So many of us with special needs kiddos know the holidays, any of them with a change in routine and extra stimuli, can wreak havoc on our children's emotional status quo. Our house is no exception.
This past Sunday was the December Trifecta at our house. And I was at work.
The run down:
It was my daughter's first day of that time of the month. That alone is enough to derail her usually stable executive functioning (ability to deal with every day life). Thus, the first part of the trifecta.
The second part occurred when people (boys and girls) from her own youth group started to make fun of special needs folks. She handled it amazingly well when she explained to them how she is one of those folks. However, despite the fact that she pretty calmly explained it, and they were surprised that she was a part of the special needs community, one of them still had the audacity to tell her, "Don't get all booty hurt about it." Seriously? This is how a youth group peer treats another?
The third part happened, as I said, while I was at work. The rest of the family was at home and as instructions were given to do something, the tectonic plates shifted and the core inside my house evidently erupted into lava - lots of yelling, anger, confusion, you name it.
It's hard enough for my girl to deal with Aspergers on a day to day basis. Then you top it off with people who refuse to accept you as you are, think you're too sensitive, and won't listen to you when you try to explain what's going on. Honestly, I'm surprised she exploded. Usually, she implodes at times like this. But based on what was happening, had happened, during the day, I'm really not surprised it happened. I'm just sorry that it happened. Or am I?
I know that some of you deal with some very similar issues, if not the exact same dynamics. My hope and prayer is that we all learn from these experiences and help our kids learn from them, too. But more than just learning from them, I pray we can figure out how to help others who don't deal with this on a daily basis to understand this is OUR normal. And just because my normal looks different than yours doesn't mean it's not acceptable.
We see so many advertisements, hashtags, etc, asking for awareness of this, that, and the other. I'm pretty sure we're all AWARE of different challenges people have. Let's you and I break the mold and speak ACCEPTANCE of the differences in life's routines and challenges that special needs brings. And may we all teach each other how not to be hurtful but to be HELPFUL.
Merry Christmas, everyone! If you live with these challenges, don't let anyone make you feel bad for not attending their event. You know what you need to do for the mental health of your family. If you don't live with these challenges, don't be insulted because someone says they can't participate in your shindig. It has nothing to do with you. What DOES have to do with ALL of us is LOVE! Matthew 22:39
-Noble
Tuesday, December 15, 2015
Wednesday, September 16, 2015
Black and White OR Red All Over!
While reading through some of my past blog posts, specifically one from 2012, I came across the reminder that our instructions to our children with Aspergers need to be black and white. Crystal clear. You'd think, after five years of knowing this is what's going on, and knowing I need to be extra clear on this, I'd give black and white instructions. And yet, I failed once more. Recently.
A couple of months back, my daughter was invited to spend the day on the lake with a youth group. She'd never done that before but was excited. As I've mentioned before, the water is her home. We made sure she had snacks, sunblock, the obligatory ratty clothes. I picked out the perfect shirt for her to take with her, thinking she would wear it over her swim suit while in the lake. What I neglected to do was tell her what I expected. So, you guessed it, she didn't wear it. And while she did have sunblock on and even put some on later, if you have ever spent all day in, on, or around a lake, even with sunblock, without a t-shirt, you FRY. She fried. And had the chills that night. And was tired the next day.
I hadn't planned on her going to church the next day, even though it was Sunday. That is something I learned awhile ago in this journey - ONE event per weekend and church counts as an event for the Aspie mind. So not only was she obviously in recovery mode, she had to deal with a sunburn on top of it. Well, experience is the best teacher and she won't soon be forgetting that lesson! Within a week we had bought her an actual swim shirt and she was thrilled. Found them at Costco and they had ONE in her size! I know that was God! The slowness in timing was mine, not His. His timing is always perfect; mine, not so much.
In all of this we learn, again, to be crystal clear in the instructions we give to our amazing Aspie children. We also learn that while we wonder if they will ever survive out in "the real world", away from Mom's and Dad's protection, we have these little tastes of how they'll react to similar experiences. Best they have those FIRST experiences and "oops" within the safety of a loving family
where they can be guided and talked through what follows. And that, my lovely parents, is quite an honor!
