is rarely ever easy.
I pulled up to the school and let his aide know I was there. I sat in the office for several minutes alone. I could almost feel something in the air. I could see the behavioral therapists go in and out of the principal's office. A voice in my head went this is NOT good. I was hearing whispers of this needs to be on school letter head and she needs to know that her child whisper whisper whisper. I still was not prepared for the clusterfuck that I walked into.
I was walked down the hallway to where my son was holed up grunting and banging inside a cupboard. His aide was sitting on a chair in the doorway. I was led into a conference room. I knew one of them was carrying a piece of paper. I knew whatever was on that paper was not good. I could feel myself start to fall apart. We are concerned they started with. I caught a glimpse of what was on that paper and started to cry. It was a letter informing me of my son's suicidal threats. A kind of we need to cover our ass kind of letter that I needed to sign. A letter that stated my son couldn't return to school until this matter was resolved. In the middle of his meltdown and his normal I wish I would die, I wish I was never born , I don't deserve to be alive turned into something else. Once before he has asked his dad to kill him. The week before he tried to choke himself. Since Sandy Hook our district has had armed officers in every school. His officer was making his normal rounds when he heard my son banging and yelling during his meltdown. As the officer peeked in the room my son turned to him and said "please just kill me and end my nightmare". Those words spoken to that officer started a process that couldn't be stopped. We ended up in the ER of a children's hospital. The first plan was that my son needed to be sent away. About 2 1/2 hrs a way to hospital for inpatient treatment. No parents allowed. Apparently my county no longer offers any services like this. Apparently we were lucky to even get an assessment. After a few hours and several long talks with intake assessors etc they got a good sense of how my son is. They realized that sending him away would do him more harm then good. But he needed help.
At some point the intake nurse asked again about our insurance. Then she was like oh wait you have private insurance. Then she said she knew a place. For the same reason that our county no longer offered many services this facility no longer accepts medicaid or state insurance. But we had private insurance. This facility had recently changed it's name and it took about an hour for them to actually get contacted. We left the ER with no real answers but just a phone number. After several more hours of frustration because of phone lines not working on Thursday morning I had my first real good talk with this facility. The first hurdle was our insurance. After a few hours we got word that they would cover it but it is still going to cost us at least $3,000 out of pocket. Now we are just waiting on paperwork. Days later STILL waiting on paperwork. Waiting on the records from the ER assessment I have done and sent them everything they need from me and still we wait. This facility sounds like a dream come true. They specialize with children who have emotional issues, children who are struggling to stay in the class room and children with PPD which is the blanket under which Autism is found. They do therapy in the morning and school in the afternoon. He is going to have to leave his old school behind for now. I feel like a broken record going on about this journey blah blah blah. This is a fork in the road I never ever expected. And it really isn't a fork in the road it is like we hit a roadblock and there is only one way around it. No easy detours. But then again Autism is rarely ever easy.
Monday, March 18, 2013
Short changed?
Spring break lead me to taking a break from doing blog entries last week. The joys of having all 3 kids home all day long left me with barely a minute alone on the computer to gather my thoughts. Tomorrow the hubby and I and our oldest head off for our second family counseling session. I have debated over and over again in my mind if I should include the other children in this. If you only knew the debates I have in my head during the course of a day!
I have been thinking from time to time that to my other two "normal" children, it isn't quite fair how they kind of get looked over. We can't simply all decide at the last minute to go run to the store or anyplace for that matter. Most things need to be planned enough in advance so that my oldest can adjust mentally to the idea that we are deviating from the schedule of the day he has in his mind. There have been many times over the past oh 5 or 6 or 8 years that my two youngest children have had to be told. Mommy can't help/talk/listen to you right now because I am dealing with your brother. For hours at a time sometimes. With a few exceptions Spring Break was fairly smooth sailing. We started off rough and then we had very little problems the rest of the week. As I am trying to figure out how to be a better parent to my Autistic child I also need to remind myself that I need to learn to be a better parent to my other children as well. I hate admitting this but there are times when I referee as a parent I do tend to "favor" the autistic child in hopes of preventing a meltdown. My other son has noticed his brother melting down and will comment with a "oh great there he goes again" or "fine have it so you don't xyz". As I have said many times before we are really just in the beginning stages of our journey. I need to remind myself that my other children are part of this journey as well.
