I love to talk...but talking about myself does not come naturally... especially in person. I guess that's why I turned to blogging...because it gives me the ability to talk, without having to look in someone's eyes... which, in turn, allows me to NOT worry about what other's think... yes, I mean you. I have anxiety... and panic attacks. So the last thing I need is to worry about what someone in nowheresville Alabama or somecity new jersey thinks about my thoughts... however, I do... so I type, and then I change it, and then I change it again... it's frustrating, to say the least.
I have 3 blogs... one is mostly product reviews and general.. I love it. Then I have one I really haven't used, for my jewelry... eventually I'll get it moving...then there's this one. The one I really never intend ed on anyone reading..
But something changed. I started reading other's blogs..there are people out there that share the world... their triumphs and tribulations... their bad moments...everything. So if they can, I can to.
However, names will be changed to protect the guilty. oh wait... sorry.. innocent!!!
Thursday, February 28, 2013
Sunday, December 23, 2012
Christmas is IN!! Failure is OUT!
So every year at Christmas, I always worry about how I'm going to provide for my kids for Christmas.
I sign them up for their school programs, sal army and even toys/tots thru dshs... whatever programs are open.
Well this year, I just knew was going to be depressing for me.
My younger son started a new school this year, and this school just reopened, so they don't have a Christmas program established. Uh oh...
Sal army started thier xmas programs signup early, so by the time I got there in Nov, the normal signup time, they were closed.
I did manage to get a toy from toys/tots, however, because they choose for you, getting an appropriate toy for my special needs child is EXTREMELY difficult..
fast forward...
Thursday, my son comes home and says they earned their party in class. (They had to earn enough 'marbles' to get the party) and he HAD to have us there.
So Friday, I called the school, found out when it was, and we made it. At the end of the party, I went to the office to sign us out. The Secretary pulled me into the Principals office (uh oh..) and said:
There was a neighborhood family that came in and asked if they could adopt a few families for Christmas. Your family was on the thanksgiving help list (we'd signed up for food help) and we picked you.
(at this time, I'm tearing up...) We have several bags of gifts...do you want them?
We're not sure what's in them, but..
(TEARS FLOWING!!)
I could NOT believe it.... My prayers were answered... my son WILL have an AMAZING Christmas!!
So, to that anonymous family out there, that adopted our family for Christmas.
You have NO idea how important this was for us.. I can't thank you enough. I am SO grateful to you.
-A grateful mom
I sign them up for their school programs, sal army and even toys/tots thru dshs... whatever programs are open.
Well this year, I just knew was going to be depressing for me.
My younger son started a new school this year, and this school just reopened, so they don't have a Christmas program established. Uh oh...
Sal army started thier xmas programs signup early, so by the time I got there in Nov, the normal signup time, they were closed.
I did manage to get a toy from toys/tots, however, because they choose for you, getting an appropriate toy for my special needs child is EXTREMELY difficult..
fast forward...
Thursday, my son comes home and says they earned their party in class. (They had to earn enough 'marbles' to get the party) and he HAD to have us there.
So Friday, I called the school, found out when it was, and we made it. At the end of the party, I went to the office to sign us out. The Secretary pulled me into the Principals office (uh oh..) and said:
There was a neighborhood family that came in and asked if they could adopt a few families for Christmas. Your family was on the thanksgiving help list (we'd signed up for food help) and we picked you.
(at this time, I'm tearing up...) We have several bags of gifts...do you want them?
We're not sure what's in them, but..
(TEARS FLOWING!!)
I could NOT believe it.... My prayers were answered... my son WILL have an AMAZING Christmas!!
So, to that anonymous family out there, that adopted our family for Christmas.
You have NO idea how important this was for us.. I can't thank you enough. I am SO grateful to you.
-A grateful mom
Sunday, April 10, 2011
My 7yr old with special needs.
L.S. He has a developmental delay and he is disabled.
He has Disruptive Behavioral Disorder/Oppositional Defiance Disorder (I realize they are 2 different things... you're usually first diagnosed with DBD, and it "graduates" to ODD... he's been formally diagnosed with DBD, and the psychiatrist said "He probably could be diagnosed with ODD, since they've seen it at his school" however, it's not "recorded" yet.
