I made this for all those who care for us but do not understand what we go through everyday, who live or are out of touch and want to know how we are doing. I truly hope this will allow you to see us in a new and positive light.
Thursday, October 7, 2010
I know it's been forever but...
Life has most definitely taken its toll on me and I can't even begin to relay what the last month has thrown at me. I promise to post an update on everything once I've recovered from it all and more doesn't keep replacing what's already been dealt with. So, in having to be forced to assess my 'previous' life, before RSD and all the psych stuff really kicked in, I felt very nostalgic. Especially with my *gulp* 10 year high school reunion coming up in the spring. So, I thought I would share a bit of my life...back in 1997-1998. It's amazing and depressing how someone can go from all that...to barely walking and being in constant, excruciating pain everyday.
Winston Churchill Band 1998 - "20th Century Reflections" HQ
1997 Marching Band <------It won't let me post the video but there's the link!
Wednesday, September 15, 2010
I know it's been awhile but...
So much has been going on, it's incredible!!
First off, Ally (our new in-home Behavioral Therapist) is also a Speech Therapist, so we'll get double on that...and he absolutely LOVES her. I'm hoping this means he will work well with and for her. We're hoping to get started actually working with her Monday morning *all previous visits have been to foster a relationship that will help all along the way*. Goals/treatment plan is still in the works, but both Ally and Lupe *the Head Behavioral therapist in town* are confident that we can come up with not only a line of effective discipline, but also alleviate Braeden's anxiety by using charts to show not only what will happen each day, but also what will be required of him each day, and consequences *both good and bad* for behaviors, and come up with an effective sensory 'diet' to keep him from going into fits from over/understimulation, to protect both of us from the actions made in those fits.
Also, last Thursday in OT, we tried a little experiment and did a combined therapy session 3 therapists to 2 kids. So Braeden was paired with another 5 yr old, Jaden*just two months older than he, but far more physiologically developed *towers over Braeden*, yet far less verbal*. Everyone was a bit nervous at first as either boy is prone to fits and difficulties with other children in close quarters. But to all our surprise and IMMENSE joy, it went amazingly perfect. They even played, with the same toy *after doing their therapy time* in the very small quarters of a backyard tree-house/fort set up in the therapy room. All weekend long, everything coming out of Braeden's mouth was all about 'My new friend Jaden' this and that. And how he can't wait to play with his new friend again and have him come over to play and so many other things. Coming from a child who has never had, nor attempted, to foster a peer age relationship... WAS AMAZING!!!!! So much so, that both the Director *one of the therapists in the group that day* and I want to continue combining their therapies, once a week, as Jaden also needs the interaction and companionship of another boy his age.
The therapy center is also giving music therapy/lessons and Braeden is ECSTATIC!!!! I've been looking for music therapy for years, as it's always worked at home to help calm him down/make him focus in home-school.
Also, they have a home-school set-up, which I'll get more info on Saturday *Open House*, and after speaking with the director, we both feel Braeden would benefit from attending a couple of days a month. I know that sounds weird, but curriculum-wise, we're right where we need to be, and they're following a particular curriculum at each child's pace. They also have access to open therapy and Chiropractic/Cranial-Sacral therapy throughout the day. But they have days that are 'free' days, like art, music, crafts, etc, and these are the days we feel Braeden would benefit from attending. She is going to speak with the teacher about doing this. Some 'free' days involve field-trips, that both the Director and I don't feel he's ready for, but his 'new friend Jaden' will most likely start going full time, so even more time spent together. ALL GOOD THINGS!!!!!
As for me, I'm still awaiting a decision regarding my disability case. I was so nervous/excited when I got a letter from them, today. I thought either it's an approval or rejection letter, the latter of which would mean having to file an appeal and hire a lawyer, which I MOST EMPHATICALLY do NOT want to do. But to my disappointment/relief/seething anger, it was a letter requesting the very same extra information they 'required' to make a decision on my case...of which was SENT TO THEM TWO WEEKS AGO!!!! So, now I'm worried, did they even get it...are they screwing with me? Because many cases do get denied the first time around, and have to appeal with a lawyer...then almost all that appeal with a lawyer will be approved. Without a lawyer, you don't really stand a chance *sob* So, I'm sincerely hoping they do not deny me because I don't have the physical/mental/emotional strength to take that on along with everything else I've got to handle.