I have been thinking from time to time that to my other two "normal" children, it isn't quite fair how they kind of get looked over. We can't simply all decide at the last minute to go run to the store or anyplace for that matter. Most things need to be planned enough in advance so that my oldest can adjust mentally to the idea that we are deviating from the schedule of the day he has in his mind. There have been many times over the past oh 5 or 6 or 8 years that my two youngest children have had to be told. Mommy can't help/talk/listen to you right now because I am dealing with your brother. For hours at a time sometimes. With a few exceptions Spring Break was fairly smooth sailing. We started off rough and then we had very little problems the rest of the week. As I am trying to figure out how to be a better parent to my Autistic child I also need to remind myself that I need to learn to be a better parent to my other children as well. I hate admitting this but there are times when I referee as a parent I do tend to "favor" the autistic child in hopes of preventing a meltdown. My other son has noticed his brother melting down and will comment with a "oh great there he goes again" or "fine have it so you don't xyz". As I have said many times before we are really just in the beginning stages of our journey. I need to remind myself that my other children are part of this journey as well.
Sunday, March 10, 2013
It affects all of us.....
My middle son asked me a question yesterday. He asked me at the end of a very trying 2 hrs. His brother had a meltdown before , during and after we went to the store. It was an unplanned trip to the store. I typically try to avoid taking all three kids with me. My oldest son does not shop well. The grocery store, full of people and bright lights and noise, typically overstimulates him. I knew my husband would not be back from work until later. Looking back I can see that nothing I needed from the store that very instant was worth the consequences of going.
I went through the house and rounded up all 3 kids. We have to go the store for a sec. On a perfect day we wouldn't have even had to spend 15 minutes getting what we needed in the store. GRUNT. That was the first red flag I should have listened to. What I should have done was try to tell my son about 30 minutes before hand that we were going to take a trip to store. Transitions are hard for him. Normally I have to give him a "countdown" of sorts. For some reason I ignored that flag and kept pushing. I wanted to go to the store.
I got him into the car without much issue. I thought okay he is going to be able to fight this off. He will be able to right the ship that was listing to the side. I will spare you the dirty details. The ship went straight to the bottom. I should have turned around when we got to the store. But my other children had money they wanted to spend and quite honestly I am tired of them getting shortchanged some days. So I stupidly pushed ahead. I am now probably to embarrassed to step foot in that store for a while. Once we got back into the car I lost it. The days of frustration over the past few weeks were finally too much. I melted down. Big time. I cursed autism. I told autism I hate it. I told autism that I was tired of it controlling our lives. My husband picked that unfortunate time to call me and tell me he was home early.
The next hour was spent in tears. Both mommy's and kiddo's. I typically try very hard to not let my son see how this all affects me. Yesterday I couldn't stop the tears. I was crying so hard my other two children got very quiet and afraid. They both sat on either side of me and were patting me on the back. Then my son asks me the question. "Mom, is there a cure for autism?" As I had to tell him no there wasn't a cure it hit me hard. My other two children suffered as well as everybody else. They had to watch the meltdowns and the struggles. The times when I had to tell them I couldn't help them or watch them do something or whatever else because I was dealing with a meltdown or situation. I think my son was hoping I would say. Yes. Your brother will be cured in X amount of time and we can get back to normal. I could see it in his eyes. This was our normal. The hurt in his eyes made me cry even more. The advantage my autistic child has in all of this is once his meltdown or episode is over he is back to his cheerful self. It took a long time for everybody else in the family to get "over " it.
