I'm a meds avoider. Maybe it is my skeptical nature... my general distrust for larger entities. Who knows. But I feel like, if I can avoid the Dr. and his meds, I'm generally better off.
Well, that is not entirely true. I do value meds, because sometimes it's the best we have here on this earth. But in general, we have avoided labels, diagnoses and meds for years. Truthfully, we have watched and intervened along the way as best we knew how. Until... It became increasingly obvious that we had done all we could and all we knew and still were at a crucial point of moving my son along in his development in ALL areas; social, educational, emotional, spiritual...
And here we are. Playing the Medicine Game. I'm sure that I built up the angst in my mind for years technically, but I was super over concerned about meds and it too greatly affecting my son and his precious personhood! But there comes a point when anything is better than nothing and TRUSTING your expert specialist is so important and such a relief!
I can not say enough good about our Psychiatrist and it is not lost on me that the entirety of us being able to see him is really no coincidence but rather the construct of a loving heavenly Father (and a fantastic earthly mother and grandmother). Really the list goes on, but it lands with us having THE BEST psychiatrist around who specializes in the disorders specifically plaguing my son. And we have seen him enough to enjoy his mild manner with just enough personality to convey gentleness and understanding and maybe even fondness, and just enough boundaries as are necessary of a physician of this type. I find him caring AND careful and a breath of fresh air! So if he recommends but does not pressure a certain med, that recommendation is going to weigh heavier than your average physician.
So we played the game. Tried the first med. helped a bit. Upped it. helped a bit more, then came the side effects. Concerning, but not alarming, we watched another week. So alarming that hospitalization procedures were discussed (in my gut I never saw that happening and it didn't)! Meds were stopped. Immediate reveal of what the meds had been helping with came flooding back with the med cessation. Saw Dr. New med determined. Discussed with therapist, hubs, my mother just to weigh the decision out. Funny how you know what you are going to do almost immediately, but you still need to go through the process of weighing it all out.
Started new med (supposed to be temporary 3-6 months), seemed ok. A bit drowsy, but definite improvement in certain areas. Upped the dose according to the instructions and obvious sedation occurred. Excellent Cognitive therapy session able to take place because the intrusive thoughts were basically shut down, but too low key! Tried to wait it out for up to 3 months, but didn't last 6 days at that small but whole dose. Contacted Dr. 2 days before Christmas and he said to half the dose and then maybe quarter it. Again with the game, we go from whole to half dose and commit to stay there for at least 4 days before possibly decreasing it again! The first 2 days after that change were quite moody. Almost hormonal. Weepy is not the usual way son behaves. But we observed that this was its worst when he was hungry. So new goal was to NOT allow tiny human to get hungry!
Now 3-4 days back down at that half dose and we see a slight return in intrusive or obsessive thinking (hopefully not a significant or debilitating increase), but his demeanor and energy stays pretty much in a nice "neuro typical" range.
He seems so much more like himself. Less hyper. Still with some easy frustration. Still with some unwanted thoughts, but seems he may find them easier to dismiss (as far as I can tell). Still near the beginning of the game. Hopeful at this point. Feel like we may be getting close to a temporary sweet spot in the case of meds, but only time will tell.
Still not a fan of meds... When he whines about not wanting to take it, I want to cry and whine back...I promise i want to. But I don't. I remind him that those sneaky sticky thought ninjas are not the kind of intruders we want to allow to have free reign, so we are shutting them out on lock down with our amazingly small half of a blue pill for the strict purpose of going through elaborate and extensive combat training on how to deal with that enemy without the actual danger of intrusion. That way, in due time, when the meds are done and the protective shield is lifted and those crazy sticky thought ninjas start trying to sneak in (cause lets be honest, we all get unwanted thoughts out of left field and even not so out of left field) he will have trained so intensely and effectively that he will be equipped to deal with them with great success!
Press on mamas! It isn't easy! Raising one of Ours is a special gift that is taking extra training for all of us! Don't forget to take breaks and when you feel like quitting, just rest. And when you have rested well enough, get back in there! I'm in it with you! Let's not grow weary!
Tuesday, December 27, 2016
A Prayer and a Pill
I'm a non-medicater... I'd just rather avoid it if I can in most cases. I have a tendency toward the crunchy way. That said, I'm not a full on Granola Bar. I can see that natural things and medicine can work beautifully hand in hand, and I'm thrilled that especially when we need it, we have the option for medicine and excellent Dr care.
