As I sit here trying to figure out what to talk about Dylynn is in the shower sitting on his shower seat meowing. Why meowing? Thats what he does when the water hitting his legs makes him feel better. Although I have no clue why he meows. I guess its just his way of saying it. If he starts singing in the shower I know he has absolutely no pain. Thats very few days.
Last night he had his knee ice packs on. He was hurting all day. Its those days that hurt my heart. Hes a trooper. Usually when that happens all he wants is to cuddle with mom and dad. However, that has posed a problem when it comes to me because hes the one that caused me to be in the boot for basically tearing my tendon while cuddling. Sigh. So, I try not to let him that close to me. Just so I dont get anymore injuries. Hard though when all you want to do is make it all better.
My oldest is having a hard time right now. Hes fixating on events that will happen in the future one next week and one 3 weeks from now. Because of his fixation his autism is coming out ten fold. This happens and it seems like he regresses. I hate this. I hate it with every ounce of my being. He has made such amazing progress and because he cant get his mind off these two things its like everything falls apart. I absolutely hate telling him things to expect in the future. I try not to. However, he knows he gets to spend the day with his grandpa because I asked in front of him. He knows hes going to came because he knows we signed him up. We have even stopped telling him what store we're going to because he cant take it if we change the lineup or add another store.
At the same time we can not let him have a computer, game system, tablet or phone. He fixates on it and does not know reality. I cant believe that he's one of the only kids that autistic that is this way. Most of the other parents I know their kids have tablets and phones and they're fine. I know not all kids are the same but theres bound to be some more kids like Chris in that respect. It makes it hard to find something for him to do. He does crosswords and puzzles and watches TV. Now though we've even had to take that from him because of his fixations on it. It's been interesting for the last 2 weeks of his summer vacation. The sad part is that it only just started.
Friday, June 9, 2017
Thursday, June 8, 2017
Lets talk about EDS
I hate talking about Ehlers Danlos Syndrome. You would think I wouldnt care but honestly now that we know what has been going on I HATE it.
I have had it all my life and its recently in the last couple of years gotten incredibly worse. I wake up every morning in pain. I go to bed every night in pain. So, while I think about what I deal with I drift off to what Dylynn has to deal with. I usually end up crying. I have gotten quite bitchy also.
Dylynn doesnt exactly know when to tell us hes in pain. He has sensory processing disorder so the way he feels pain is different. His pain threshold is high. When he finally does admit he hurts he is very whiny and tired. Like I said before hindsight to when he complained of being tired would have been awesome. I hate seeing him in pain. I feel an incredible amount of guilt. I was told it's like going through the 5 stages of grieving. I'm not sure why this is so different than learning that my child has autism or is bi-polar or so on. But it is.
He also doesnt realize that he needs to take it easy and can not be like other kids jumping around and running and have a good ole time. He forgets and ends up paying the price with pain. Right now he is on a daily med to stop his pain. Yea that doesnt work. So, we are supposed to supplement with tylenol and when he's really hurting tylenol 3. I hate hate hate having to give him so much tylenol. So, we're in the process of trying to find him pain management close to home. Not so easy. (If anyone reading this has any suggestions I would love them.)
Since this is new to me I've joined some facebook groups on the subject and quickly got upset. There is so many people that have it that have seemed to of given up. I may be tired, exhausted and need sleep but I refuse to give up. I want my sons pain to go away. I dont want him to be in a wheelchair halftime like he is. I dont want me to be in pain. I will do everything in my power to get him the help that he needs.
Sometimes though you can hit a wall. Like we have with a few things that we need to get done for Dylynn. This is why we have set up a gofundme account.
https://www.gofundme.com/Dylynnsfund
I absolutely hate hate hate asking for help. I hate asking people to help me and my kids. I'm the mother I should be able to provide everything for my kids. In this case its not that easy. So, I'm asking for help. If you read this until now thank you. I appreciate it. This is how I deal with everything going on I talk about it and tell my thoughts. I'd really like to tell EDS F U! However, that would solve nothing. So, we keep fighting.
I have had it all my life and its recently in the last couple of years gotten incredibly worse. I wake up every morning in pain. I go to bed every night in pain. So, while I think about what I deal with I drift off to what Dylynn has to deal with. I usually end up crying. I have gotten quite bitchy also.