I went through the house and rounded up all 3 kids. We have to go the store for a sec. On a perfect day we wouldn't have even had to spend 15 minutes getting what we needed in the store. GRUNT. That was the first red flag I should have listened to. What I should have done was try to tell my son about 30 minutes before hand that we were going to take a trip to store. Transitions are hard for him. Normally I have to give him a "countdown" of sorts. For some reason I ignored that flag and kept pushing. I wanted to go to the store.
I got him into the car without much issue. I thought okay he is going to be able to fight this off. He will be able to right the ship that was listing to the side. I will spare you the dirty details. The ship went straight to the bottom. I should have turned around when we got to the store. But my other children had money they wanted to spend and quite honestly I am tired of them getting shortchanged some days. So I stupidly pushed ahead. I am now probably to embarrassed to step foot in that store for a while. Once we got back into the car I lost it. The days of frustration over the past few weeks were finally too much. I melted down. Big time. I cursed autism. I told autism I hate it. I told autism that I was tired of it controlling our lives. My husband picked that unfortunate time to call me and tell me he was home early.
The next hour was spent in tears. Both mommy's and kiddo's. I typically try very hard to not let my son see how this all affects me. Yesterday I couldn't stop the tears. I was crying so hard my other two children got very quiet and afraid. They both sat on either side of me and were patting me on the back. Then my son asks me the question. "Mom, is there a cure for autism?" As I had to tell him no there wasn't a cure it hit me hard. My other two children suffered as well as everybody else. They had to watch the meltdowns and the struggles. The times when I had to tell them I couldn't help them or watch them do something or whatever else because I was dealing with a meltdown or situation. I think my son was hoping I would say. Yes. Your brother will be cured in X amount of time and we can get back to normal. I could see it in his eyes. This was our normal. The hurt in his eyes made me cry even more. The advantage my autistic child has in all of this is once his meltdown or episode is over he is back to his cheerful self. It took a long time for everybody else in the family to get "over " it.
Wednesday, March 6, 2013
Opening doors
So last night was our first night of family counseling. Having never been to therapy before I had no idea what to expect. I made it clear over the phone that we were there for my son's autism. My husband, not seeing the benefit in therapy at all, grudgingly agreed to go with us. After two information booth stops and a lot of circling we finally find a place to park. I used to work on a college campus but even I was unprepared for the chaos of trying to park. Then for some reason in the parking lot my seat belt locked up on me. It was like my car was like nooooooo this is a bad idea I will not let you go type of situation. Finally I was free but I was already getting flustered. Ok where is the stupid pay thingy for the parking? I found that and then I know I can read. I can follow directions quite well. Enter your license number and then hit valid. Ok, easy enough. BEEP BEEP BEEP followed by please wait and then the same message over and over again. After 5 mins I finally said well I guess we will just get a ticket because we were going to be late.
So by this time I am beyond flustered and we still had to find the therapy clinic. Once we got there and got settled in we got all the paperwork. That is when my husband started glareing at me. Even though we were not here for marriage counseling they wanted all sorts of information about our marriage and about our childhood tramus etc. "We are NOT here for this", he hissed at me. I know I know I said. It is just silly paperwork fill it out. So then she takes us back one by one first. And she wants to know about what conflict looks like in our house. Uhm.....blank stare. I fumbled for a bit and was like I am confused. We are here for my child's autism. And then she was like she knew that but they needed to find out a bit about the home environment first. Then it dawned on me she was checking for domestic violence. Sigh, I thought man my husband is going to be pissed when he gets in here. I warned her that he was not going to be happy about this and how he was already annoyed with the personal questions on the paperwork.