That said, I love my child. Love him exactly the way he came to me via the ultimate Creator. He came full of surprises and energy. Full and I mean FULL of words. Mood that swings like the pendulum on an old cuckoo clock (only to be honest I wish it were that predictable). BUT I have a lot of logic and foresight. I can see that down the line, EVERYTHING that I have tried or had tried up to this point will not likely be enough to bring that boy to his best place as an amazing young man! I can see that sitting back and letting him mature anymore without some further interventions will put him academically further behind. Not because of intellect, but because of behavior, because of processing speed, because his mental and emotional and even social development has reached the stage where interventions are crucial.
And we can see that. And we have tried all the things. We have tried spankings (useless by the way), repeated time outs (which we still do), we have yelled, fought, cried... we have tried different schools, different homeschooling methods, we have changed curriculums and we have employed a Certified Behavior Analyst to come once a week! Nothing works or seems to work with consistency.
So we came to this in depth evaluations place for more than just the base line diagnosis of Tourrette's and what we were fairly confident was also ADHD. After sifting through our diagnosis, we landed on the decision that the anxiety may be the trigger for most of the other behaviors, so if we can take the edge off, maybe he can learn some coping skills for it and maybe many of the other behaviors would ease a bit. So, hesitantly, we began the lowest dose of Prozac. This drug has been around so long that it's an easy one! It's been studied and the side effects are pretty well known. And it worked. At least it started working. You could definitely tell a difference in the anxiety level. It really was like someone sanded off the rough edges. And the tics subsided too. And overall more even temper emerged. There was just one problem. That whole minimal percent of people that have an increase in suicidal ideation... Well we were one of those. My precious son, for no good reason, simply wished he would just not be on this earth any more. Maybe he just wouldn't wake up. Y'all. This is not OK.
His Therapist is superb. Seriously. And His wording on this was precise. He was concerned but not alarmed. I felt the same. There was no violent thoughts and no planning. But no person should have those thoughts, let alone a child. And certainly not my child! So we watched it for another week, and then made the call to stop the meds cold turkey.
We hadn't even been on them long, but the difference in medicated and non medicated was blaring! Back came the tics with avengeance... and the mood swings. I definitely saw a precious boy who was defeated. He was tired of fighting. He said daily living was simply too hard. Everything was a mental battle. He just didn't want to do it.
So here we are again, trying a new/different med. A terrifying med to his mother the non-medicator. I scare that a brain altering drug may change my kid somehow. That something that makes him unique will dwindle! So, I entered into this with lots of prayer and consultation. And research.
It became increasingly clearer that the anxiety was actually being triggered by OCD. My precious one has MANY intrusive thoughts and obsessions... not so many compulsions thankfully. BUT I don't know that I realized JUST HOW MANY we were dealing with. I'm starting to piece it together in my own head, that a great deal of his daily struggles involved just trying to shut these "sticky" thoughts down. He needed a silent head. A mental peace. Rest!
Here is where my precious boy and I prayed for a solid 20 minutes fervently that that stupid half of a blue pill would give him the help he so desperately longed for and bound from him any unwelcome side effects! And we watched (and went on vacation of course). And we noticed a lower energy level. A general ease of attitude. More cooperation. More kindness. Less repetition of instructions. It's like he can hear and compute on nearly the same speed. It's only been the first 4 days and we've only done a half dose, so with a nervousness and a prayer he swallowed that whole pill tonight and we watch and observe over the course of this coming week. Everyday, a Pill and a Prayer till we see where this takes us. Right there with you mommas! In this together!
That said, I love my child. Love him exactly the way he came to me via the ultimate Creator. He came full of surprises and energy. Full and I mean FULL of words. Mood that swings like the pendulum on an old cuckoo clock (only to be honest I wish it were that predictable). BUT I have a lot of logic and foresight. I can see that down the line, EVERYTHING that I have tried or had tried up to this point will not likely be enough to bring that boy to his best place as an amazing young man! I can see that sitting back and letting him mature anymore without some further interventions will put him academically further behind. Not because of intellect, but because of behavior, because of processing speed, because his mental and emotional and even social development has reached the stage where interventions are crucial.
And we can see that. And we have tried all the things. We have tried spankings (useless by the way), repeated time outs (which we still do), we have yelled, fought, cried... we have tried different schools, different homeschooling methods, we have changed curriculums and we have employed a Certified Behavior Analyst to come once a week! Nothing works or seems to work with consistency.