Dylynn doesnt exactly know when to tell us hes in pain. He has sensory processing disorder so the way he feels pain is different. His pain threshold is high. When he finally does admit he hurts he is very whiny and tired. Like I said before hindsight to when he complained of being tired would have been awesome. I hate seeing him in pain. I feel an incredible amount of guilt. I was told it's like going through the 5 stages of grieving. I'm not sure why this is so different than learning that my child has autism or is bi-polar or so on. But it is.
He also doesnt realize that he needs to take it easy and can not be like other kids jumping around and running and have a good ole time. He forgets and ends up paying the price with pain. Right now he is on a daily med to stop his pain. Yea that doesnt work. So, we are supposed to supplement with tylenol and when he's really hurting tylenol 3. I hate hate hate having to give him so much tylenol. So, we're in the process of trying to find him pain management close to home. Not so easy. (If anyone reading this has any suggestions I would love them.)
Since this is new to me I've joined some facebook groups on the subject and quickly got upset. There is so many people that have it that have seemed to of given up. I may be tired, exhausted and need sleep but I refuse to give up. I want my sons pain to go away. I dont want him to be in a wheelchair halftime like he is. I dont want me to be in pain. I will do everything in my power to get him the help that he needs.
Sometimes though you can hit a wall. Like we have with a few things that we need to get done for Dylynn. This is why we have set up a gofundme account.
https://www.gofundme.com/Dylynnsfund
I absolutely hate hate hate asking for help. I hate asking people to help me and my kids. I'm the mother I should be able to provide everything for my kids. In this case its not that easy. So, I'm asking for help. If you read this until now thank you. I appreciate it. This is how I deal with everything going on I talk about it and tell my thoughts. I'd really like to tell EDS F U! However, that would solve nothing. So, we keep fighting.
Tuesday, June 6, 2017
Introductions
I suppose I should do an introduction of sorts. I'm not really sure how to do that but here goes. I'm a 39 year old married housewife. I have 3 boys 14, 13, and 11. My 14 year old has Autism, bi-polar, adhd, anxiety, depression, sensory processing disorder, oppositional defiant disorder, migraines and honestly I forget what else. My 13 year is an extreme introvert he has severe social anxiety, adhd, depression, selective mutism, allergies and generalized anxiety. My 11 year old has Intellectual Disorder, sensory processing disorder, anxiety, adhd, asthma, migraines, incontinence, EDS and again I'm probably forgetting what else he has been labeled with. Myself, I have anxiety, depression, migraines, allergies, and EDS.
All of us see the right doctors and go to counseling at least every other week if not every week. It's a lot. Seriously, have you had 3 kids that see a shrink and a counselor??? That only takes care of 4 appoints a week. Add to that pediatrician appointments, rheumatologist appointments, ortho appointments, aqua therapy appointments, and so on an so forth. Lets just say we are lucky if one day a week all that happens is Jeff goes to work and comes home and we can rest. Most of the time thats not the way it goes. Take tomorrow. Day off actually just hubs working. Nope now he has to go pick up Dylynns ETR and IEP and report card. See stuff like that happens all the time. It's just one of those things.
I'm trying to think what else I cant tell you about myself and my kids. Chris is my oldest he is very very very clingy and knows no boundaries and has no social skills but that kid is such a sweetheart. Granted you have to get to know him but he loves people that love him. Arek is very standoffish when it comes to his brothers. Given the chance he would rather be by himself than be around them. Dylynn, hes my little booger. This kid can wrap his finger around ANYONE. I have no idea how he does it but everywhere he goes he knows someone and they adore him. I was shocked when it first started happening now I'm just like ok thats who you are kid. He walks mostly with a cane. Bad days he has his wheelchair. Thankfully with the help of aqua therapy he has used the wheelchair less. I think it's me and my husband not wanting him to either. Who knows.
I guess I'll probably talk about everything involving my kids in this blog. Probably a good thing.
Like right now, Friday is going to be a full moon. So, the kids are driving me bat shit crazy. No really, if I hear "im bored" one more time I'm going to freaking scream. It's the beginning of summer break give me a little break. Seriously not enough coffee in the world. Yes I live on coffee throughout the day. It's a staple!
All of us see the right doctors and go to counseling at least every other week if not every week. It's a lot. Seriously, have you had 3 kids that see a shrink and a counselor??? That only takes care of 4 appoints a week. Add to that pediatrician appointments, rheumatologist appointments, ortho appointments, aqua therapy appointments, and so on an so forth. Lets just say we are lucky if one day a week all that happens is Jeff goes to work and comes home and we can rest. Most of the time thats not the way it goes. Take tomorrow. Day off actually just hubs working. Nope now he has to go pick up Dylynns ETR and IEP and report card. See stuff like that happens all the time. It's just one of those things.