First off, Ally (our new in-home Behavioral Therapist) is also a Speech Therapist, so we'll get double on that...and he absolutely LOVES her. I'm hoping this means he will work well with and for her. We're hoping to get started actually working with her Monday morning *all previous visits have been to foster a relationship that will help all along the way*. Goals/treatment plan is still in the works, but both Ally and Lupe *the Head Behavioral therapist in town* are confident that we can come up with not only a line of effective discipline, but also alleviate Braeden's anxiety by using charts to show not only what will happen each day, but also what will be required of him each day, and consequences *both good and bad* for behaviors, and come up with an effective sensory 'diet' to keep him from going into fits from over/understimulation, to protect both of us from the actions made in those fits.
Also, last Thursday in OT, we tried a little experiment and did a combined therapy session 3 therapists to 2 kids. So Braeden was paired with another 5 yr old, Jaden*just two months older than he, but far more physiologically developed *towers over Braeden*, yet far less verbal*. Everyone was a bit nervous at first as either boy is prone to fits and difficulties with other children in close quarters. But to all our surprise and IMMENSE joy, it went amazingly perfect. They even played, with the same toy *after doing their therapy time* in the very small quarters of a backyard tree-house/fort set up in the therapy room. All weekend long, everything coming out of Braeden's mouth was all about 'My new friend Jaden' this and that. And how he can't wait to play with his new friend again and have him come over to play and so many other things. Coming from a child who has never had, nor attempted, to foster a peer age relationship... WAS AMAZING!!!!! So much so, that both the Director *one of the therapists in the group that day* and I want to continue combining their therapies, once a week, as Jaden also needs the interaction and companionship of another boy his age.
The therapy center is also giving music therapy/lessons and Braeden is ECSTATIC!!!! I've been looking for music therapy for years, as it's always worked at home to help calm him down/make him focus in home-school.
Also, they have a home-school set-up, which I'll get more info on Saturday *Open House*, and after speaking with the director, we both feel Braeden would benefit from attending a couple of days a month. I know that sounds weird, but curriculum-wise, we're right where we need to be, and they're following a particular curriculum at each child's pace. They also have access to open therapy and Chiropractic/Cranial-Sacral therapy throughout the day. But they have days that are 'free' days, like art, music, crafts, etc, and these are the days we feel Braeden would benefit from attending. She is going to speak with the teacher about doing this. Some 'free' days involve field-trips, that both the Director and I don't feel he's ready for, but his 'new friend Jaden' will most likely start going full time, so even more time spent together. ALL GOOD THINGS!!!!!
Amazingly, well maybe perhaps not so come to think about it, we are FINALLY making SIGNIFICANT progress towards Potty Training since changing his diet. Which is TOTALLY worth the extra precautions/effort/cost of sticking to this Corn*and all its derivatives including Dextrose, Maltodextrin, as well as the obvious corn meal/flour/starch/etc*/Tomato/Dairy - except 'Natural Cheeses'/Eggs *both whites and yolks* free diet. He is starting to FINALLY recognize the feelings and is both going when asked to, but also spontaneously *INCREDIBLE!!!!!!* I'm completely convinced that all this time, over 3 years of Potty Training, it all comes down to discovering he has severe food intolerances that were damaging his intestines is why we never had any success previously. I won't go into specifics, cause that gets kinda nasty, but still...HUGE strides to being completely potty trained!!!!!!!!
Thursday, September 2, 2010
So...what does he have again???
It seems as though every 'professional' interprets the same information differently.
I've been trying for years to get Braeden the help and treatment he needs, but have been corralled into stereotypes and never been able to break free of them. Now...after seeing my psych team 'officially', they've concluded that yes indeed he DOES have ADHD *and anyone who's ever met the child would agree to that*...of which he will be treated from a most noninvasive approach available, and still retain his delightful personality buried beneath layers upon layers of hypersensitivity to stimuli...and after a behavioral profile, they have moved him out of the Autism Spectrum *which I never really felt he fit* and into the low intensity level of childhood bipolarity.
Now, this sounds bad...but really it opens the previously unobtainable doors that will vastly improve Braeden's quality of life. It does include a medicinal treatment plan...but one I'm comfortable with *as opposed to the previous psych who wanted him on schizophrenic anti-psychotics WITHOUT behavioral supports*.
"Autism" only 'requires' ABA Therapy as it's 'miracle' treatment...and ABA is more like training a dog/monkey to perform tricks. There are useful components of it, which we will be employing with Ally, his newly appointed IN HOME Behavioral Therapist!!! And the rest will be provided via counseling and other behavioral techniques more tailored to his specific situation.
Being that so much is going on with him, my psych team is moving forward not only VERY slowly, but even more carefully than usual. They're quite optimistic that with the interventions I've fought for years to get will give Braeden a new life, really.