So we came to this in depth evaluations place for more than just the base line diagnosis of Tourrette's and what we were fairly confident was also ADHD. After sifting through our diagnosis, we landed on the decision that the anxiety may be the trigger for most of the other behaviors, so if we can take the edge off, maybe he can learn some coping skills for it and maybe many of the other behaviors would ease a bit. So, hesitantly, we began the lowest dose of Prozac. This drug has been around so long that it's an easy one! It's been studied and the side effects are pretty well known. And it worked. At least it started working. You could definitely tell a difference in the anxiety level. It really was like someone sanded off the rough edges. And the tics subsided too. And overall more even temper emerged. There was just one problem. That whole minimal percent of people that have an increase in suicidal ideation... Well we were one of those. My precious son, for no good reason, simply wished he would just not be on this earth any more. Maybe he just wouldn't wake up. Y'all. This is not OK.
His Therapist is superb. Seriously. And His wording on this was precise. He was concerned but not alarmed. I felt the same. There was no violent thoughts and no planning. But no person should have those thoughts, let alone a child. And certainly not my child! So we watched it for another week, and then made the call to stop the meds cold turkey.
We hadn't even been on them long, but the difference in medicated and non medicated was blaring! Back came the tics with avengeance... and the mood swings. I definitely saw a precious boy who was defeated. He was tired of fighting. He said daily living was simply too hard. Everything was a mental battle. He just didn't want to do it.
So here we are again, trying a new/different med. A terrifying med to his mother the non-medicator. I scare that a brain altering drug may change my kid somehow. That something that makes him unique will dwindle! So, I entered into this with lots of prayer and consultation. And research.
It became increasingly clearer that the anxiety was actually being triggered by OCD. My precious one has MANY intrusive thoughts and obsessions... not so many compulsions thankfully. BUT I don't know that I realized JUST HOW MANY we were dealing with. I'm starting to piece it together in my own head, that a great deal of his daily struggles involved just trying to shut these "sticky" thoughts down. He needed a silent head. A mental peace. Rest!
Here is where my precious boy and I prayed for a solid 20 minutes fervently that that stupid half of a blue pill would give him the help he so desperately longed for and bound from him any unwelcome side effects! And we watched (and went on vacation of course). And we noticed a lower energy level. A general ease of attitude. More cooperation. More kindness. Less repetition of instructions. It's like he can hear and compute on nearly the same speed. It's only been the first 4 days and we've only done a half dose, so with a nervousness and a prayer he swallowed that whole pill tonight and we watch and observe over the course of this coming week. Everyday, a Pill and a Prayer till we see where this takes us. Right there with you mommas! In this together!
Thursday, December 15, 2016
The Labels
Though I hate the labels, I know exactly what it feels like to be able to identify with someone and their diagnosis! You feel hopeful just knowing that you aren't alone! You feel encouraged cause you see restoration in them if they are further along in their journey. You feel peace... and truthfully you can often gain insight if they are walking this journey as well! Maybe they'll have some advice or a therapy that worked for them. Maybe a parenting trick has really turned out for them that you'd like to try! At Parkaire, Sheryl and Dan Pruit call them "Our Kids". That's what I mean. It gives a sense of solidarity and also shared responsibility. Takes away that feeling of isolation and gives hope. Hope is my favorite. Hope keeps up going when there is nothing but a tiny bit of raveling string at the end of our rope. So I'm going to lay it out for you, and we will move forward from there.
My love of a son has Tourrette's Syndrome. In his case, and in MANY cases, this doesn't come alone. He also carries quietly (to most everybody else) the labels of OCD, Anxiety disorder, Mood disorder, ADHD and Sensory Processing Disorder. To be honest, I feel like I'm forgetting one at this point, but this gives you the general idea. Y'all I have to brush this kid!! 5 times a day. I have thought through space in my house where maybe just maybe there will be enough room to hang a swing. His weighted blanket is coming for Christmas... in soothing colors (not his favorite color which is red)! Not wild sides with any of his other favorite things like sharks, video game characters... nothing that will trigger an obsession.
You can see that I'm at the beginning of the sensory journey! Ha! I promise I flop like a fish between being all in on those therapies and thinking that it's total quackery and that I'm being taken for ALOT of money!! In reality, I'm supposed to sensory brush my child 5 times a day right now... deep touch basically like a massage, in order to trigger sensory recognition input in his body. This may not come as a HUGE shock to those that know him and have spent time with him, but he may not be fully aware of where his space actually ends and begins lol!!! You know those fantastic kids that I really can't get enough of, but have almost no personal space. They are all over you and their friends, sometimes intentionally and some times by sheer accident?! Always. He's Always been like that. And he has friends like that too! Those are the real joys. Locking into those kids who don't care about that personal space either!!