A couple of months back, my daughter was invited to spend the day on the lake with a youth group. She'd never done that before but was excited. As I've mentioned before, the water is her home. We made sure she had snacks, sunblock, the obligatory ratty clothes. I picked out the perfect shirt for her to take with her, thinking she would wear it over her swim suit while in the lake. What I neglected to do was tell her what I expected. So, you guessed it, she didn't wear it. And while she did have sunblock on and even put some on later, if you have ever spent all day in, on, or around a lake, even with sunblock, without a t-shirt, you FRY. She fried. And had the chills that night. And was tired the next day.
I hadn't planned on her going to church the next day, even though it was Sunday. That is something I learned awhile ago in this journey - ONE event per weekend and church counts as an event for the Aspie mind. So not only was she obviously in recovery mode, she had to deal with a sunburn on top of it. Well, experience is the best teacher and she won't soon be forgetting that lesson! Within a week we had bought her an actual swim shirt and she was thrilled. Found them at Costco and they had ONE in her size! I know that was God! The slowness in timing was mine, not His. His timing is always perfect; mine, not so much.
In all of this we learn, again, to be crystal clear in the instructions we give to our amazing Aspie children. We also learn that while we wonder if they will ever survive out in "the real world", away from Mom's and Dad's protection, we have these little tastes of how they'll react to similar experiences. Best they have those FIRST experiences and "oops" within the safety of a loving family
where they can be guided and talked through what follows. And that, my lovely parents, is quite an honor!
Monday, September 14, 2015
It seems my ability to be consistent in blogging is nonexistent. So there's that.
However, it doesn't mean I don't live with the highlights and lowlights (peaks and valleys?) of Aspergers every day.
This weekend the Aspie princess is on a beach trip with her youth group. This is a GOOD thing. My girl feels at home in and near the water, so the ocean is a good place for her to be. Do I worry? Not really. Water, even the ocean, really is her friend.
New this year for her is swimming with the local high school's swim team. She willingly goes to a a gruelling swim practice four days a week. Another first for this year is actual competitive swim meets. She's been swimming with a recreational swim team every summer for the past five or so summers. This fall she does actual timed events and uses the diving block.
About that first swim meet . . .
We did prepare her for it by talking about the noise, stimuli, etc. We forgot to talk about the confusion that might occur, at the exact time of the event, that might send her into a tailspin. And it did. She imploded and ran off to face the fence, cry, breathe . . .
And she came through it. Yes, we endured stares of other adults who didn't get it. Other teens who didn't get it. But you know what? I ignored them. I helped her. And when it was time for her to swim again, even though she was the last swimmer to come in, some of her swim team members cheered her in, and even some of the competitor team's members cheered for her! Yep, I cried. Tears come to my eyes even now, thinking about it.
So, do I worry about her at the Ocean? No. God has her and watches over her when I can't. I know He watches over her always. As He does you and me. He has given us unique and special children. Kids that would change our lives in ways we never thought possible. And for the better!
May you be encouraged, Mom and Dad, as you do your best each day to raise these unique kids. Is it easy? No. But is it a blessing? Absolutely! Consider yourself chosen - not everyone has the wherewithal to raise such interesting people!
-Noble
However, it doesn't mean I don't live with the highlights and lowlights (peaks and valleys?) of Aspergers every day.
This weekend the Aspie princess is on a beach trip with her youth group. This is a GOOD thing. My girl feels at home in and near the water, so the ocean is a good place for her to be. Do I worry? Not really. Water, even the ocean, really is her friend.
New this year for her is swimming with the local high school's swim team. She willingly goes to a a gruelling swim practice four days a week. Another first for this year is actual competitive swim meets. She's been swimming with a recreational swim team every summer for the past five or so summers. This fall she does actual timed events and uses the diving block.
About that first swim meet . . .
We did prepare her for it by talking about the noise, stimuli, etc. We forgot to talk about the confusion that might occur, at the exact time of the event, that might send her into a tailspin. And it did. She imploded and ran off to face the fence, cry, breathe . . .