He also has really bad anxiety. About everything. He's never been away from one of us, except for school, and that doesn't really count, since he won't go unless I'm there at school with him. When he first started there, I HAD to be in the room with him. Now, he just thinks that I'm in the "observation" room, which is a small room adjacent to his classroom with a double mirror that I can look thorough to see him, but he can't see me. For a while, I did stay in that room... then I got kinda tired of sitting in the dark. Plus, the school auction came around, and it's really been fun for me to participate (whole nother post)
L.S. is in therapy @ Children's hospital once a week, although, as of last week, I think we may end up switching to a different place, to get more, better services. Don't get me wrong, Children's is great...but they don't think that he's getting enough help, and they've said that there are services that he needs, that they don't have. I respect that, but it took us SO long to get him into Children's...and we're just supposed to accept "ok, it's time to go." I thought that he'd be there for a while... especially since his therapist and PCIT coach said that after PCIT, she'd be his therapist each week if we wanted. I guess I'm just confused as to what's going on. This started, because we wanted to talk to someone about medication for his issues. The doc we saw told us about what he could use, but basically said that she wouldn't prescribe now, that he should try other things first. Ok, I get it... I'm sure there are other therapies to try... there are ALWAYS other therapies. You want us to try putting holy water on his head maybe? Or, hey, I know...let's try duct taping him up to keep him from punching me. I get that he should try something else for his anxiety...but what about the meantime?
L.S. also has sleep apnea. He stops breathing during his sleep. They measured it during a sleep study once, and they averaged it, saying that he stops breathing 11.4 times per hour. This causes you to 'wake' from REM sleep, thus, you don't really get GOOD sleep. They think that it's POSSIBLE that this waking up could be causing some of his agression/attention/anxiety issues. Ok...I'm sure it is possible. So now we have a consult with the Otolaryngology (sp?) to see about a adenoid & tonsil removal... surgery, for my 5yr old. I realize that it's a normal procedure, and when I was growing up, it seems that EVERYONE got their tonsils out... but looking at all of the information on the internet... if too much tissue is removed, it could change the sound of their voice, making them sound funny... if too little is taken, it could actually regrow, causing all the pain & suffering he went through during/after surgery, well, pointless. They've also given him a CPAP machine (continuous positive airway pressure) which, for those that don't know, is basically like a backwards vacuum pumping air into your face constantly. This forces you to breathe when you stop. But... getting a 5yr old to wear it? L.S.(big) has one, and it was so difficult to get him to wear it because of how uncomfortable it is. At any rate, je's been sick lately, so we haven't even tried with the mask since we got it 2 weeks ago. It seems just as he's starting to get better, he get's worse again.
So I said all this, talking about the therapies that they want us to try before medication. Again, I understand the point they're making, but I really think that no one sees just how difficult of a child he is, difficult it is to deal with his issues... It's not like we didn't struggle with the idea of medication. We've gone through several years of his issues, constantly telling ourselves that medication wasn't an option. Now, having reached the end of our rope, we're wondering what's left besides meds. I do think that the CPAP and the CBT (cognitive behavioral therapy) for his anxiety will be helpful...but I also had high hopes for the PCIT, which, as of now, hasn't really changed anything. But to be honest, if we don't keep trying, I don't know what's left, and I'm afraid that it'll end really badly.