Finally we all got in the room together. And boy what an awkward first 15 mins that was. I know we were being watched because I could hear the person on the other side of the two way mirror. I know from the beginning that we would be used as a teaching guide etc so I wasn't upset about it. My son, having no idea what to expect, shut down. Wouldn't look at the therapist. Wouldn't talk to her. Finally she pointed him to some toys. After we got past the whole what do you hope to get from therapy business she was able to draw my son out some. After about 30 mins I thought well this isn't toooo bad. She was able to get my son to express how his mind is like a hallway full of doors. He keeps things behind each door in groups. Behind one door is his fun stuff like video games and computer things. I have a feeling that door is the one that is open the most. Behind other doors are things that scare him or upset etc. This was a analogy he had never told me before. So just when I thought things were going good our time was up. I could tell my husband was not a fan of what had just happened. He wanted to wait a month and then come back. I wanted to come back in two weeks. I had a feeling we needed to go in weekly, but even with the sliding scale twice a month is what our budget will allow. So we go back in two weeks. Maybe eventually I will learn how to open all those doors in my son's mind.
So by this time I am beyond flustered and we still had to find the therapy clinic. Once we got there and got settled in we got all the paperwork. That is when my husband started glareing at me. Even though we were not here for marriage counseling they wanted all sorts of information about our marriage and about our childhood tramus etc. "We are NOT here for this", he hissed at me. I know I know I said. It is just silly paperwork fill it out. So then she takes us back one by one first. And she wants to know about what conflict looks like in our house. Uhm.....blank stare. I fumbled for a bit and was like I am confused. We are here for my child's autism. And then she was like she knew that but they needed to find out a bit about the home environment first. Then it dawned on me she was checking for domestic violence. Sigh, I thought man my husband is going to be pissed when he gets in here. I warned her that he was not going to be happy about this and how he was already annoyed with the personal questions on the paperwork.
Finally we all got in the room together. And boy what an awkward first 15 mins that was. I know we were being watched because I could hear the person on the other side of the two way mirror. I know from the beginning that we would be used as a teaching guide etc so I wasn't upset about it. My son, having no idea what to expect, shut down. Wouldn't look at the therapist. Wouldn't talk to her. Finally she pointed him to some toys. After we got past the whole what do you hope to get from therapy business she was able to draw my son out some. After about 30 mins I thought well this isn't toooo bad. She was able to get my son to express how his mind is like a hallway full of doors. He keeps things behind each door in groups. Behind one door is his fun stuff like video games and computer things. I have a feeling that door is the one that is open the most. Behind other doors are things that scare him or upset etc. This was a analogy he had never told me before. So just when I thought things were going good our time was up. I could tell my husband was not a fan of what had just happened. He wanted to wait a month and then come back. I wanted to come back in two weeks. I had a feeling we needed to go in weekly, but even with the sliding scale twice a month is what our budget will allow. So we go back in two weeks. Maybe eventually I will learn how to open all those doors in my son's mind.
Monday, March 4, 2013
Back to the grind......
The workout grind that is.
I have always been pretty hefty. I have never been dainty or petite Even at my smallest weight I was tall and broad. In high school and college the weight started creeping on. 5 lbs here.....10 lbs a year later. When I got married I weighed about 190 lbs. I am almost 5' 10". I wasn't obese by any sense but I was teetering on really being overweight. Then a funny thing happened my first year of marriage. I was having kidney problems and my husband didn't want me working for a bit. So I stayed at home for a few months. And I sank into a depression. And I somehow managed to gain 30 lbs in a few months. In the next ten years and 3 children later I found myself in a very scary place. Sadly my weight was almost 300 lbs. The highest I ever saw on my scale was 267. But I am sure it probably went a good 10 lbs higher.
I started having some scary symptoms My blood pressure was sky high. My husband had just recovered from a heart attack and he kept nagging me to get on some medication. So I went to the Dr. Funny she never said hey why don't you lose weight. But I left the office with some medicine and a plan in my mind. By the time I went back I wanted to have lost some weight. I started watching what I ate. I had lost weight off and on during the past decade. The last time I was successful it was interrupted by baby number 3. Through diet alone I had lost 12 lbs. Then one of the best things happened to me. I had been a stay at home mom for 3 years. I landed a job overnights at a hospital Not glamorous work. I was part of the cleaning crew.