And she came through it. Yes, we endured stares of other adults who didn't get it. Other teens who didn't get it. But you know what? I ignored them. I helped her. And when it was time for her to swim again, even though she was the last swimmer to come in, some of her swim team members cheered her in, and even some of the competitor team's members cheered for her! Yep, I cried. Tears come to my eyes even now, thinking about it.
So, do I worry about her at the Ocean? No. God has her and watches over her when I can't. I know He watches over her always. As He does you and me. He has given us unique and special children. Kids that would change our lives in ways we never thought possible. And for the better!
May you be encouraged, Mom and Dad, as you do your best each day to raise these unique kids. Is it easy? No. But is it a blessing? Absolutely! Consider yourself chosen - not everyone has the wherewithal to raise such interesting people!
-Noble
Thursday, April 17, 2014
Time
It's been over a YEAR since I've posted here! I am so sorry! And I have no good reason to give you. Here this blog is supposed to help all of you as you traverse this strange trail called Aspergers and I've been MIA.
Since I last posted, I know the DSM (the manual that categorizes psychological disorders et al.) has removed the diagnosis (dx) of Aspergers and just lumped it into the Autism category. Autism is such a wide spectrum, though, isn't it? One person can say, "My child has autism" and they could mean anything from non-verbal to has what looks like two-year-old meltdowns even though they're fifteen!
I don't know about you but my journey on this trail has made me much more aware of how people are really doing than how I perceive they might be doing. For example, I've noticed more that when cashiers look mad and distant at the store, they're usually just not feeling well. Or if my son, who is gifted (and that's a whole other set of issues, right there!) says he cannot do something (such as a school assignment right that moment) he literally might not be able to even though I might think he can!
This school year my daughter has started her freshman year of high school. What I've learned since the beginning is she's not as independent at her work as I think she should be, she may not graduate in the expected four year time frame, and while she does have a mind for science, her high school level biology course is taking a lot out of her. Not only that but there are gaps missing in her math, so we will probably be backing her up a bit in that.
Now, if I were to be worrying about mankind's opinion about all this, I would probably stress myself out even more than I was earlier this year (2014)when I landed in the Emergency Room more than once due to stress! However, I remind myself it really doesn't matter what anyone else thinks. I need to do what's right by my daughter. If we've identified some gaps in her education, we can back up and get her to where she needs to be before moving on. THAT's what is important! That and letting her know, daily, that her parents love her, and most importantly, GOD loves her!
Time is fleeting, the Bible says, and we've all seen the truth of that! Regardless of what anyone else, who isn't traversing the journey you're on, thinks, you the concerned and involved parent, need to follow your gut and get the services and/or diagnoses you believe your child needs, whether she is 4 or 24. We do our kids no favors by trying to get them to "keep up with their peers" when they just aren't ready. Use your time wisely, moms and dads! Your kiddos will most likely only be with you for a little while longer before life happens and you wonder why your house is so quiet! (I'm not there yet, either, but I keep hearing that's what happens!)
Peace and blessings to you!
-Noble
Since I last posted, I know the DSM (the manual that categorizes psychological disorders et al.) has removed the diagnosis (dx) of Aspergers and just lumped it into the Autism category. Autism is such a wide spectrum, though, isn't it? One person can say, "My child has autism" and they could mean anything from non-verbal to has what looks like two-year-old meltdowns even though they're fifteen!
I don't know about you but my journey on this trail has made me much more aware of how people are really doing than how I perceive they might be doing. For example, I've noticed more that when cashiers look mad and distant at the store, they're usually just not feeling well. Or if my son, who is gifted (and that's a whole other set of issues, right there!) says he cannot do something (such as a school assignment right that moment) he literally might not be able to even though I might think he can!
This school year my daughter has started her freshman year of high school. What I've learned since the beginning is she's not as independent at her work as I think she should be, she may not graduate in the expected four year time frame, and while she does have a mind for science, her high school level biology course is taking a lot out of her. Not only that but there are gaps missing in her math, so we will probably be backing her up a bit in that.