L.S.' school, has been a wonderful wealth of resource, and I'm so glad that we found it when we did. One of the main reasons why he was never in childcare, is that neither Ray nor I have worked since he was born (another post... I promise) and as such, we never qualified for childcare assistance. We couldn't afford to pay out of pocket, so it just never worked. I recently found out that since L.S. has a developmental delay & disabilities, and now, an IEP, he actually would have qualified for state 'school' at the age of 3. I REALLY think that a LOT would be different, if we had known that. So now, I plan on making sure that other parents of young children, especially those that show any signs of special needs, get that information. I can only imagine and daydream about how different Schwoom would be had we had those interventions early on. I also put a LOT of blame on his pediatrician at the time... When we first went to her about his issues, he was just over 3, and had recently stopped breastfeeding. We'd explained to her how he acted, and what we went through. Her response was that he "was a spirited child" and that we should say YES to everything we could, and "choose our battles" that if it was about safety, we should stand firm, otherwise, give in. She also went on to tell us that she had a child that was (if I remember correctly) 7 or 8 and she said that her child is the same way. In retrospect, it should have given us a BIG clue, and eventually it did, but nearly a year later...which, in the end, was VERY unfortunate. Instead, we followed her directions, read the books she suggested "the spirited child" and so forth...giving in to his whims, requests and so on. Eventually, we got to talking to others about his issues, and realized that something WAS wrong, and the approach she had us using was not only not helping, but in fact, as we've seen in hindsight, really made things much worse. We began seeing a general doctor for both mine and L.S. s health, and decided to switch Schwoom there. We talked to him about his issues, and he said that we ought to see someone at Children's behavioral & psych clinic. So we began the wait. 7 months later, in September, we had our first meeting with what would end up being his psychiatrist for several months. He saw her, alone, once a week, for "play" time... this consisted of them talking and playing about what "should" happen. I understand the premise behind it, but still don't think that it had any impact on anything. I think it was actually rather pointless. It's not like it changed anything, and he already knew that hitting, biting, kicking, throwing, headbutting and so on was wrong... it's getting him to stop that's the problem.
Fast forwarding... he saw her for over a half a year, when we decided that it just wasn't working out well... and at that time, we found a 'school' that would give us a scholarship, we'd only have to pay $100/month. So we went for it. (That is again, another blog post) That school turned out to be the worst thing we could have done, and caused him much more anxiety that we'd ever thought it could.
So now, he sees a therapist, and we're doing the PCIT, which, while it's not making a huge difference now, I still have hopes that, if nothing else, the teachings will be helpful eventually.
So now, I spend my days at his school with him, working on the school's auction, which in it's own right, is a sanity saver.
He has Disruptive Behavioral Disorder/Oppositional Defiance Disorder (I realize they are 2 different things... you're usually first diagnosed with DBD, and it "graduates" to ODD... he's been formally diagnosed with DBD, and the psychiatrist said "He probably could be diagnosed with ODD, since they've seen it at his school" however, it's not "recorded" yet.
He also has really bad anxiety. About everything. He's never been away from one of us, except for school, and that doesn't really count, since he won't go unless I'm there at school with him. When he first started there, I HAD to be in the room with him. Now, he just thinks that I'm in the "observation" room, which is a small room adjacent to his classroom with a double mirror that I can look thorough to see him, but he can't see me. For a while, I did stay in that room... then I got kinda tired of sitting in the dark. Plus, the school auction came around, and it's really been fun for me to participate (whole nother post)
L.S. is in therapy @ Children's hospital once a week, although, as of last week, I think we may end up switching to a different place, to get more, better services. Don't get me wrong, Children's is great...but they don't think that he's getting enough help, and they've said that there are services that he needs, that they don't have. I respect that, but it took us SO long to get him into Children's...and we're just supposed to accept "ok, it's time to go." I thought that he'd be there for a while... especially since his therapist and PCIT coach said that after PCIT, she'd be his therapist each week if we wanted. I guess I'm just confused as to what's going on. This started, because we wanted to talk to someone about medication for his issues. The doc we saw told us about what he could use, but basically said that she wouldn't prescribe now, that he should try other things first. Ok, I get it... I'm sure there are other therapies to try... there are ALWAYS other therapies. You want us to try putting holy water on his head maybe? Or, hey, I know...let's try duct taping him up to keep him from punching me. I get that he should try something else for his anxiety...but what about the meantime?
L.S. also has sleep apnea. He stops breathing during his sleep. They measured it during a sleep study once, and they averaged it, saying that he stops breathing 11.4 times per hour. This causes you to 'wake' from REM sleep, thus, you don't really get GOOD sleep. They think that it's POSSIBLE that this waking up could be causing some of his agression/attention/anxiety issues. Ok...I'm sure it is possible. So now we have a consult with the Otolaryngology (sp?) to see about a adenoid & tonsil removal... surgery, for my 5yr old. I realize that it's a normal procedure, and when I was growing up, it seems that EVERYONE got their tonsils out... but looking at all of the information on the internet... if too much tissue is removed, it could change the sound of their voice, making them sound funny... if too little is taken, it could actually regrow, causing all the pain & suffering he went through during/after surgery, well, pointless. They've also given him a CPAP machine (continuous positive airway pressure) which, for those that don't know, is basically like a backwards vacuum pumping air into your face constantly. This forces you to breathe when you stop. But... getting a 5yr old to wear it? L.S.(big) has one, and it was so difficult to get him to wear it because of how uncomfortable it is. At any rate, je's been sick lately, so we haven't even tried with the mask since we got it 2 weeks ago. It seems just as he's starting to get better, he get's worse again.