But with that job I started becoming the most active I have ever been. I was on my feet and literally running from one end of the hospital to the next. I started to lose more weight. There is nothing more motivating for me then to actually see lbs dropping off. I started really watching what I ate. I always allowed for cheat days. My main focus was cutting back on my portion sizes. If we ordered pizza I only ate two slices. After a while my body got used to eating only 2 slices and I wasn't hungry for more. I walked as much as I could at work. I ended up transferring to a job on campus. I made every step count there as well. I also had a 10 minute to and from my parking garage. Every step counted for me. The weight came off. It was slow going. I probably only lost a few lbs a month. But I had hit a big milestone 50 lbs gone. Sadly my blood pressure never improved. Apparently that was more a genetic thing vs a weight thing. Then we packed up and moved to Texas. I once again became a stay at home mom. My husband, bless his man heart, even voiced out a loud the fear I was having. "I bet you gain all that weight back since you aren't working anymore ", he said.
So here we are 9 months later. And in fact I have kept that weight off. But now it is time for my second goal. I have at least another 50 to lose. I just got an elliptical/bike to use at home. When my husband is at work I always put on my music and try to be as active as I can by cleaning and well dancing around since nobody can see me. But I have decided it time to buckle down again. So who knows. Maybe in a year I will have hit another 50 lbs. I am certainly going to try.
I have always been pretty hefty. I have never been dainty or petite Even at my smallest weight I was tall and broad. In high school and college the weight started creeping on. 5 lbs here.....10 lbs a year later. When I got married I weighed about 190 lbs. I am almost 5' 10". I wasn't obese by any sense but I was teetering on really being overweight. Then a funny thing happened my first year of marriage. I was having kidney problems and my husband didn't want me working for a bit. So I stayed at home for a few months. And I sank into a depression. And I somehow managed to gain 30 lbs in a few months. In the next ten years and 3 children later I found myself in a very scary place. Sadly my weight was almost 300 lbs. The highest I ever saw on my scale was 267. But I am sure it probably went a good 10 lbs higher.
I started having some scary symptoms My blood pressure was sky high. My husband had just recovered from a heart attack and he kept nagging me to get on some medication. So I went to the Dr. Funny she never said hey why don't you lose weight. But I left the office with some medicine and a plan in my mind. By the time I went back I wanted to have lost some weight. I started watching what I ate. I had lost weight off and on during the past decade. The last time I was successful it was interrupted by baby number 3. Through diet alone I had lost 12 lbs. Then one of the best things happened to me. I had been a stay at home mom for 3 years. I landed a job overnights at a hospital Not glamorous work. I was part of the cleaning crew.
But with that job I started becoming the most active I have ever been. I was on my feet and literally running from one end of the hospital to the next. I started to lose more weight. There is nothing more motivating for me then to actually see lbs dropping off. I started really watching what I ate. I always allowed for cheat days. My main focus was cutting back on my portion sizes. If we ordered pizza I only ate two slices. After a while my body got used to eating only 2 slices and I wasn't hungry for more. I walked as much as I could at work. I ended up transferring to a job on campus. I made every step count there as well. I also had a 10 minute to and from my parking garage. Every step counted for me. The weight came off. It was slow going. I probably only lost a few lbs a month. But I had hit a big milestone 50 lbs gone. Sadly my blood pressure never improved. Apparently that was more a genetic thing vs a weight thing. Then we packed up and moved to Texas. I once again became a stay at home mom. My husband, bless his man heart, even voiced out a loud the fear I was having. "I bet you gain all that weight back since you aren't working anymore ", he said.
So here we are 9 months later. And in fact I have kept that weight off. But now it is time for my second goal. I have at least another 50 to lose. I just got an elliptical/bike to use at home. When my husband is at work I always put on my music and try to be as active as I can by cleaning and well dancing around since nobody can see me. But I have decided it time to buckle down again. So who knows. Maybe in a year I will have hit another 50 lbs. I am certainly going to try.
Thursday, February 28, 2013
What are you looking at?