Sometimes, he's so trapped up in his own world/fit/etc...and we're hoping to be able to finally give him the ability to not only self regulate so he doesn't reach levels of maladaptive behaviors, but to recognize the symptoms and learn to first come down off the track that leads to meltdowns and know what can trigger these symptoms so that we can, eventually, have good days 75%-90% of the time...instead of the maybe 30% we have now.
I know nothing is a miracle cure, but I'm seeing a future for him that I didn't before. With the right encouragements and techniques, he could be able to function mentally to the extent that no one even suspects that he is considered within the bipolar spectrum. Now...if we could only control his seizures...
I've been trying for years to get Braeden the help and treatment he needs, but have been corralled into stereotypes and never been able to break free of them. Now...after seeing my psych team 'officially', they've concluded that yes indeed he DOES have ADHD *and anyone who's ever met the child would agree to that*...of which he will be treated from a most noninvasive approach available, and still retain his delightful personality buried beneath layers upon layers of hypersensitivity to stimuli...and after a behavioral profile, they have moved him out of the Autism Spectrum *which I never really felt he fit* and into the low intensity level of childhood bipolarity.
Now, this sounds bad...but really it opens the previously unobtainable doors that will vastly improve Braeden's quality of life. It does include a medicinal treatment plan...but one I'm comfortable with *as opposed to the previous psych who wanted him on schizophrenic anti-psychotics WITHOUT behavioral supports*.
"Autism" only 'requires' ABA Therapy as it's 'miracle' treatment...and ABA is more like training a dog/monkey to perform tricks. There are useful components of it, which we will be employing with Ally, his newly appointed IN HOME Behavioral Therapist!!! And the rest will be provided via counseling and other behavioral techniques more tailored to his specific situation.
Being that so much is going on with him, my psych team is moving forward not only VERY slowly, but even more carefully than usual. They're quite optimistic that with the interventions I've fought for years to get will give Braeden a new life, really.
Sometimes, he's so trapped up in his own world/fit/etc...and we're hoping to be able to finally give him the ability to not only self regulate so he doesn't reach levels of maladaptive behaviors, but to recognize the symptoms and learn to first come down off the track that leads to meltdowns and know what can trigger these symptoms so that we can, eventually, have good days 75%-90% of the time...instead of the maybe 30% we have now.
I know nothing is a miracle cure, but I'm seeing a future for him that I didn't before. With the right encouragements and techniques, he could be able to function mentally to the extent that no one even suspects that he is considered within the bipolar spectrum. Now...if we could only control his seizures...
Sunday, August 29, 2010
Things a special needs parent would tell you not to take for granted
Things a special needs parent would tell you not to take for granted
When you become a special needs parent you realize what most people consider an annoyance is really a blessing.
*You are lucky because you never use words like autism, spectrum, bipolar, sensory, anti-psychotic, manic or nonverbal in relation to your children and may not even know what they mean. I am all too familiar with them and wish I wasn't.
*You are lucky because your kids have friends, even if they could pick them better. Mine don't have any and that breaks my heart.
*You are lucky your kids wear clothes even though you can't stand their tastes. Mine can't stand the feel of clothes on their skin.
*You are lucky you have to take your kids to practice even if you have to drive all over your state shuttling them around. I will likely never have that opportunity.
*You are lucky you can't get your kids to eat their vegetables. I can't get mine to stop eating things that aren't food.
*You are lucky your kids have a boyfriend or girlfriend even if you think they are wrong for each other. Mine likely won't ever have the experience.
*You are lucky your kids break curfew or sneak out to a party. Mine won't even be invited.
*You are lucky to go places on the holidays even if you'd rather stay home or can't stand your family. My kids can't handle the holidays let alone the get together.
*You are lucky to have extended family and even friends.
Most of ours have long since left because our life was too complicated.
*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
Hmmm. Yes I still can be very irritated at parents who seemed to take everything for granted. But now I think I have things they don't.
*Every new thing Braeden does is a miracle. I see miracles every year when you think small.
*Braeden will never forget I love him and I will never take him for granted.
*Braeden will have people in his life who understand him and who support him and love him unconditionally and never judge him.
*Everyone who meets and works with Braeden will be touched by him forever.
*Braeden can change the way we view ourselves and our lives and inspire us to do more.
*Braeden loves unconditionally.
*When Braeden gives you attention, you've earned it.
When you become a special needs parent you realize what most people consider an annoyance is really a blessing.
*You are lucky because you never use words like autism, spectrum, bipolar, sensory, anti-psychotic, manic or nonverbal in relation to your children and may not even know what they mean. I am all too familiar with them and wish I wasn't.