This is the time for pause. Close your eyes and take a slow nose breath. Stop at the top and hold it. 1...2...3... now slowly release if through your nose as well. If you need another. Pause and do another couple! You are not alone. We are in this too. And we walk it too! It is hard. The hardest thing I've ever done! But we are here. We have breath in our lungs and that means that our purpose on this earth is ongoing! So, even though, Mama... Dad... I KNOW you are tired. Believe me I KNOW. Press in and Press on. Make space for rejuvenation. It's OK. If you homeschool it's doubly hard. But you can. And I know you will. It's what we do. We DIG to find it at least half the time, but WE FIGHT!! So don't give up. Be encouraged.
Our Bible lesson this week in school is from Luke. Stating that What seems impossible with men is POSSIBLE with God! I don't know about you, but I need to be reminded of this often!! If Abraham and Sarah can have that promised son after years and years of questioning that promise of God! But at almost 100 years of age, they have him...finally. If they can be given those gifts and at that ancient of age?! Then we can y'all. We CAN raise these babies to be self governing, fully functioning adults! And let's make this distinction. THAT. LIVE. ON. THEIR. OWN! Ha! But seriously. This is a HUGE goal Right?!!
I leave you with a blessing of Peace. May it always find you. In the quiet moments, and especially the loud, stormy ones. May you seek it often and let it wash over you and fill in your gaps. John 14:27 says, " 27 Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid!" Take courage in that!
My love of a son has Tourrette's Syndrome. In his case, and in MANY cases, this doesn't come alone. He also carries quietly (to most everybody else) the labels of OCD, Anxiety disorder, Mood disorder, ADHD and Sensory Processing Disorder. To be honest, I feel like I'm forgetting one at this point, but this gives you the general idea. Y'all I have to brush this kid!! 5 times a day. I have thought through space in my house where maybe just maybe there will be enough room to hang a swing. His weighted blanket is coming for Christmas... in soothing colors (not his favorite color which is red)! Not wild sides with any of his other favorite things like sharks, video game characters... nothing that will trigger an obsession.
You can see that I'm at the beginning of the sensory journey! Ha! I promise I flop like a fish between being all in on those therapies and thinking that it's total quackery and that I'm being taken for ALOT of money!! In reality, I'm supposed to sensory brush my child 5 times a day right now... deep touch basically like a massage, in order to trigger sensory recognition input in his body. This may not come as a HUGE shock to those that know him and have spent time with him, but he may not be fully aware of where his space actually ends and begins lol!!! You know those fantastic kids that I really can't get enough of, but have almost no personal space. They are all over you and their friends, sometimes intentionally and some times by sheer accident?! Always. He's Always been like that. And he has friends like that too! Those are the real joys. Locking into those kids who don't care about that personal space either!!
This is the time for pause. Close your eyes and take a slow nose breath. Stop at the top and hold it. 1...2...3... now slowly release if through your nose as well. If you need another. Pause and do another couple! You are not alone. We are in this too. And we walk it too! It is hard. The hardest thing I've ever done! But we are here. We have breath in our lungs and that means that our purpose on this earth is ongoing! So, even though, Mama... Dad... I KNOW you are tired. Believe me I KNOW. Press in and Press on. Make space for rejuvenation. It's OK. If you homeschool it's doubly hard. But you can. And I know you will. It's what we do. We DIG to find it at least half the time, but WE FIGHT!! So don't give up. Be encouraged.
Our Bible lesson this week in school is from Luke. Stating that What seems impossible with men is POSSIBLE with God! I don't know about you, but I need to be reminded of this often!! If Abraham and Sarah can have that promised son after years and years of questioning that promise of God! But at almost 100 years of age, they have him...finally. If they can be given those gifts and at that ancient of age?! Then we can y'all. We CAN raise these babies to be self governing, fully functioning adults! And let's make this distinction. THAT. LIVE. ON. THEIR. OWN! Ha! But seriously. This is a HUGE goal Right?!!
I leave you with a blessing of Peace. May it always find you. In the quiet moments, and especially the loud, stormy ones. May you seek it often and let it wash over you and fill in your gaps. John 14:27 says, " 27 Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid!" Take courage in that!
Monday, December 12, 2016
Gini on a Journey
So all of us who still actually blog know that it is cathartic. It's the reason I started blogging nearly 10 years ago with Momma's Mercy, and it's the reason I come back to it over and over. I apologize if this is more like an online journal, but we are sorting through some very difficult things and I feel certain that we are not alone. So, I pray that you find something encouraging even in the tough posts. Something that reminds you that you, too, are not alone.