I could feel the eyes upon us. The curious stares. The, what the heck is wrong with that kid, looks in people's eyes. I was at the grocery store with my oldest. Normally during the day when my children are with me in the store I am used to a few looks. Mainly non judgmental but curious looks about why isn't that child in school. We had just finished up at the dentist.
My son is a very sensory sensitive child. He gets overloaded easily with stimuli. Any change in his routine makes it difficult for him to calm down. Not only was he out of school before lunch but he had just had nitrous gas at the dentist. He was overly concerned with the fact that he couldn't feel half of his mouth. Most children that have the famous laughing gas at the dentist are a bit loopy. Sometimes for my son it makes it overly edgy.
On a good day my son flaps his hands, and hums to himself off and on all day. The more stimulated he is the more the will stim. Some days if he is under stimulated he will stim. My son is a stimmer to say the least. He has set patterns of hand movements he does. They vary in intensity Sometimes they are small movements sometimes he stims so hard you can hear him across the room.
Aisle after aisle in the grocery store my son bounced along. Moving his hands to a rhythm that only he could hear in his head. Humming along to some tune nobody else could hear. As I pushed my cart through the store he followed me. Humming and bouncing and stimming and twirling occasionally. One by one the fellow shoppers stopped what they were doing to watch him. Looking at him curiously. Wondering what was "wrong" with that kid. In my mind he was well behaved. He followed me and helped me fill the cart. He didn't fuss or complain or ask for items.
But I could feel the stares. I saw the dirty looks. The shaking of heads. I am sure many of them were looking at him and at me wondering why the heck didn't I discipline my child in the store. What kind of a mother would allow their child to hum and dance and flap his hands at a grocery store. Well this kind of mother. The kind of mother, who understands, that his behavior serves a purpose for his body. The kind of mother who is allowing her son to be him. Regardless of how it looks.
Moki
My son is a very sensory sensitive child. He gets overloaded easily with stimuli. Any change in his routine makes it difficult for him to calm down. Not only was he out of school before lunch but he had just had nitrous gas at the dentist. He was overly concerned with the fact that he couldn't feel half of his mouth. Most children that have the famous laughing gas at the dentist are a bit loopy. Sometimes for my son it makes it overly edgy.
On a good day my son flaps his hands, and hums to himself off and on all day. The more stimulated he is the more the will stim. Some days if he is under stimulated he will stim. My son is a stimmer to say the least. He has set patterns of hand movements he does. They vary in intensity Sometimes they are small movements sometimes he stims so hard you can hear him across the room.
Aisle after aisle in the grocery store my son bounced along. Moving his hands to a rhythm that only he could hear in his head. Humming along to some tune nobody else could hear. As I pushed my cart through the store he followed me. Humming and bouncing and stimming and twirling occasionally. One by one the fellow shoppers stopped what they were doing to watch him. Looking at him curiously. Wondering what was "wrong" with that kid. In my mind he was well behaved. He followed me and helped me fill the cart. He didn't fuss or complain or ask for items.
But I could feel the stares. I saw the dirty looks. The shaking of heads. I am sure many of them were looking at him and at me wondering why the heck didn't I discipline my child in the store. What kind of a mother would allow their child to hum and dance and flap his hands at a grocery store. Well this kind of mother. The kind of mother, who understands, that his behavior serves a purpose for his body. The kind of mother who is allowing her son to be him. Regardless of how it looks.
Moki
Wednesday, February 27, 2013
The Search For Answers
Somehow, for some reason, I kind of thought that we had won the battle. My son is now 11 years old. Probably from the time he was 3 I kind of knew something was, well rather odd. His speech was delayed and while his pediatrician pestered me about it, I poo pawed it. I was in speech therapy until the 6th grade. I figured it was some genetic thing and I wasn't too terribly bothered by it. It wasn't until my second son got to be a toddler that I started noting marked differences with their speech. Then he started doing something very strange indeed. He started flapping his hands. He started kindergarten and even though I found out later his teacher had seen several red flags, nothing was ever said to me about it. We had moved and had a different pediatrician by this time. At one point in a Dr's visit my son started flapping his hands. I thought BINGO !! The Dr had seen it and I was going to get an answer. The reply I got was even baffling. This well studied, well educated Dr, who I had gotten rave reviews, about simply said, "Well that is interesting".
