I feel like I'm living my life in The Gray Area.
Geek and I are separating...but not really.
Bubba has Autism...but the support groups and other things (apps, books, etc) are for kids with the classic form, which he doesn't have.
Diva has cerebral palsy...but again, any support I can find is for kids with the severe form, her is mild ataxia.
Let's start with Geek and I. If we didn't have the kids, this would be really easy..."bye!"...but not only do we have the kids (and for their sake we need to stay friendly...not that anything is ugly between us we just realize we aren't working as married parents) but we need to wait until the end of the school year to even tell them on the suggestion of their psychologist. The last thing we want to do is cause any issues with them finishing out the school year.
Now, the support groups. I want support from other parents, I want their advice, their tips, their friendship. Our families really don't understand, some of them try to but until you live it day in and day out you really just don't get it. For instance, Geeks aunt and mother don't understand why we "insist" on disciplining the kids immediately...I'm not sorry, you cannot take Bubba/Diva with you to do something fun and postpone his/her punishment! The there is the snide, "Does she really need to sit in her wheelchair?" Um, yes, if we don't pace her she will tire out and meltdown. I'm sorry you are embarrassed by the wheelchair and her braces, but tough shit. Yeah, I'm not sorry about getting rid of my in-laws at all.
I wrote this back in early May. Over the next few days, I'll be posting a lot. I wrote to help me through my emotions, but I didn't want to post anything until I was in a better emotional place.
Showing posts with label asperger's. Show all posts
Showing posts with label asperger's. Show all posts
Wednesday, June 18, 2014
Monday, January 27, 2014
Please stop...
Diva wears AFO's (lower leg braces) to help with her cerebral palsy. She LOVES them. Geek and I say she views them as just another accessory. She is not bothered in the slightest by them, she got them with her favorite colors (pink and purple) and one of her favorite things is on them (ladybugs.) We know they are helping her.
Anyway, she has a little tummy and doesn't like anything tight so jeans are out of the question. She usually wears "yoga" like pants (leggings?) and they usually aren't baggy enough to go over her AFO's, so they are usually seen. For school, since they wear uniforms, she has skirts or jumpers she wears (again, no khaki pants...until I get a chance to make her some with elastic in the waist) so it's leggings or stocking or knee highs...her AFO's show.
Many people in the family have thought she was wearing cute ladybug knee socks when they have seen them peeking out from under a longer skirt or pants.
Basically, her friends, classmates, the family, anyone she is around a lot are totally used to them...as they should be.
Kids are curious, they see something they haven't seen before and they wonder what it is. There have been a few who were brave enough to ask either me or Diva about the braces. We say that they help her walk, the child usually tells her they are cute or just an "ok" and it's on the the next thing.
But...
Then there are the adults. They stare and that makes me uncomfortable. Diva doesn't notice, or if she does she just doesn't care. Have I mentioned that this child has an extremely high self-esteem and knows that she is smart, beautiful, and loved?
And with Bubba, it's worse! There is no way to tell by looking at him that he has autism, ADHD, or Tourett's. He tics, he stims, he has melt downs, he has impulse control problems. Again, kids don't really care but the adults...they can be so rude.
He doesn't need more discipline, honestly, he is probably upset because we had to make an unexpected stop and he didn't have enough time to mentally prepare himself. We don't need to yell or raise our voices with him, it will make him shut down totally; talking quietly to him is most effective. Yes, he is dancing in the frozen food section, but he isn't hurting anyone and he isn't in any ones way so stop throwing me dirty looks, he's just stimming.
Here is what I would want you to do, I can't speak for everyone, but maybe it will give you some in site:
-Don't stare! It makes me uncomfortable. If you want to know what Diva's braces are for, ASK! I'll be glad to answer most of your questions. And really, your kids aren't bothering us by asking questions, they are just being kids.
-If Diva is in her wheelchair, respect it. Offer to let me push her chair up front so she can see what's going on. Don't expect me to push her into the grass so you can take up the entire sidewalk. Don't give me dirty looks when I say "excuse me" so I can get through.
