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.

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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.

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.

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.

Updates as of 8/20/2010

Well...it turns out that I also have a duplication at 6q25.3, just like Braeden does.  Now that could mean either that the duplication is simply affecting us differently, or that the chromosomal abnormality is not a causal factor for anything that either one of us has and that it is simply our specific 'family' of chromosomes. 


So, the best way to know is to have my mom tested as well...but it would be at her own expense...and, per Baylor Med would run around $500-700.  If in fact she does have the same abnormality, then we would need to branch out further into the family to see if certain traits are similar and those looking to/already have children in our family should get tested...just to be safe.


If not, then it could either be a spontaneous duplication in me...that Braeden inherited *sob*...or that the duplication runs in my biological father's family...of which we'll never know.  I know, there's a lot of if this or if that...but since we really can't get much more information until more tests are done...we're in limbo.  



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On to more positive topics:
My Psychology center that treats me moved Braeden's evaluation to Sept 2., instead of the 13th!!!!!  So, we should get a more accurate and thorough insight into what is going on with Braeden and his behavior issues.  Also, since the waitlist for the DARS grant for intensive behavioral therapy is so long, I found another grant/program that gets assistance for young children with special needs at risk of being hospitalized.  


It's called the YES program and it's piloting here in Bexar County.  The purpose of the program is to do whatever it takes to keep the child in their home, instead of having to be put into the psych ward or a facility for treatment.  So, we have our face-to-face interview in a few weeks to see his exact needs, and from there what they can offer in the form of supports (therapies, counseling,  etc).  This would help me come up with and provide a 'safety plan' to keep him out of the pedi psych ward.  



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Next week we will have our 5 day in-patient video EEG *ooo, yay fun!!8)*.  They plan to try to induce seizure activity, in addition to our own attempts to increase them, to get as many of every kind as possible.  The funny thing is some of the techniques they'll be doing are things he already does *like sleep deprivation*, or things that don't set off a seizure *like flashing lights*...and they won't be doing things that will give him a seizure *like having him spin/get dizzy; or get overheated...*  


So, I'm hoping they catch a lot of what they're looking for.  We're doing this to decide what treatment plan we should choose.  If a certain brain wave spike appears at any time during the EEG, then it confirms that he has Lennox-Gastaut Syndrome * a difficult-to-treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types; it is often accompanied by mental retardation, psychological and behavioral problems.. *, wherein we would choose the medication made specifically for LGS called Banzel and it treats both the seizures and behavioral problems *he would still need behavioral and cognitive therapy to supplement*.  


If that certain spike does not show up, then he has multiple types of seizures that don't respond to treatments, but we're going to try Zonagran, which is a new medication to treat multiple types of seizures.  But it does nothing for behaviors.  Now, I'm not one to medicate, and we're currently doing herbal treatments for anxiety and detoxing from heavy metals found in his system *along with Asbestos...so someone's in trouble!!!!!*, but if his behaviors continue as they are or worsen, then I will be putting him on a mood stabilizer.  Because I have a mild form of Bipolar, which I got from my biological father's side, he is at significant risk of developing a form of Bipolar...and yes it can manifest in children as young as Braeden.  And the earlier we begin treatment and the intensity in which we pursue it, the better chance at a functional adult life *meaning not needing to be in a facility/group home/etc*. 



So...yeah...it's gonna be a long...Long...LONG week...and I'm bringing enough baggage to rival Paris Hilton, as I have to pack not only clothes for both of us, diapers and wipes for him, things to both entertain and educate him *yes we are still going to be doing lessons!*...but enough food for the week for him as he can not have anything served from the hospital cafe except fruit.  I've been pining for a vacation...but I think someone got the wrong address...as a week in the hospital was NOT on my list of desirable vacay destinations!!!!!!

Treating chronic pain with spinal cord stimulator implants, by Dr Reza G...