So I said all this, talking about the therapies that they want us to try before medication. Again, I understand the point they're making, but I really think that no one sees just how difficult of a child he is, difficult it is to deal with his issues... It's not like we didn't struggle with the idea of medication. We've gone through several years of his issues, constantly telling ourselves that medication wasn't an option. Now, having reached the end of our rope, we're wondering what's left besides meds. I do think that the CPAP and the CBT (cognitive behavioral therapy) for his anxiety will be helpful...but I also had high hopes for the PCIT, which, as of now, hasn't really changed anything. But to be honest, if we don't keep trying, I don't know what's left, and I'm afraid that it'll end really badly.
L.S.' school, has been a wonderful wealth of resource, and I'm so glad that we found it when we did. One of the main reasons why he was never in childcare, is that neither Ray nor I have worked since he was born (another post... I promise) and as such, we never qualified for childcare assistance. We couldn't afford to pay out of pocket, so it just never worked. I recently found out that since L.S. has a developmental delay & disabilities, and now, an IEP, he actually would have qualified for state 'school' at the age of 3. I REALLY think that a LOT would be different, if we had known that. So now, I plan on making sure that other parents of young children, especially those that show any signs of special needs, get that information. I can only imagine and daydream about how different Schwoom would be had we had those interventions early on. I also put a LOT of blame on his pediatrician at the time... When we first went to her about his issues, he was just over 3, and had recently stopped breastfeeding. We'd explained to her how he acted, and what we went through. Her response was that he "was a spirited child" and that we should say YES to everything we could, and "choose our battles" that if it was about safety, we should stand firm, otherwise, give in. She also went on to tell us that she had a child that was (if I remember correctly) 7 or 8 and she said that her child is the same way. In retrospect, it should have given us a BIG clue, and eventually it did, but nearly a year later...which, in the end, was VERY unfortunate. Instead, we followed her directions, read the books she suggested "the spirited child" and so forth...giving in to his whims, requests and so on. Eventually, we got to talking to others about his issues, and realized that something WAS wrong, and the approach she had us using was not only not helping, but in fact, as we've seen in hindsight, really made things much worse. We began seeing a general doctor for both mine and L.S. s health, and decided to switch Schwoom there. We talked to him about his issues, and he said that we ought to see someone at Children's behavioral & psych clinic. So we began the wait. 7 months later, in September, we had our first meeting with what would end up being his psychiatrist for several months. He saw her, alone, once a week, for "play" time... this consisted of them talking and playing about what "should" happen. I understand the premise behind it, but still don't think that it had any impact on anything. I think it was actually rather pointless. It's not like it changed anything, and he already knew that hitting, biting, kicking, throwing, headbutting and so on was wrong... it's getting him to stop that's the problem.
Fast forwarding... he saw her for over a half a year, when we decided that it just wasn't working out well... and at that time, we found a 'school' that would give us a scholarship, we'd only have to pay $100/month. So we went for it. (That is again, another blog post) That school turned out to be the worst thing we could have done, and caused him much more anxiety that we'd ever thought it could.
So now, he sees a therapist, and we're doing the PCIT, which, while it's not making a huge difference now, I still have hopes that, if nothing else, the teachings will be helpful eventually.
So now, I spend my days at his school with him, working on the school's auction, which in it's own right, is a sanity saver.
We call him "Mr."
J (Mr.) is 12yrs old, and the epitomy of a pre-teen. Up until he turned 12, he constantly stressed out over when he'll be a pre-teen... "mom, I'm a pre-teen!".. No, I'd reply...you're a pre-pre-teen... lol Everything is so black and white when you're that age... it's amazing.