*You are lucky because your kids have friends, even if they could pick them better. Mine don't have any and that breaks my heart.
*You are lucky your kids wear clothes even though you can't stand their tastes. Mine can't stand the feel of clothes on their skin.
*You are lucky you have to take your kids to practice even if you have to drive all over your state shuttling them around. I will likely never have that opportunity.
*You are lucky you can't get your kids to eat their vegetables. I can't get mine to stop eating things that aren't food.
*You are lucky your kids have a boyfriend or girlfriend even if you think they are wrong for each other. Mine likely won't ever have the experience.
*You are lucky your kids break curfew or sneak out to a party. Mine won't even be invited.
*You are lucky to go places on the holidays even if you'd rather stay home or can't stand your family. My kids can't handle the holidays let alone the get together.
*You are lucky to have extended family and even friends.
Most of ours have long since left because our life was too complicated.
*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
Hmmm. Yes I still can be very irritated at parents who seemed to take everything for granted. But now I think I have things they don't.
*Every new thing Braeden does is a miracle. I see miracles every year when you think small.
*Braeden will never forget I love him and I will never take him for granted.
*Braeden will have people in his life who understand him and who support him and love him unconditionally and never judge him.
*Everyone who meets and works with Braeden will be touched by him forever.
*Braeden can change the way we view ourselves and our lives and inspire us to do more.
*Braeden loves unconditionally.
*When Braeden gives you attention, you've earned it.
Tuesday, August 24, 2010
Week In HELL!!!
So...we are on day 2 of our week long video EEG...and things are NOT going well.
Just my freaking luck...years of seizures, night terrors/seizures, you name it and after 24hrs of monitoring and all they've gotten is discharges in his sleep (frontal lobe mind you...which is where he has his seizures) If they would have him be ACTIVE instead of laying in bed all day and night...I dunno...I'm just frustrated <SCREAM!!!!!!!!>
I mean the child's seizures are either due to overheating from heat exposure or activity...*which wouldn't happen laying in a hospital bed*, from sensory overstimulation...*again wouldn't happen laying in a bed*...and the night ones...which don't happen every night anyways, most but not every.
I'm not surprised in the least that they found discharges from his frontal lobe...in fact, I've known that for over 2 1/2 years. I was told that they would be performing tests to try to trigger or induce seizure activity...which HASN'T happened one bit.
After giving an extensive history of the nature of his seizure activity...and their only finding discharges in his sleep...makes me feel as though they don't believe the history given...because 'if we don't see it...it doesn't exist' which is a bunch of CRAP!!!!!!
Also, they concluded that he couldn't have Lennox Gastaut epilepsy syndrome which would explain both his all his different types of seizures, developmental issues, Autistic like behaviors, and Behavioral problems. That means that in addition to the medication the Neurologist chooses to try to control his seizures, I will have to put him on a mood stabilizer like Abilify or something in that family because his behaviors are out of control and can be violent at times.
This also means I can not 'blame' his seizures for his behavioral problems. We will be getting a whopping 2 1/2 hrs a MONTH of Behavioral therapy and I'm switching him to my psych team for both medicinal and psychological help, counseling/Behavioral Play therapy.
It just figures that we get stuck in such a situation where his normal activity is rarely seen and when they try to document it...all they get is some discharges. And that we can most likely rule in the diagnosis of Childhood Bipolar in the near future if we can't get his moods stable and his 'rages' under control. God, why can't we ever get the 'easy' ticket?
Lennox explains everything he has going on...and while it doesn't respond to traditional seizure medications, it has it's own medication that helps with the seizures and behaviors. But no...not for us <SCREAM> Now he'll get a minor seizure disorder disorder diagnosis and a long line of psychiatric disorders that I was hoping he would never have lingering over his head.
Lennox would have kept him out of the pedi psych ward...now if something else happens...It scares the shit out of me what could happen. With a diagnosis of Childhood Bipolar...well...little needs to be said there.
Well I'll try to update if anything changes and he actually starts acting like he does EVERYWHERE else and they actually see something. If not...you'll know I'm wasting away in my own worries.
All of this has given me a migraine and I just wanna go home and cry.
I mean the child's seizures are either due to overheating from heat exposure or activity...*which wouldn't happen laying in a hospital bed*, from sensory overstimulation...*again wouldn't happen laying in a bed*...and the night ones...which don't happen every night anyways, most but not every.
After giving an extensive history of the nature of his seizure activity...and their only finding discharges in his sleep...makes me feel as though they don't believe the history given...because 'if we don't see it...it doesn't exist' which is a bunch of CRAP!!!!!!