That was not what I was looking for. I wanted answers. Why does my son does this? Why does he shut down? Why can he not act normal Why can he not go from task to task? Why why why? I had so many Whys. Later on with a different Dr I got a diagnosis of Sensory Integration Dysfunction. Which made sense for all the sensory issues he had with sounds, smells, textures etc. I got a referral to the autism research center nearby. Then I got several cold slaps of reality. I had pretty much been told my son was autistic. But then I was told that until the center was done with him there was nothing more they could do for me. I found out that health insurance ( at the time) was not required to cover anything autism related. The testing that they wanted to do on my son would cost me several thousand dollars. I didn't have ten dollars.
So began 5 years of everybody knowing my son was autistic but not having a "formal" diagnosis. 5 years of dealing with a rural school district who had made it clear that in their mind my son didn't have a disability. 5 years of trying to find strategies online to help my son. We had good years. We had bad years. Then this past year we moved to Texas. In a matter of a few months my son was formally diagnosed by the school here. He has a formal IEP with the school. Things I had given up on ever getting before I got so easily here. I thought PHEW. My hard work is over. Battle won!!!
Not so fast. I am not sure this battle will ever be won. Because even though I finally have on paper what I wanted for so long, the fact is the issues my son faces every day are the same. Same struggles. Now we have different issues. Is he taking advantage of the fact he is now officially autistic at school? How much can he control on his own? Now that is it all official where do we go in terms of doctors and the like. I think I feel more overwhelmed now then I ever did before. I thought a formal diagnosis would be the end of the road. Instead I find myself on a new road. Sometimes I feel alone on this road. I am not sure my husband will ever want to educate himself on the condition our son has. We don't agree on anything it seems now that we have this formal diagnosis. Instead of giving us the answers instead we just have new questions. So on this road we all go. My son is learning about what it means to be autistic. I am learning how to "officially" be a mother of an autistic child. We will start the search for more answers together. And maybe one day we will find them
Moki
Monday, February 25, 2013
Letter from my son
Just a quick little mini entry today. It is a letter my son just gave me. He has always been a very sensitive child and there have been many times he has said comments like "You don't love me enough" " I need more love" " I hate you" etc. Some of it I have a feeling stems from having a special needs older brother. There have been nights when the two younger children have been ignored while I am dealing with a meltdown etc. The project he is referring to is his Black History Month project that is due on Thursday. That I have nagged him about doing all weekend long.
Dear Mom,
I love the way you treat me. I'm sorry about the times I acted like I hate you. I love you and I know you love me too. We have a lot in common so I thought that we could work together on my project. Happy Black History Month.
PS I really love you mom
Love
Kyle
Sunday, February 24, 2013
Searching for Home
As I am starting this blog I have pondered what direction it would take. I am not the sort of person who likes to be pigeonholed or labeled. I could write for days about the daily struggles of having a child with autism. But I am not an autism expert. Far from it. I have also decided to be a more positive person and don't want the tone of this blog to be negative. So today I thought maybe this time I would take you back into my past a little.
I have never felt settled. Pretty sure this stems from my childhood. Growing up on average I would say my family moved about every two years. I was born in the desert in California but spent most of my early childhood in Washington State. After about 3 towns there we meandered our way to small town Missouri. Once again, after about 3 towns, we moved states again. Oklahoma was a long stay for my family. I managed to spend 3 1/2 years in one school. I then was able to spend 2 years in the area in college. I was almost feeling like an Oklahoman.