-Don't click your tongue, roll your eyes, loudly sigh, make snide remarks, etc about our parenting. There is such a thing as in invisible disease...like the 3 Bubba has! Heck, you wouldn't know about Diva's if she wasn't wearing her AFO's.
-If either kid is having a meltdown, either offer to help ("Can I give you a hand?" is the best thing to say) or go away.
-Remember, Geek and I are under a lot of stress and trying to make our kids lives as "normal" as possible. If I look like death warmed over, don't tell me how tired I look...trust me, I know! Just smile and say "hello" and don't get upset if I don't want to stay and chat, especially if I don't have the kids with me. It may be the only "me time" I get that week :0)
Anyway, she has a little tummy and doesn't like anything tight so jeans are out of the question. She usually wears "yoga" like pants (leggings?) and they usually aren't baggy enough to go over her AFO's, so they are usually seen. For school, since they wear uniforms, she has skirts or jumpers she wears (again, no khaki pants...until I get a chance to make her some with elastic in the waist) so it's leggings or stocking or knee highs...her AFO's show.
Many people in the family have thought she was wearing cute ladybug knee socks when they have seen them peeking out from under a longer skirt or pants.
Basically, her friends, classmates, the family, anyone she is around a lot are totally used to them...as they should be.
Kids are curious, they see something they haven't seen before and they wonder what it is. There have been a few who were brave enough to ask either me or Diva about the braces. We say that they help her walk, the child usually tells her they are cute or just an "ok" and it's on the the next thing.
But...
Then there are the adults. They stare and that makes me uncomfortable. Diva doesn't notice, or if she does she just doesn't care. Have I mentioned that this child has an extremely high self-esteem and knows that she is smart, beautiful, and loved?
And with Bubba, it's worse! There is no way to tell by looking at him that he has autism, ADHD, or Tourett's. He tics, he stims, he has melt downs, he has impulse control problems. Again, kids don't really care but the adults...they can be so rude.
He doesn't need more discipline, honestly, he is probably upset because we had to make an unexpected stop and he didn't have enough time to mentally prepare himself. We don't need to yell or raise our voices with him, it will make him shut down totally; talking quietly to him is most effective. Yes, he is dancing in the frozen food section, but he isn't hurting anyone and he isn't in any ones way so stop throwing me dirty looks, he's just stimming.
Here is what I would want you to do, I can't speak for everyone, but maybe it will give you some in site:
-Don't stare! It makes me uncomfortable. If you want to know what Diva's braces are for, ASK! I'll be glad to answer most of your questions. And really, your kids aren't bothering us by asking questions, they are just being kids.
-If Diva is in her wheelchair, respect it. Offer to let me push her chair up front so she can see what's going on. Don't expect me to push her into the grass so you can take up the entire sidewalk. Don't give me dirty looks when I say "excuse me" so I can get through.
-Don't click your tongue, roll your eyes, loudly sigh, make snide remarks, etc about our parenting. There is such a thing as in invisible disease...like the 3 Bubba has! Heck, you wouldn't know about Diva's if she wasn't wearing her AFO's.
-If either kid is having a meltdown, either offer to help ("Can I give you a hand?" is the best thing to say) or go away.
-Remember, Geek and I are under a lot of stress and trying to make our kids lives as "normal" as possible. If I look like death warmed over, don't tell me how tired I look...trust me, I know! Just smile and say "hello" and don't get upset if I don't want to stay and chat, especially if I don't have the kids with me. It may be the only "me time" I get that week :0)
Sunday, October 20, 2013
I Would Be So Bored With "Normal"
There is nothing normal or typical about my life. Well, there are a few things. I cook for my family...we laugh...we play games (the Minions LOVE bored games)...I spend one night a week putting their weekly pill containers together...we visit so many doctors that my kids know the drill by heart...
Wait, those last two aren't normal.
