My Mega Update Post
Wow, what's up with me and the absentee blogging, huh? Maybe I'm just in a blogging funk or something, but I just haven't felt like getting on here lately. Nothing's wrong - nothing like that - but I do get this way from time to time and I guess this is one of those times. Of course, this probably means that I'll be blogging like a mad fiend for the next week or so... that's kind of my pattern. :-)
So now, instead of writing short little posts about this or that, I have to cram everything into a very lengthy, very wordy, possibly sleep-inducing post.
Let's see. What's been going on?
Well, RAD behaviors are on the rise in our little household. If I'm gone from blogging for awhile, you can generally assume that it's something behavior related.
Nandi received botox injections a week ago and I swear her RAD behaviors have gone through the roof. Things had gotten 90% better over the last month. 90%!! She was such a joy to be around... it was like the spring and the summer were some horrible nightmare that I actually got to wake up from...but then we went and let her have botox on her leg and BAM! right back to where we were last Spring.... and just let me say that it was the day after her botox injections at the end of February when her behavior took a nose dive.
I had mentioned it over the summer to her neurologist but he kind of dismissed it saying that he's never heard of botox injections causing a personality change. But the day after she got them last Thursday, she tried to choke me, kicked Noah in the head, and her speech started slurring. Lots and lot of baby talk. "Nandi, would you like a snack?" "Gaa! Gaa! Gaa gaaa ga!"
And her poor teacher! She's begging us not to let Nandi get botox again. She remembers the instant behavior changes in the classroom after February and now she looks like death warmed over every time she brings Nandi to the van when school's over. I swear I see relief in her eyes as we pull away at the end of each day.
So that's what's going on with Nandi.
With Eli, he's working us over pretty good. He's such a great, sweet kid. A heart of gold. But boy does he try to manipulate his momma. And he and Nandi are like oil and water. Thank goodness all our neighbors are elderly and hard of hearing b/c if we lived in the suburbs, I'm sure the cops would've been called out to our house about 79 times already. They are 98% voicebox, I swear they are. It's insane.
Right now, we've decided to keep Eli in public school. For my sanity mostly. And I'm not ashamed to admit it. Okay, I do admit that I mourn not being able to homeschool. I look at these homeschooling families and read all these homeschooling blogs and I want that - so badly. I want our kids to sit around the table as a family with each child doing their school work and me reading stories outloud to them as they drink hot chocolate. I dream of fieldtrips and making lapbooks and doing science experiments in the backyard. But it's just not going to happen. Sometimes it makes me feel like a failure - makes me feel that we're just pretty dysfunctional, really. But Sim keeps reminding me that we're dealing with a lot of issues - more than most families.
So I'm slowly coming to grips with the fact that we're a different kind of normal. And I have to learn to build a life around that.
By the way, it seems that Eli does really well once he's IN school. He loves it. But when he's home he just complains all the time. And not lightly. Like, REALLY complains. All. The. Time. But only with me. Never with Sim. Figures. Hmmph!
His teachers are still having to drag him out of the van each morning - bribing him with promises of being class leader that day or getting a treat out of the treat jar. Yesterday, one of the teachers finally saw the smirk he turned and gave me as he got out of the car with 3 teachers surrounding him. Attention seeker. You think? I told him yesterday after school that the gig is up. That the teacher saw his smirk and he looked absolutely crestfallen.
He also looked like the cat who swallowed the canary. So I didn't feel too guilty about bursting his bubble.
Honestly, I have high expectations that he's going to be an Oscar winning actor one day, make loads of money, and buy me a motorhome with a year's worth of gas.
It's a simple dream, really. One that I desperately cling onto.
Oh, by the way. We've started giving him two sprays of Bach's Rescue Remedy Sleep Aid before he goes to bed. The last two nights he hasn't woken up with night terrors or anxiety - at all! I highly recommend the stuff. We bought it at Whole Foods.
That brings us to Noah. I guess one of the reasons I haven't been blogging - besides breaking up constant fights of "I had it first! No, I did!" is that I'm trying to spend as much time as I can with Noah. I have 2 hours with him all alone each morning before we leave to pick up Nandi from Pre-K, so I just try to cram in as much time as possible with him. And, generally, when the kids are watching cartoons after school (Yep, I let my kids watch cartoons. Oh, the shame!) I hang out with Noah in his room and try to understand a bit of his world.