After my sophomore year of college my parents were on the move again. Back to California. Boy was I happy to be back on the West Coast. Sadly what followed were two very dark years. I could tell my parents were getting the itch to move again. At 22 I had no hometown. No roots anywhere. Two of my siblings has settled back in Missouri. So one day we packed up a car and I headed back to Mid Missouri.
Missouri is where I put down roots. I married a man who had never lived more then 45 minutes away from his hometown. We bought a house in the same small town that my parents abandoned Washington state for. I had my children there. From time to time I would bring up the adventure of moving to my husband. He would just shake his head and that would be the end of it. A decade passes. After certain situations we went from a fairly comfortable life to not being able to make it without help. It is almost almost a year to the day that my husband lost his job. We were struggling with it. Without it we were desperate. I was working full time but supporting a family of 5 on about 20,000 a year is painful.
Then one day my husband got an opportunity. He would bring home double what I was. The only catch. The job was all the way in Texas. What was ironic was we were going to be able to live in the same area that my parents had retired to. My husband is not one for change or risk. So it shocked me when he seriously started to consider moving. As of June 2012 we became Texans. Now comes the mommy guilt. I had been able to give my children what I had never had. A hometown. Roots. For many reasons the move has been good for our family. There have also been draw backs. My husband is longing for home. As we come upon 10 months here in Texas we are still searching for home. I don't know if home will be here or back in Missouri. But I know that as a family we will find home together
Moki
Friday, February 22, 2013
The Truth Hurts
Ouch!! That is what happens with truth hits you in the face. The truth can be quite painful sometimes. Recently my oldest son has started saying things like I feel like I don't belong. He has gone on to find some cute little metaphors like " I feel like the 9th slice of pizza in a 8 slice pizza". He is autistic. This official truth has only come a few weeks ago. But the real truth is this is something that I have known about my son for a very long time. The hurtful truth is that sometimes....in really dark times.....usually in a middle of a 3 hr meltdown where my son is rocking back and forth and the only communication he has is grunting at you....I wish he was normal.
That unspoken truth in my head is a painful thing for a mother to admit. That you wish that your child is something other then what they are. That when the phone rings and it is the school you don't think oh no my child is sick. No the truth is every time I see my son's school on my phone my heart sinks to my knees. I know that something small, that wouldn't even phase another child, has sent my child into a extended meltdown. Or that something as small as the lights flickering has sent him into sensory overload and he the only way he can cope with it is curl up in a ball rocking back and forth and grunting. That after 2 hrs even his wonderful aide has given up on the day with him. The uglier truth is what happened in his previous school system with him. That I will save for a rainy day blog.
I belong to many online sites. One of them is site devoted to moms. On this site I have found some of the best friends imaginable. On the flip side I have seen some really mean things. The past few weeks have been posts about special needs children. The main theme is typically along the line of why should your kid get away with "murder" at school while mine does not? Why do you think that your kid deserves special treatment or assignments or "passes" at bad behavior? Some even go as far as to say that the only thing wrong with your child is you and your parenting. The painful truth is I wish they were right. I was it was something I could fix by being a better parent.
Truth be told I adore my son. After years of giving up on getting a formal diagnosis. Years of fighting schools. Years of having people go "you should just spank him more". The truth about my son isn't his diagnosis. It is what everybody who works with him tells me. That they adore him. That he has a special place in their hearts. What a great kid he is. Truth is I wish everybody could see beneath the autism that makes him seem like a bad kid from time to time. The real truth about my son is how wonderful he really is.
Moki
Thursday, February 21, 2013
Welcome to Moki's Musings
Howdy Folks!
My name is Monique but most just call me Moki. I am in charge of a busy household with an oilfield working husband and 3 rowdy kids. I am not joking about the rowdy, some days I feel like I am a ref in the WWE. My kids vary from special needs to almost artistic genius to a drama queen. It is a loud house but one filled with love.
This blog will just be a place for my musings. I have a love of diet coke and sharp cheddar cheese. I am a novice crocheter and am a mom just starting the journey to understand her son's autism. Enjoy my musings
Moki
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