I spend Thursday nights, after the Minions are tucked into bed, filling their weekly pill containers. Diva takes two pills each day...one is a fish oil and the other to help her sleep, in addition to mirilax. Bubba takes 5.5 pills each day...two fish oils, 1.5 for ADHD, one for asthma, and the other for reflux.
Doctors visits...Diva sees a GI doctor, an orthopedic doctor and a psychiatrist on a regular basis, in addition to her family doctor. Bubba sees a pulmonolgist (for asthma) and a psychiatrist, in addition to the family doctor. Of course, they also see the dentist and eye doctor.
Did I mention before that they both get physical therapy (PT) and occupational therapy (OT) and Diva also gets speech therapy (ST)??
They have seen just about every specialty at the childrens hospital at some point in their life.
It makes me sad when we get complements like "it's great that they can swallow pills and that they don't give you a hard time taking them"..."you are so good letting me examine you"
Honestly, I wish I had to hold them down to get a shot or take meds. I wish they haven't had to experience of anesthesia. I wish I would have to sit there and watch them take medication, rather than just telling them "time for meds" and they know which slot to open. I wish they didn't know to question if they have the correct pills if the color/size/shape changes.
I wish my kids didn't know what the inside of a childrens hospital looks like. I wish I didn't have to give their teachers a full page background on them. I wish Diva could have milk, didn't need medication to help her poop every day, and that she could sleep well. I wish Bubba could make friends easily, knew a time when he didn't have daily pills to take, and didn't have to carry a nebi/inhaler everywhere.
I'd like to have just one week to enjoy my Minions without the consent worry. But it's not going to happen, and I'm ok with that. Taking Diva home after her surgery a few weeks ago, I said to Geek, "We would be so bored with our life if the kids were "normal"" He agreed.
A friend of the Geek said to him, "I don't know how you do it. I'd be mad a the world." Geeks response, "What good would it do?"
Wait, those last two aren't normal.
I spend Thursday nights, after the Minions are tucked into bed, filling their weekly pill containers. Diva takes two pills each day...one is a fish oil and the other to help her sleep, in addition to mirilax. Bubba takes 5.5 pills each day...two fish oils, 1.5 for ADHD, one for asthma, and the other for reflux.
Doctors visits...Diva sees a GI doctor, an orthopedic doctor and a psychiatrist on a regular basis, in addition to her family doctor. Bubba sees a pulmonolgist (for asthma) and a psychiatrist, in addition to the family doctor. Of course, they also see the dentist and eye doctor.
Did I mention before that they both get physical therapy (PT) and occupational therapy (OT) and Diva also gets speech therapy (ST)??
They have seen just about every specialty at the childrens hospital at some point in their life.
It makes me sad when we get complements like "it's great that they can swallow pills and that they don't give you a hard time taking them"..."you are so good letting me examine you"
Honestly, I wish I had to hold them down to get a shot or take meds. I wish they haven't had to experience of anesthesia. I wish I would have to sit there and watch them take medication, rather than just telling them "time for meds" and they know which slot to open. I wish they didn't know to question if they have the correct pills if the color/size/shape changes.
I wish my kids didn't know what the inside of a childrens hospital looks like. I wish I didn't have to give their teachers a full page background on them. I wish Diva could have milk, didn't need medication to help her poop every day, and that she could sleep well. I wish Bubba could make friends easily, knew a time when he didn't have daily pills to take, and didn't have to carry a nebi/inhaler everywhere.
I'd like to have just one week to enjoy my Minions without the consent worry. But it's not going to happen, and I'm ok with that. Taking Diva home after her surgery a few weeks ago, I said to Geek, "We would be so bored with our life if the kids were "normal"" He agreed.
A friend of the Geek said to him, "I don't know how you do it. I'd be mad a the world." Geeks response, "What good would it do?"
Thursday, October 17, 2013
Mainstream schooling...*sigh*
Bubba has an IEP (Individual Education Plan) and is mainstreamed at school, with some modifications. Basically, that means that he is in a regular education class with some extra in-class support and he gets extra time to take tests.