I have a son with needs. Special or otherwise, they are there and there are a lot of them. To the rest of the world he appears like the most fun, silly, smiling boy (except when he's not). Then he just seems like he might be a bit immature (which is of course true, but for reasons beyond anyone's control at this point). He has ALL kinds of labels, which I avoided forever cause I hate them, but there comes a point in a mom's life when she has tried it all and exhausted everything she knows and every piece of advice that she could find from books, friends, relatives and the like, and she goes in search of those labels after all... to bring clarity. This is my journey. My 8 year old boy is one of 4 children. He's the second born and surrounded by sisters! Bless him. But he has Tourrette's Syndrome which is the only label we have known for 4 years or so. BUT we started to see that there might be more.
My mom is the one actually. She lives a solid 8 hours from me and always wants to help, but that can be rough over so many miles, so she does things that I can't seem to find time for as a mom of 4! She researches--and she does it well! AND she prays (and sends money to help when we need it cause, y'all, special needs is expensive)! And she found Parkaire Consultants in Marietta, GA. From hence forth, I feel certain I will end up referring to it as ATL (Atlanta) cause that has been my habit in conversation up to this point! We have been working with Parkaire for 2 months I guess... time slips away a whole lot now that my brain is on overload. BUT I can simply start off by saying this, Everytime we go, I feel hope. I see work, hard work, being done by many people for my son! In fact, I feel such a peace while sitting in that waiting room, that I long to stay, as if staying would make the progress speed along faster. But that is not how these things go. Slow and Steady wins this race.
On the opposite end of the spectrum, everytime, on that long ride home, the heavy blanket creeps over me, and I grieve. I feel the weight of the tasks and the work ahead and I try not to let it tighten in my chest like a panic attack. I put on that smile and be goofy with my child, and I remember that God is even working in this. But it's a constant battle to take those thoughts and fears captive. I barely even allow my brain to go there; to wonder if I'll have the energy or the joy. There is no sense in it, cause the hole then just starts to feel deeper and darker. And the truth is, I already have been given hope AND assurance in Christ. So, I press on. Fight the fight set before me, knowing that though I stand here in body, Christ is here in Spirit, and it is He who fights with us.
I have a son with needs. Special or otherwise, they are there and there are a lot of them. To the rest of the world he appears like the most fun, silly, smiling boy (except when he's not). Then he just seems like he might be a bit immature (which is of course true, but for reasons beyond anyone's control at this point). He has ALL kinds of labels, which I avoided forever cause I hate them, but there comes a point in a mom's life when she has tried it all and exhausted everything she knows and every piece of advice that she could find from books, friends, relatives and the like, and she goes in search of those labels after all... to bring clarity. This is my journey. My 8 year old boy is one of 4 children. He's the second born and surrounded by sisters! Bless him. But he has Tourrette's Syndrome which is the only label we have known for 4 years or so. BUT we started to see that there might be more.
My mom is the one actually. She lives a solid 8 hours from me and always wants to help, but that can be rough over so many miles, so she does things that I can't seem to find time for as a mom of 4! She researches--and she does it well! AND she prays (and sends money to help when we need it cause, y'all, special needs is expensive)! And she found Parkaire Consultants in Marietta, GA. From hence forth, I feel certain I will end up referring to it as ATL (Atlanta) cause that has been my habit in conversation up to this point! We have been working with Parkaire for 2 months I guess... time slips away a whole lot now that my brain is on overload. BUT I can simply start off by saying this, Everytime we go, I feel hope. I see work, hard work, being done by many people for my son! In fact, I feel such a peace while sitting in that waiting room, that I long to stay, as if staying would make the progress speed along faster. But that is not how these things go. Slow and Steady wins this race.
On the opposite end of the spectrum, everytime, on that long ride home, the heavy blanket creeps over me, and I grieve. I feel the weight of the tasks and the work ahead and I try not to let it tighten in my chest like a panic attack. I put on that smile and be goofy with my child, and I remember that God is even working in this. But it's a constant battle to take those thoughts and fears captive. I barely even allow my brain to go there; to wonder if I'll have the energy or the joy. There is no sense in it, cause the hole then just starts to feel deeper and darker. And the truth is, I already have been given hope AND assurance in Christ. So, I press on. Fight the fight set before me, knowing that though I stand here in body, Christ is here in Spirit, and it is He who fights with us.
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