Last night, I spent 30 minutes just imitating him spinning wheels on his car. He would spin and spin the wheels and then touch his hand or his foot or his tongue to the wheel until it stopped. At one point, I asked him if I could try and I stuck my tongue out and he looked at me and pushed the wheel towards me just a little bit.
I know it seems like nothing, but any parent of a child who has severe autism knows that that's a huge breakthrough. I mean, Noah is great and cuddly and giggly and all, but he generally likes to be left alone and all past tries of interacting with him in his room ended up with him turning his back to me. So this is really good.
You know how on Noah's birthday I confessed that God had told me that he'd talk one day? Well, I didn't tell the whole story. I asked God how. What do I need to do? Because I'm one of those moms that will try anything. And we have. We've tried everything. We've been to every doctor. Every therapist. I'm great at scouting out new therapies for Noah. But God told me - very clearly - that the only thing I needed to do was to spend time with him. Spend time with Noah. That was all.
And you know what? That's the one thing that is the hardest thing in the world for me to do. Because it's time consuming. And there's no feedback. No interaction. No, "Wow Mom, you're awesome. I love spending time with you!" It's constant rejection. Constant. So all this time, all these years, I've been seeking out therapists and doctors and anyone or anything that could help Noah get better - and it all comes down to just spending time with him.
So that's what I'm doing. You'd think after 7 years of doing this that I'd be in a better place of healing and understanding. But it's constantly evolving. You can't put a timeline on grief. You just can't. And each day I get a little closer to seeing the big picture and God's plan for Noah's life.
That's not to say that I don't still seek out therapies and such. But all the therapies we're doing are things I can do myself with Noah at home. That I can do while spending time with him.
So there you go.
All the reasons why I haven't been blogging. Oh. And I've rediscovered the joy of reading again. I swear my English degrees ruined reading for me. For years I couldn't pick up a book without doing an internal lit crit analysis of it. And I don't count therapy books and autism books and RAD books as light, fun chick lit, either. But recently, I've started reading again. And I love it. My mom introduced me to Janet Evanovich's Stephanie Plum series and I read all 19 books (the 15 numbered and the 4 in betweens) in 6 weeks. (I'm a super fast reader.) A few days ago, I picked up an Emily Giffin book at our local used bookstore and now I'm hooked on her books. I have to sit in the car rider lane at Eli's school for 45 minutes each day. (Don't get me started on that rant and rave!). But Nandi falls asleep and Noah plays with his cars, so it gives me 45 minutes to read each day. I only have two Emily Giffin books left and then I'm out of books. Suggestions, please! Need suggestions!
Ahh, wow. I totally unloaded a weeks worth of stuff in one blog post. Are you exhausted? I feel, surprisingly, refreshed. Blogging therapy. Cheaper than seeing a psych and less fattening than chocolate. Which by the way, I have totally and utterly given up. My new vice is olives. Jalapeno stuffed olives. Garlic stuffed olives. Almond stuffed olives. Olives, olives, olives. It doesn't quite have the same ring as, "I locked my self in the bathroom with a pint of Ben & Jerry's!", but it'll do. :-)
Hope everyone has a great weekend!
So now, instead of writing short little posts about this or that, I have to cram everything into a very lengthy, very wordy, possibly sleep-inducing post.
Let's see. What's been going on?
Well, RAD behaviors are on the rise in our little household. If I'm gone from blogging for awhile, you can generally assume that it's something behavior related.
Nandi received botox injections a week ago and I swear her RAD behaviors have gone through the roof. Things had gotten 90% better over the last month. 90%!! She was such a joy to be around... it was like the spring and the summer were some horrible nightmare that I actually got to wake up from...but then we went and let her have botox on her leg and BAM! right back to where we were last Spring.... and just let me say that it was the day after her botox injections at the end of February when her behavior took a nose dive.
I had mentioned it over the summer to her neurologist but he kind of dismissed it saying that he's never heard of botox injections causing a personality change. But the day after she got them last Thursday, she tried to choke me, kicked Noah in the head, and her speech started slurring. Lots and lot of baby talk. "Nandi, would you like a snack?" "Gaa! Gaa! Gaa gaaa ga!"