This keeps him with neurotypical students. Neurotypical means kids who don't have "issues" with their brain, for example: autism, seizures, etc
This is a good thing and a bad thing.
It's good because the other kids are usually good role models for how to act. They help him practice proper social interactions.
It's a bad thing because kids with Aspergers usually can't tell when someone is a friend or a bully (we dealt with this in kindergarten adn 1st grade) or when someone is friendly-teasing. And it can also leave the non-neurotypical kid feeling like an outcast.
We have been having trouble with Bubba's school over the last week-ish. We get a feeling that he is being singled out due to his Asperger's, and that the teachers/aides are relying on the other kids side of the story and not even listening to Bubba's. Kid's with Asperger's are honest to a fault. They don't understand things like the "little white lie."
I threatened to pull him out of school to home-school him. I don't want to because this child is going to be smarter than his college graduate mother before too long :0)
Our next option was to look into alternative or private schooling. There is an autism program run in our county out of a school about half an hour away. We are going to insist, at the least, that we be permitted to look into the program.
The school keeps insisting that he needs to be with neurotypical kids to "socialize" him. He started publie school in Pre-K, he is now in 2nd grade. His friends are the kids he wrestles with because they accept him for who he is. He has no friends in his class and hasn't since he started school.
"Socialization" is no longer a good enough reason to keep him in that school. Especially when I get an e-mail from one of his teachers telling me that the other students "shouldn't have to tolerate" the things he does. Well, I don't think he should have to tolerate being forced to sit still for hour at a time, or being picked on when the teachers/aides are out of ear-shot.
After he came home with wood chips all over his socks and him telling me that some kids TOOK HIS SHOES out on the playground, I asked him if he told an adult at the school. He said he did but was told not to "tattle." So when the kids pick on him, he doesn't say anything anymore.
How freaking sad is that?
We have an appointment on Monday, 10/21. I'm sure I will have to get pissy a few times.
Don't mess with the cub if you can't handle Mama!
This keeps him with neurotypical students. Neurotypical means kids who don't have "issues" with their brain, for example: autism, seizures, etc
This is a good thing and a bad thing.
It's good because the other kids are usually good role models for how to act. They help him practice proper social interactions.
It's a bad thing because kids with Aspergers usually can't tell when someone is a friend or a bully (we dealt with this in kindergarten adn 1st grade) or when someone is friendly-teasing. And it can also leave the non-neurotypical kid feeling like an outcast.
We have been having trouble with Bubba's school over the last week-ish. We get a feeling that he is being singled out due to his Asperger's, and that the teachers/aides are relying on the other kids side of the story and not even listening to Bubba's. Kid's with Asperger's are honest to a fault. They don't understand things like the "little white lie."
I threatened to pull him out of school to home-school him. I don't want to because this child is going to be smarter than his college graduate mother before too long :0)
Our next option was to look into alternative or private schooling. There is an autism program run in our county out of a school about half an hour away. We are going to insist, at the least, that we be permitted to look into the program.
The school keeps insisting that he needs to be with neurotypical kids to "socialize" him. He started publie school in Pre-K, he is now in 2nd grade. His friends are the kids he wrestles with because they accept him for who he is. He has no friends in his class and hasn't since he started school.
"Socialization" is no longer a good enough reason to keep him in that school. Especially when I get an e-mail from one of his teachers telling me that the other students "shouldn't have to tolerate" the things he does. Well, I don't think he should have to tolerate being forced to sit still for hour at a time, or being picked on when the teachers/aides are out of ear-shot.
After he came home with wood chips all over his socks and him telling me that some kids TOOK HIS SHOES out on the playground, I asked him if he told an adult at the school. He said he did but was told not to "tattle." So when the kids pick on him, he doesn't say anything anymore.
How freaking sad is that?
We have an appointment on Monday, 10/21. I'm sure I will have to get pissy a few times.
Don't mess with the cub if you can't handle Mama!