I'm trying to think what else I cant tell you about myself and my kids. Chris is my oldest he is very very very clingy and knows no boundaries and has no social skills but that kid is such a sweetheart. Granted you have to get to know him but he loves people that love him. Arek is very standoffish when it comes to his brothers. Given the chance he would rather be by himself than be around them. Dylynn, hes my little booger. This kid can wrap his finger around ANYONE. I have no idea how he does it but everywhere he goes he knows someone and they adore him. I was shocked when it first started happening now I'm just like ok thats who you are kid. He walks mostly with a cane. Bad days he has his wheelchair. Thankfully with the help of aqua therapy he has used the wheelchair less. I think it's me and my husband not wanting him to either. Who knows.
I guess I'll probably talk about everything involving my kids in this blog. Probably a good thing.
Like right now, Friday is going to be a full moon. So, the kids are driving me bat shit crazy. No really, if I hear "im bored" one more time I'm going to freaking scream. It's the beginning of summer break give me a little break. Seriously not enough coffee in the world. Yes I live on coffee throughout the day. It's a staple!
Curve Ball
Being a special needs mom, you kind of get used to the odd and not so ordinary. However, when it has nothing to do with the normal mental health aspect of your kids, its what I consider a HUGE curve ball.
When we moved to Ohio we were in the process of trying to figure out what was going on with my youngest. He said he was tired in stores a lot. So we carried him or he rode in the cart. No biggie because he was 8. We had to do all that you have to do when you move to a new state. New car tags, new doctors, new hospitals. It was absolutely one of the worst things I think you have to do when you move. Somewhere I think I said "if I knew I would be doing this and it was so hard I totally wouldn't have moved".
We lucked out because out of the blue one day we got a flier in the mail for my sons now pediatric clinic. I think I cried when I called and they accepted us as patients. I'm sure they're second guessing that now that everyone there knows who we are and even when I call. Seriously, they have been the light at the end of the tunnel. It took almost 3 years but they were.
Dylynn was sent to about 12 different doctors and had well over 40 different tests and procedures. That kid I got to hand it to him he is amazing. He handled it rather well most days unless it involved a needle. Otherwise he was doing good. I, however, was not handling it well. Inside I was thinking omg why cant anyone tell us whats wrong why does my son have to be in pain? The tired turned out to be pain. He also has sensory processing disorder so when he said he was tired he wasn't tired he was hurting. Looking back, I cant believe how many times I was aggravated by him saying he was tired. Hindsight is a very real thing I wish I had.
We ended up in Columbus with a PA. She was nice but stopped listening to me. I have a real problem with doctors not listening to me especially when I've had to deal with so many of them. So, essentially we fired her and never went back.
Thats when I got a letter in the mail telling me of a 3rd insurance that would pick up bills of my sons if the other 2 did not. Written on this letter was his diagnosis. We had NEVER gotten his diagnosis until that letter. The words were never even thrown around as something he might have. It was a very rough way to learn what was going on with your son. I did what any mother would do. I googled that bitch. Ehlers -Danlose Syndrome. Yep will never forget those words. At least we had a name to the evils that it was doing to my son. We learned it's a connective tissue disorder and that when he hurts it's basically his knees spraining themselves over and over. Well hell who would not hurt with that. We also learned it's genetic. My husband had no traits. However, I did. I was told to get checked out. In the following weeks we got 2 new doctors in town instead of out of town, I got an appt to be checked and then came the landslide of things for dylynn. First it was a cane to walk with, then a chair for the shower, then a wheelchair. Then braces for his knees and also he's going to be checked for his ankles. It's been hard to take this all in. I'm used to mental stuff now this physical stuff. My head was spinning so fast I just wanted off the ride. I wanted my son to be ok.
Then came my appointment when a rheumatologist. I was hoping I was just a klutz. I did not want to be the one to give my baby this horrible thing that caused him so much pain. Unfortunately the doctor was really awesome and said sorry you have it too.
I was a huge mess after that. I cried for days because I was taking on the fault for Dylynn. Not what I should have done but I did. Thank god I was in counseling because if I wasnt I think I would still be a mess. Apparently in stressing about Dylynn it made my EDS come out full force. I wish it would go back into hiding. I'm having foot and hand issues. It sucks. I'm 39 years old and I cant walk without a cane. My son is 11 and sometimes he's got a cane and sometimes he's got a wheelchair. It's all very new and very hard to take in.