This also means I can not 'blame' his seizures for his behavioral problems. We will be getting a whopping 2 1/2 hrs a MONTH of Behavioral therapy and I'm switching him to my psych team for both medicinal and psychological help, counseling/Behavioral Play therapy.
Lennox explains everything he has going on...and while it doesn't respond to traditional seizure medications, it has it's own medication that helps with the seizures and behaviors. But no...not for us <SCREAM> Now he'll get a minor seizure disorder disorder diagnosis and a long line of psychiatric disorders that I was hoping he would never have lingering over his head.
Well I'll try to update if anything changes and he actually starts acting like he does EVERYWHERE else and they actually see something. If not...you'll know I'm wasting away in my own worries.
Friday, August 20, 2010
Occupational Therapy With Robbie
Swing - Pitched fit over having to work with beads and needed time out with deep pressure hold. But once music got going, he participated with full attention and no problem at all. Trying to connect beads...needed hand over hand assistance as he couldn't do it alone. Got to free-swing and cooperated quite well! Played 'Doctor' on the swing, big hippo as patient. Didn't do interactive play...stemmed more with toys instead.
Ball - Didn't enjoy ball squishes while laying prone *like last time*...but laying supine did well *like last time* Needed some redirection and choice between participating or time out again.
Scooter obsticle course - went around facility 3x with Robbie's supervision...with minimal redirections
Taco swing - had difficulties getting and staying laying prone, started to pitch fit over laying prone in swing...picked up magnets with wands, alternated hands and then did them with large horseshoe.
Ball Pit - hid finger puppets and monkey flashlight in the balls...for him to try to find...but he has to dig his hands into balls to find...wanted lights off and Andre in ball pit with him and Robbie. Did really well. Used monkey flashlight to both light up the balls and look for finger puppets.
Bean Pit - did quick arm brushing before and did rather well...dug all the way down to the bottom...and looked for all the animals with both hands and using tools.
Got to go back to his favorite swing for reward for doing alright.
**Told me to look into the Ketogenic Diet - a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control (refractory) epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures.**
Speech Therapy with Erin
Started working with categories *where he had difficulties*, but he is getting about 50-75% right. Started pitching minifit over card about furniture and needed moderate cues and redirections.
Another minifit over his own animal cards, doing them and the amount. Did not participate well, throwing/screaming/hitting/completely attempting to avoid.
Did shopping cart - speaking k ending words - Snake, Zach, Sock, Coat Rack, Truck, Book, Notebook, Steak, Lipstick "Sticky".
Did really well with minimal prompts...Until I had to leave the room...then all chaos ensued. Escaping, stealing, running around, taunting the therapist...So...I guess I will be in the room for every session as he needs more than one person in the room with authority.
Swing - Pitched fit over having to work with beads and needed time out with deep pressure hold. But once music got going, he participated with full attention and no problem at all. Trying to connect beads...needed hand over hand assistance as he couldn't do it alone. Got to free-swing and cooperated quite well! Played 'Doctor' on the swing, big hippo as patient. Didn't do interactive play...stemmed more with toys instead.
Ball - Didn't enjoy ball squishes while laying prone *like last time*...but laying supine did well *like last time* Needed some redirection and choice between participating or time out again.
Scooter obsticle course - went around facility 3x with Robbie's supervision...with minimal redirections
Taco swing - had difficulties getting and staying laying prone, started to pitch fit over laying prone in swing...picked up magnets with wands, alternated hands and then did them with large horseshoe.
Ball Pit - hid finger puppets and monkey flashlight in the balls...for him to try to find...but he has to dig his hands into balls to find...wanted lights off and Andre in ball pit with him and Robbie. Did really well. Used monkey flashlight to both light up the balls and look for finger puppets.
Bean Pit - did quick arm brushing before and did rather well...dug all the way down to the bottom...and looked for all the animals with both hands and using tools.
Got to go back to his favorite swing for reward for doing alright.
**Told me to look into the Ketogenic Diet - a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control (refractory) epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures.**
Speech Therapy with Erin
Started working with categories *where he had difficulties*, but he is getting about 50-75% right. Started pitching minifit over card about furniture and needed moderate cues and redirections.
Another minifit over his own animal cards, doing them and the amount. Did not participate well, throwing/screaming/hitting/completely attempting to avoid.
Did shopping cart - speaking k ending words - Snake, Zach, Sock, Coat Rack, Truck, Book, Notebook, Steak, Lipstick "Sticky".
Did really well with minimal prompts...Until I had to leave the room...then all chaos ensued. Escaping, stealing, running around, taunting the therapist...So...I guess I will be in the room for every session as he needs more than one person in the room with authority.
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