Tuesday, September 17, 2013
I keep telling myself...
I have to keep reminding myself that Bubba's brain doesn't work the way mine does. Between the Asperger's and ADHD, his wiring is just so different from mine that I have to keep telling myself he has his own way of doing things.
This has good and bad parts.
The bad is that it can take him a lot longer to do what I consider a simple task. He can't focus because he hears everything. For example, the sound of my super quiet (to me at least) dishwasher is so loud to him.
The good? He sees things and thinks things that amaze me. He has such an active imagination. The way he solves problems blow my mind. There have been a few times he has come up with a solution that Geek and I never considered.
I need to keep telling myself that we will eventually get from Point A to Point B, we just may take the scenic route.
This has good and bad parts.
The bad is that it can take him a lot longer to do what I consider a simple task. He can't focus because he hears everything. For example, the sound of my super quiet (to me at least) dishwasher is so loud to him.
The good? He sees things and thinks things that amaze me. He has such an active imagination. The way he solves problems blow my mind. There have been a few times he has come up with a solution that Geek and I never considered.
I need to keep telling myself that we will eventually get from Point A to Point B, we just may take the scenic route.
Thursday, August 29, 2013
In a bit of a daze...
We got back from Bubba's behavioural health appointment a few hours ago. Why is this blog-worthy? Because his doctor not only agrees with us that there is something more than ADHD going on with him but has diagnosed with with Asperger's as well as Tourette's Syndrome.
Let's tackle the Tourette's first. We stopped all ADHD meds on the last day of school back in June. If the medication was causing his tics, they would have stopped after we stopped the medication. He is not only still having them but they are worse and he is having more. As of now, the plan is to treat the ADHD with medication and the tics with fish oil and hope that the combination helps control the tics. There are medications to control the tics, but the side effects aren't worth starting him on them right away. And we really don't want to put him on yet another medication.
While the Tourette's is a shock, I actually think I'm more shocked about the Asperger's diagnosis.
I'm really not sure why, seeing as how I have had the suspicion this is what was going on for a few months now. I guess I was hoping the doctor would tell me I was reading too much into Bubba's quirks.
From what I understand, there is no cure or medication for the treatment of Aspergers, you just kinda manage the symptoms.
We walked into the doctors office with one diagnosis and left with three.
He is still my Bubba. He is still the funny, loving kid who is obsessed with history...and reading...and playing video/board/card games...and cheeseburgers, he loves cheeseburgers :0)
I really hope this isn't rambling, I really don't have my thoughts organized, I just knew I had to get them on paper.
Well, Diva has her gait test tomorrow, her behavioral health appointment next week, and her endoscopy next Friday. I'm sure there will be a lot to write in the coming days!
Let's tackle the Tourette's first. We stopped all ADHD meds on the last day of school back in June. If the medication was causing his tics, they would have stopped after we stopped the medication. He is not only still having them but they are worse and he is having more. As of now, the plan is to treat the ADHD with medication and the tics with fish oil and hope that the combination helps control the tics. There are medications to control the tics, but the side effects aren't worth starting him on them right away. And we really don't want to put him on yet another medication.
While the Tourette's is a shock, I actually think I'm more shocked about the Asperger's diagnosis.
I'm really not sure why, seeing as how I have had the suspicion this is what was going on for a few months now. I guess I was hoping the doctor would tell me I was reading too much into Bubba's quirks.
From what I understand, there is no cure or medication for the treatment of Aspergers, you just kinda manage the symptoms.
We walked into the doctors office with one diagnosis and left with three.
He is still my Bubba. He is still the funny, loving kid who is obsessed with history...and reading...and playing video/board/card games...and cheeseburgers, he loves cheeseburgers :0)
I really hope this isn't rambling, I really don't have my thoughts organized, I just knew I had to get them on paper.
Well, Diva has her gait test tomorrow, her behavioral health appointment next week, and her endoscopy next Friday. I'm sure there will be a lot to write in the coming days!
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