I wish I could deal with it like Dylynn does. He goes with the flow and only gets mad when hes hurting. Although he can no tell us when the hurting starts so he ususally ends up being in a really bad mood. Ok so if I'm hurting I'm in a bad mood but I can tell people I hurt and I choose not to. He just cant explain it all to well. So, thats our curve ball.
My other kids have autism, spd, bi-polar, anxiety, depression, severe anxiety disorder, selective mutism, and a number of other things going on. Lets just say I wont let this recent curve ball throw me off my game too much. I got parenting to do!!!
When we moved to Ohio we were in the process of trying to figure out what was going on with my youngest. He said he was tired in stores a lot. So we carried him or he rode in the cart. No biggie because he was 8. We had to do all that you have to do when you move to a new state. New car tags, new doctors, new hospitals. It was absolutely one of the worst things I think you have to do when you move. Somewhere I think I said "if I knew I would be doing this and it was so hard I totally wouldn't have moved".
We lucked out because out of the blue one day we got a flier in the mail for my sons now pediatric clinic. I think I cried when I called and they accepted us as patients. I'm sure they're second guessing that now that everyone there knows who we are and even when I call. Seriously, they have been the light at the end of the tunnel. It took almost 3 years but they were.
Dylynn was sent to about 12 different doctors and had well over 40 different tests and procedures. That kid I got to hand it to him he is amazing. He handled it rather well most days unless it involved a needle. Otherwise he was doing good. I, however, was not handling it well. Inside I was thinking omg why cant anyone tell us whats wrong why does my son have to be in pain? The tired turned out to be pain. He also has sensory processing disorder so when he said he was tired he wasn't tired he was hurting. Looking back, I cant believe how many times I was aggravated by him saying he was tired. Hindsight is a very real thing I wish I had.
We ended up in Columbus with a PA. She was nice but stopped listening to me. I have a real problem with doctors not listening to me especially when I've had to deal with so many of them. So, essentially we fired her and never went back.
Thats when I got a letter in the mail telling me of a 3rd insurance that would pick up bills of my sons if the other 2 did not. Written on this letter was his diagnosis. We had NEVER gotten his diagnosis until that letter. The words were never even thrown around as something he might have. It was a very rough way to learn what was going on with your son. I did what any mother would do. I googled that bitch. Ehlers -Danlose Syndrome. Yep will never forget those words. At least we had a name to the evils that it was doing to my son. We learned it's a connective tissue disorder and that when he hurts it's basically his knees spraining themselves over and over. Well hell who would not hurt with that. We also learned it's genetic. My husband had no traits. However, I did. I was told to get checked out. In the following weeks we got 2 new doctors in town instead of out of town, I got an appt to be checked and then came the landslide of things for dylynn. First it was a cane to walk with, then a chair for the shower, then a wheelchair. Then braces for his knees and also he's going to be checked for his ankles. It's been hard to take this all in. I'm used to mental stuff now this physical stuff. My head was spinning so fast I just wanted off the ride. I wanted my son to be ok.
Then came my appointment when a rheumatologist. I was hoping I was just a klutz. I did not want to be the one to give my baby this horrible thing that caused him so much pain. Unfortunately the doctor was really awesome and said sorry you have it too.
I was a huge mess after that. I cried for days because I was taking on the fault for Dylynn. Not what I should have done but I did. Thank god I was in counseling because if I wasnt I think I would still be a mess. Apparently in stressing about Dylynn it made my EDS come out full force. I wish it would go back into hiding. I'm having foot and hand issues. It sucks. I'm 39 years old and I cant walk without a cane. My son is 11 and sometimes he's got a cane and sometimes he's got a wheelchair. It's all very new and very hard to take in.
I wish I could deal with it like Dylynn does. He goes with the flow and only gets mad when hes hurting. Although he can no tell us when the hurting starts so he ususally ends up being in a really bad mood. Ok so if I'm hurting I'm in a bad mood but I can tell people I hurt and I choose not to. He just cant explain it all to well. So, thats our curve ball.
My other kids have autism, spd, bi-polar, anxiety, depression, severe anxiety disorder, selective mutism, and a number of other things going on. Lets just say I wont let this recent curve ball throw me off my game too much. I got parenting to do!!!
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