Now, if I were to be worrying about mankind's opinion about all this, I would probably stress myself out even more than I was earlier this year (2014)when I landed in the Emergency Room more than once due to stress! However, I remind myself it really doesn't matter what anyone else thinks. I need to do what's right by my daughter. If we've identified some gaps in her education, we can back up and get her to where she needs to be before moving on. THAT's what is important! That and letting her know, daily, that her parents love her, and most importantly, GOD loves her!
Time is fleeting, the Bible says, and we've all seen the truth of that! Regardless of what anyone else, who isn't traversing the journey you're on, thinks, you the concerned and involved parent, need to follow your gut and get the services and/or diagnoses you believe your child needs, whether she is 4 or 24. We do our kids no favors by trying to get them to "keep up with their peers" when they just aren't ready. Use your time wisely, moms and dads! Your kiddos will most likely only be with you for a little while longer before life happens and you wonder why your house is so quiet! (I'm not there yet, either, but I keep hearing that's what happens!)
Peace and blessings to you!
-Noble
Monday, August 6, 2012
Forgive me?
How are you? Have you been having a good summer? Great summer? Terrible summer?
I've been thinking for awhile that I need to visit here and update the blog. I had NO idea that
I hadn't been here since April! So, I ask your forgiveness.
Yep, if I were you, I might roll my eyes, too, or think, "You know she's going to do this again",
etc. And you're both justified and correct. However, remember this blog is not really about you or
me but about facing and dealing with the challenges of Asperger's Syndrome. So please don't let
my faults keep you away from occasional good information!
Speaking of forgiveness, do you sometimes find it difficult to forgive the Aspie in your life? When the Aspie in your life has a meltdown do you ever think (and I know you do!), "Again? Why can't they CONTROL it? What is it THIS time?" Or the Aspie in your life does something that you think they should KNOW not to do? And then when it's pointed out that their action was wrong, they either shrug or don't do anything, including saying they're sorry. Annoying, isn't it?
Remember, Asperger's Syndrome is a different order, a different wiring of the brain, not necessarily a disorder. So, the answers to the above questions are: yes, again. No, he/she probably cannot control the meltdown. They may not even know what caused it. And one of the best explanations I heard as to why they don't say they're sorry:
"If they did it on accident and you know it was an accident, why should they have to say they're sorry?
If they did it on purpose, then they're not sorry, so why should they have to say they're sorry?"
Most of us know that it's polite to say you're sorry. The Aspie in your life may not yet know that or may simply need reminding. Or it may never make sense to them and they won't ever say they're sorry. We must be forgiving. Don't fault your Aspie for the different wiring of his/her brain. God has a plan for him/her using just the brain he gave him/her. And the result of that plan may very well surprise you!
As for those of us who are neurotypical (aka, erroneously, normal), perhaps the Aspie in our life will some day see fit to forgive us for our difficulty in accepting someone whose brain is wired differently!
I've been thinking for awhile that I need to visit here and update the blog. I had NO idea that
I hadn't been here since April! So, I ask your forgiveness.
Yep, if I were you, I might roll my eyes, too, or think, "You know she's going to do this again",
etc. And you're both justified and correct. However, remember this blog is not really about you or
me but about facing and dealing with the challenges of Asperger's Syndrome. So please don't let
my faults keep you away from occasional good information!
Speaking of forgiveness, do you sometimes find it difficult to forgive the Aspie in your life? When the Aspie in your life has a meltdown do you ever think (and I know you do!), "Again? Why can't they CONTROL it? What is it THIS time?" Or the Aspie in your life does something that you think they should KNOW not to do? And then when it's pointed out that their action was wrong, they either shrug or don't do anything, including saying they're sorry. Annoying, isn't it?
Remember, Asperger's Syndrome is a different order, a different wiring of the brain, not necessarily a disorder. So, the answers to the above questions are: yes, again. No, he/she probably cannot control the meltdown. They may not even know what caused it. And one of the best explanations I heard as to why they don't say they're sorry:
"If they did it on accident and you know it was an accident, why should they have to say they're sorry?
If they did it on purpose, then they're not sorry, so why should they have to say they're sorry?"