And her poor teacher! She's begging us not to let Nandi get botox again. She remembers the instant behavior changes in the classroom after February and now she looks like death warmed over every time she brings Nandi to the van when school's over. I swear I see relief in her eyes as we pull away at the end of each day.
So that's what's going on with Nandi.
With Eli, he's working us over pretty good. He's such a great, sweet kid. A heart of gold. But boy does he try to manipulate his momma. And he and Nandi are like oil and water. Thank goodness all our neighbors are elderly and hard of hearing b/c if we lived in the suburbs, I'm sure the cops would've been called out to our house about 79 times already. They are 98% voicebox, I swear they are. It's insane.
Right now, we've decided to keep Eli in public school. For my sanity mostly. And I'm not ashamed to admit it. Okay, I do admit that I mourn not being able to homeschool. I look at these homeschooling families and read all these homeschooling blogs and I want that - so badly. I want our kids to sit around the table as a family with each child doing their school work and me reading stories outloud to them as they drink hot chocolate. I dream of fieldtrips and making lapbooks and doing science experiments in the backyard. But it's just not going to happen. Sometimes it makes me feel like a failure - makes me feel that we're just pretty dysfunctional, really. But Sim keeps reminding me that we're dealing with a lot of issues - more than most families.
So I'm slowly coming to grips with the fact that we're a different kind of normal. And I have to learn to build a life around that.
By the way, it seems that Eli does really well once he's IN school. He loves it. But when he's home he just complains all the time. And not lightly. Like, REALLY complains. All. The. Time. But only with me. Never with Sim. Figures. Hmmph!
His teachers are still having to drag him out of the van each morning - bribing him with promises of being class leader that day or getting a treat out of the treat jar. Yesterday, one of the teachers finally saw the smirk he turned and gave me as he got out of the car with 3 teachers surrounding him. Attention seeker. You think? I told him yesterday after school that the gig is up. That the teacher saw his smirk and he looked absolutely crestfallen.
He also looked like the cat who swallowed the canary. So I didn't feel too guilty about bursting his bubble.
Honestly, I have high expectations that he's going to be an Oscar winning actor one day, make loads of money, and buy me a motorhome with a year's worth of gas.
It's a simple dream, really. One that I desperately cling onto.
Oh, by the way. We've started giving him two sprays of Bach's Rescue Remedy Sleep Aid before he goes to bed. The last two nights he hasn't woken up with night terrors or anxiety - at all! I highly recommend the stuff. We bought it at Whole Foods.
That brings us to Noah. I guess one of the reasons I haven't been blogging - besides breaking up constant fights of "I had it first! No, I did!" is that I'm trying to spend as much time as I can with Noah. I have 2 hours with him all alone each morning before we leave to pick up Nandi from Pre-K, so I just try to cram in as much time as possible with him. And, generally, when the kids are watching cartoons after school (Yep, I let my kids watch cartoons. Oh, the shame!) I hang out with Noah in his room and try to understand a bit of his world.
Last night, I spent 30 minutes just imitating him spinning wheels on his car. He would spin and spin the wheels and then touch his hand or his foot or his tongue to the wheel until it stopped. At one point, I asked him if I could try and I stuck my tongue out and he looked at me and pushed the wheel towards me just a little bit.
I know it seems like nothing, but any parent of a child who has severe autism knows that that's a huge breakthrough. I mean, Noah is great and cuddly and giggly and all, but he generally likes to be left alone and all past tries of interacting with him in his room ended up with him turning his back to me. So this is really good.
You know how on Noah's birthday I confessed that God had told me that he'd talk one day? Well, I didn't tell the whole story. I asked God how. What do I need to do? Because I'm one of those moms that will try anything. And we have. We've tried everything. We've been to every doctor. Every therapist. I'm great at scouting out new therapies for Noah. But God told me - very clearly - that the only thing I needed to do was to spend time with him. Spend time with Noah. That was all.
And you know what? That's the one thing that is the hardest thing in the world for me to do. Because it's time consuming. And there's no feedback. No interaction. No, "Wow Mom, you're awesome. I love spending time with you!" It's constant rejection. Constant. So all this time, all these years, I've been seeking out therapists and doctors and anyone or anything that could help Noah get better - and it all comes down to just spending time with him.