Sometimes, I wish that I could do more for him, do better by him... I know that he's frustrated, living here, wishing he could be at his "weekend dads" house... having to put up with his little brother, who, by any standards, is the most frustrating child in the world. Hands down. I can only imagine how angry he gets when it's the end of the night, and it's 'time to hug your brother' and he has to be very careful of how he holds himself, or, watch out... L.S. will punch you... and has.
When I can (which, admittedly is not as often as I'd like) I hang out with him after L.S. goes to sleep... we'll work on his homework/school projects, or just, well, hang. Sometimes we're talking about important things, but usually it's just so I can spend time with him.
The other night, he had his science project that was due on Friday (it was Wed) and he was half-assing it big time. I told him that I'd come in and help, once I got L.S. to sleep... unfortunately, it was a LATE night for Ray, and when I finally got out of bed after getting him to sleep, it was 11:49 and Jamal was OUT... So the next morning, I just HAPPENED to be awake at 6:30 when J woke up, and I offered to help then. He got the display board, and literally was just writing on it w/a sharpie pen, or writing on lined notebook paper and gluing it to the board. I came in, and instantly my crafty/mom side woke up, and wanted to help. I got out some construction paper, scissors that cut wavy designs, and got to work. He decided on a project that, as he put it "didn't require any experiments, since I know I couldn't do them at home anyway" (Unfortunately, he's right...with L.S.' 'issues' it's hard to do anything, but something like an experiment? no, nope, no way, nuh-uh) So he chose 'bubbles'. Yes, bubbles. Like, blow bubbles, soap bubbles...bubbles. His hypothesis was that nothing else could make bubbles but soap & water. :)
So I tried to get him to be a little creative...but alas, he cares not for science, so he went the easiest route that he possibly could. I encouraged him to add in cool stuff, like recipes for bubbles and ivory soap in the microwave bubbles (that was COOL when I found it online... you take a bar of ivory soap, put it on a towel and put it in the microwave for a few minutes. What happens, is that the bar begins to bubble, until it's all 'melted' but bubbles. It will fill your entire microwave... once the bubbles pop & cool, it apparently makes a pretty cool soap design thing.) but he balked and told me that he probably wouldn't have enough room.
Come 7:30, he has to walk out the door because his dad had arrived (his dad picks him up every morning to take him to school because he doesn't qualify for transportation because we live exactly 1.89 miles from school.. and they only transport if you live 2 miles away. WHAT???) So we rushed to put away his stuff, I gave him the websites I found the information on, and off he went. He stays over at his grandmas every Thursday, and she takes him to school, so I still don't know what came of his project...
He also stays at his fathers from Friday at 6pm to Sunday at 7pm. (It's supposed to be 6pm, but his father can't seem to get it together, and stated that he can't bring him until 7...but usually, it's more like 8 when he finally arrives.) This is great for Jamal, since he has a chance to see his father and get away from his brother. Plus, he has a new brother that's a year old now @ his dad's house, so apparently that's fun for him... even though he complains that he cries all the time, that his dad isn't there much to be with him and he get's tired of hearing his dad & his girlfriend fight. oh well...can't have everything!!! lol
J is lucky that, in my opinion, at 12 he has no household chores that he's responsible for. His responsibility is to keep his brother company from 3:30ish pm (except on Mondays, when he has Grafitti art after school, and doesn't get home on the bus until 5:30-yes, they transport him for that...)until 7ish when we get L.S. ready for bed. I, personally, think that's a marvelous deal, considering that, at his age, I was responsible for cleaning half the house. My bedroom was obvious. Then, me and my sister had the house split. One got the living room, dining room and upstairs bathroom while the other got the kitchen and the downstairs bathroom. Because she was partial to doing the kitchen (dishes were pretty easy for her, and we didn't have a dishwasher...) and I preferred the vacuuming, we pretty much kept to those same duties. But every day, you had to get them done. or else. I remember on several occasions, I tried half-assing the vacuuming... HA! mom & Lonnie got me... They'd pull out a box of baking powder, and sprinkle it around the WHOLE house..under couches, tables, the piano, in cracks and groves... then say, vacuum. Yup... While it was actually kind of fun doing it that way (I could see where I'd been, plus, I could make designs) it got tiring having to move furniture.
anyway, I still think that J gets away with a lot. And I wish I could spend more time with him.