Most of us know that it's polite to say you're sorry. The Aspie in your life may not yet know that or may simply need reminding. Or it may never make sense to them and they won't ever say they're sorry. We must be forgiving. Don't fault your Aspie for the different wiring of his/her brain. God has a plan for him/her using just the brain he gave him/her. And the result of that plan may very well surprise you!
As for those of us who are neurotypical (aka, erroneously, normal), perhaps the Aspie in our life will some day see fit to forgive us for our difficulty in accepting someone whose brain is wired differently!
Thursday, April 19, 2012
Again??
She had a meltdown this morning. Again. I had to decide what to do. Again. I wondered WHAT to do. Again.
Do you ever feel like this? Like you have to tread on eggshells. Again. Or you must remember to be as literal as possible. Again.
My daughter is 13. She's already hit puberty, hormones and all. Thus, I've also had to teach her the finer points of shaving. She's been shaving for over a year now. Last night I told her to shave her legs and arms when she took her shower. She agreed to shave her legs and then said, "I don't know how to shave my arms. You never showed me how.". It took me a minute to figure out that while I was thinking 'under arms' my daughter was thinking of her literal entire arm! Needed to think in black and white terms. Again.
This morning, while I know she is very tired, I did make sure to give her a literal time for when I wanted her to do something. Well, evidently that's not good enough for when your Aspie child is completely exhausted. We had a meltdown. Again.
I wonder I'd I'll ever have a moment where I don't have to think "Again??" with her but whether or not I do, God evidently gave this child to ME, and my husband, for a reason. And so I take heart in the Scriptures that encourage us to:
"Do not grow weary in doing good"
And
"Come to Me all who are weary and I will give you rest."
Along with
"In this world you will have trouble but take heart for I have overcome the world."
So, even if I have to deal with another meltdown, again, or wonder what to do, again, I know that the God of the Universe understands and He has put you here as well. We are not alone in this! We have each other. So, welcome, friends! Be strong and courageous! And when you can't be strong on your own, lean on Him. He can handle anything you throw His way.
-Noble
Sunday, March 4, 2012
I've been distract . . .oh, why is my desk so dusty . . .
Bunny trails. Familiar with those? You begin with matching your loose socks together and discover one that belongs to your son. You go to put it in his drawer and notice his dirty clothes on the floor, so you decide to start the laundry. Then you remember the baseball uniform needs to be washed because pictures are tomorrow. Oh, that's right, you're supposed to bring a snack. So now you go to the grocery store. But before you go to the store, do you need things for dinner? Oh, and don't forget the coupons! etc, etc, etc.
We all get distracted and evidently I've been distracted for over two months now since I haven't posted a single thing here. Oops.
Yep, you're right, I did make a promise a few months back and have failed miserably in keeping that promise. Part of the problem is that I get so distracted. What about your unique child? Do they struggle with distraction? Or maybe they're not "distracted" necessarily because they're hyperfocused on something. Drives you nuts when they don't hear you, doesn't it?
Remember, these kids are Aspergers kids. Their brains are wired differently. We need to remember that getting impatient and upset when they don't respond to us in the way WE think they should does no one any good and will probably just make the situation worse. Take a deep breath, Mom and Dad, and think about ways to interact with your kid that you know WILL work. Don't know what will work? Well, stop whatever you're doing now that isn't working and try something different. Remember, your Aspie child is equally frustrated but they need your help. So please help.
-Noble
We all get distracted and evidently I've been distracted for over two months now since I haven't posted a single thing here. Oops.
Yep, you're right, I did make a promise a few months back and have failed miserably in keeping that promise. Part of the problem is that I get so distracted. What about your unique child? Do they struggle with distraction? Or maybe they're not "distracted" necessarily because they're hyperfocused on something. Drives you nuts when they don't hear you, doesn't it?
Remember, these kids are Aspergers kids. Their brains are wired differently. We need to remember that getting impatient and upset when they don't respond to us in the way WE think they should does no one any good and will probably just make the situation worse. Take a deep breath, Mom and Dad, and think about ways to interact with your kid that you know WILL work. Don't know what will work? Well, stop whatever you're doing now that isn't working and try something different. Remember, your Aspie child is equally frustrated but they need your help. So please help.
-Noble
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