So that's what I'm doing. You'd think after 7 years of doing this that I'd be in a better place of healing and understanding. But it's constantly evolving. You can't put a timeline on grief. You just can't. And each day I get a little closer to seeing the big picture and God's plan for Noah's life.
That's not to say that I don't still seek out therapies and such. But all the therapies we're doing are things I can do myself with Noah at home. That I can do while spending time with him.
So there you go.
All the reasons why I haven't been blogging. Oh. And I've rediscovered the joy of reading again. I swear my English degrees ruined reading for me. For years I couldn't pick up a book without doing an internal lit crit analysis of it. And I don't count therapy books and autism books and RAD books as light, fun chick lit, either. But recently, I've started reading again. And I love it. My mom introduced me to Janet Evanovich's Stephanie Plum series and I read all 19 books (the 15 numbered and the 4 in betweens) in 6 weeks. (I'm a super fast reader.) A few days ago, I picked up an Emily Giffin book at our local used bookstore and now I'm hooked on her books. I have to sit in the car rider lane at Eli's school for 45 minutes each day. (Don't get me started on that rant and rave!). But Nandi falls asleep and Noah plays with his cars, so it gives me 45 minutes to read each day. I only have two Emily Giffin books left and then I'm out of books. Suggestions, please! Need suggestions!
Ahh, wow. I totally unloaded a weeks worth of stuff in one blog post. Are you exhausted? I feel, surprisingly, refreshed. Blogging therapy. Cheaper than seeing a psych and less fattening than chocolate. Which by the way, I have totally and utterly given up. My new vice is olives. Jalapeno stuffed olives. Garlic stuffed olives. Almond stuffed olives. Olives, olives, olives. It doesn't quite have the same ring as, "I locked my self in the bathroom with a pint of Ben & Jerry's!", but it'll do. :-)
Hope everyone has a great weekend!
Comments
Bummer about the botox! Jeremiah's behaviors have been through the roof lately too, and I don't have anything to point to. Bummer.
Lord, give Leslie the strength she needs every day, and the hope to keep on hoping.
Blessings!
Hannah
-Chantelle
Bach's is great for K.
Homeschooling is so challenging with RAD. One kid was one thing. Two is a totally different crazy.
I totally understand the point regarding Noah too. You are his answer and his key to success. Various therapies and theories guide you but you are the key for Noah. You are an amazing Mom and I am so glad that you take the time to share with us what you are up to.
Aren't you glad you know about the Botox now?
Brother Cadfael by Ellis Peters
Blessings
Sandwich
Let me say first that I love how honest you are about your feelings. I wish when Christian was Noah's age I could have been honest enough to admit that it is hard at times to spend time with someone who is not interacting with you. It is a real feeling and a hard one to come to terms with especially when it is someone you love so much.
I am thrilled for Noah and his progress and it is HUGE! :)
I have also been through many therapies with both my kids and have found the same is true in the end that it is all about what we do at home. I think it is wise to borrow from the different therapies what works well for you and practice them at home with the person they really trust most.
I also wanted to point out that not homeschooling does NOT make you a failure! You are doing what is best for your family. You need to take care of you too!
Big (((hugs)) and lots of prayers for a peaceful week!
Bronwyn
By the way...your an awesome mom! Keep on trucking! (Read Phil 4:6-7 and Romans 5:2-5)
Erin
Love Yall.
Steph
A must: What is the What by Dave Eggers (he is a great read, a bit twisted... I love him : )
Do you think the RAD behaviors could just be a result of a loss of control during the botox. I know that my kids don't wake up all that great. Lots of screaming that just can't be soothed. My kids are usually easily soothed.
I love that God is telling you how to treat Noah. Its so wonderful that you are able to be quiet to listen. Can't wait to hear more progress.
Funny that Eli is a manipulator. Glad you see it and can just address the issue now.
Can't wait to hear more.
A nice, long blog post [boring? PLEASE. You couldn't be boring if you tried!]
Sorry to hear about the downs going on right now, but the dwell on the ups instead!
I really hope [please, I KNOW] that all the work you will put in with Noah's going to pay off this year. And in turn, I think your other kids will ease up on you this year too. :)
You do such great things - don't ever stop!!
Love, love, love
Sneha
I can't wait for the breakthrough.
God ALWAYS keeps His promises.
love,
Holly