Sometimes, I wish that I could do more for him, do better by him... I know that he's frustrated, living here, wishing he could be at his "weekend dads" house... having to put up with his little brother, who, by any standards, is the most frustrating child in the world. Hands down. I can only imagine how angry he gets when it's the end of the night, and it's 'time to hug your brother' and he has to be very careful of how he holds himself, or, watch out... L.S. will punch you... and has.
When I can (which, admittedly is not as often as I'd like) I hang out with him after L.S. goes to sleep... we'll work on his homework/school projects, or just, well, hang. Sometimes we're talking about important things, but usually it's just so I can spend time with him.
The other night, he had his science project that was due on Friday (it was Wed) and he was half-assing it big time. I told him that I'd come in and help, once I got L.S. to sleep... unfortunately, it was a LATE night for Ray, and when I finally got out of bed after getting him to sleep, it was 11:49 and Jamal was OUT... So the next morning, I just HAPPENED to be awake at 6:30 when J woke up, and I offered to help then. He got the display board, and literally was just writing on it w/a sharpie pen, or writing on lined notebook paper and gluing it to the board. I came in, and instantly my crafty/mom side woke up, and wanted to help. I got out some construction paper, scissors that cut wavy designs, and got to work. He decided on a project that, as he put it "didn't require any experiments, since I know I couldn't do them at home anyway" (Unfortunately, he's right...with L.S.' 'issues' it's hard to do anything, but something like an experiment? no, nope, no way, nuh-uh) So he chose 'bubbles'. Yes, bubbles. Like, blow bubbles, soap bubbles...bubbles. His hypothesis was that nothing else could make bubbles but soap & water. :)
So I tried to get him to be a little creative...but alas, he cares not for science, so he went the easiest route that he possibly could. I encouraged him to add in cool stuff, like recipes for bubbles and ivory soap in the microwave bubbles (that was COOL when I found it online... you take a bar of ivory soap, put it on a towel and put it in the microwave for a few minutes. What happens, is that the bar begins to bubble, until it's all 'melted' but bubbles. It will fill your entire microwave... once the bubbles pop & cool, it apparently makes a pretty cool soap design thing.) but he balked and told me that he probably wouldn't have enough room.
Come 7:30, he has to walk out the door because his dad had arrived (his dad picks him up every morning to take him to school because he doesn't qualify for transportation because we live exactly 1.89 miles from school.. and they only transport if you live 2 miles away. WHAT???) So we rushed to put away his stuff, I gave him the websites I found the information on, and off he went. He stays over at his grandmas every Thursday, and she takes him to school, so I still don't know what came of his project...
He also stays at his fathers from Friday at 6pm to Sunday at 7pm. (It's supposed to be 6pm, but his father can't seem to get it together, and stated that he can't bring him until 7...but usually, it's more like 8 when he finally arrives.) This is great for Jamal, since he has a chance to see his father and get away from his brother. Plus, he has a new brother that's a year old now @ his dad's house, so apparently that's fun for him... even though he complains that he cries all the time, that his dad isn't there much to be with him and he get's tired of hearing his dad & his girlfriend fight. oh well...can't have everything!!! lol
J is lucky that, in my opinion, at 12 he has no household chores that he's responsible for. His responsibility is to keep his brother company from 3:30ish pm (except on Mondays, when he has Grafitti art after school, and doesn't get home on the bus until 5:30-yes, they transport him for that...)until 7ish when we get L.S. ready for bed. I, personally, think that's a marvelous deal, considering that, at his age, I was responsible for cleaning half the house. My bedroom was obvious. Then, me and my sister had the house split. One got the living room, dining room and upstairs bathroom while the other got the kitchen and the downstairs bathroom. Because she was partial to doing the kitchen (dishes were pretty easy for her, and we didn't have a dishwasher...) and I preferred the vacuuming, we pretty much kept to those same duties. But every day, you had to get them done. or else. I remember on several occasions, I tried half-assing the vacuuming... HA! mom & Lonnie got me... They'd pull out a box of baking powder, and sprinkle it around the WHOLE house..under couches, tables, the piano, in cracks and groves... then say, vacuum. Yup... While it was actually kind of fun doing it that way (I could see where I'd been, plus, I could make designs) it got tiring having to move furniture.
anyway, I still think that J gets away with a lot. And I wish I could spend more time with him.
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