This is the procedure my pain management specialist and I are considering to help with my nerve pain from RSD. Now this would only be available to help with the pain in my right leg...not my arm as it's not safe to implant the device in the neck. It would only help decrease the pain, but not reverse or stop the spread of the contortion of my ankle/foot. And I would still be attempting to treat the nerve pain in my right arm with low-level pain meds (I can't take higher level meds because I have to be at least remotely functional to be able to care for Braeden). And nothing in modern medicine can reverse or stop the contortion in either limb, we're just trying to lessen the degree of severity of the pain.  (part 1)

Treating chronic pain with spinal cord stimulator implants, by Dr Reza G...

(part 2)

Treating chronic pain with spinal cord stimulator implants, by Dr Reza G...

(part 3)

Massage Demonstration Cranial Sacral Therapy

We're going to be start doing to be starting Cranial Sacral Therapy for Braeden once or twice a week...it's not a therapy that's well known, which is why I posted this to inform you!!!

Therapy 8/12/2010

We finally had a good therapy day!!!!!  We got the scores from his Receptive Language exam, and he was off the chart for his age (Tell me something I don't already know!!!).  There were some areas we need to address both in Speech Therapy and in home school:  categories (picking what didn't belong, relations of objects), difficulties with pronouns/word endings/sentence structure, answering questions within topic, repeating sentences.  K/G errors, multi-sylabic words, fronting, and flipping sounds.  But overall, he did amazingly well!!  We'll have the results from his Expressive Language exam after our next Speech apt, but she already told me that his score there was much lower (Again, something I totally expected).   

   

Occupational Therapy -  Worked with Stacia in jungle room for a while:  jumped on trampoline - asked before!!!!, went looking for specific toys to use from the main ot room!, and played on the swing with toys - asking sometimes. Got tired/frustrated with toys on swing and threw them all over the floor.  Pitched mini fit (about 1 1/2 minutes long) when asked to pick up, but after a few minutes complied and picked up.  Is having difficulties asking before doing things (impulse control)  Took helmet off to play in tunnel, but put back on to play on the swing again.  Started to play with bristle blocks, tolerated quite well. But didn't want to 'build-squish' them together - pitched larger minifit (5 minutes long).  

 

Went into larger room and did ball squishing 20 times on both sides, took off helmet as he was getting agitated with it on.  Doesn't like doing ball squishing while laying prone (on tummy).  Brushing - warned Stacia about level of severity of tactile issues on arm.  Tolerated brushing on legs pretty well - did some joint compressions and he found that to be ticklish.  Did alright with brushing on right arm, but was a little difficult with left arm as he was concerned with his elbow injury.  Enjoyed joint compressions on both arms.  Mini fit to return to the prone position and only made it to 'child yoga pose' instead of fully on his tummy.  Maybe there's something to look into in regards to him laying on his tummy.  I've never seen him sleep on his tummy either...I dunno?Didn't like brushing on his back, but liked joint compression on back.    

 Did glow drawing and liked it...Will need to look into getting him one of the glow drawing boards that go up on the wall either in room or in Sensory Corner *more about that later*!!!

 Played in beans...liked them poured onto him...but not to put his hands in/dig through...would only use bowls to move beans.

We're going to stop the herbal treatments to rid his intestines of the parasites, and beginning both an herbal Cellular Defense *to remove heavy metals and toxins from his body, help balance pH levels in his body, and promote a healthy immune system* and herbal Anxiety Control (in place of adhd meds) *AC24 Provides amino acids, herbs, minerals, and essential cofactors to support the brain's Inhibitory Neurotransmitter System*  And we might need to go back onto a limited amount of corn in his diet, as the detox from that is really messing his head up.  Currently, due to newly found food intolerances:  Corn and all corn by-products *High Fructose Corn Syrup, Corn Starch, Corn Meal, Corn Flour, Dextrose, and Maltodextrin*, Tomatoes, Pork, Eggs *both yolks and whites* his entire diet has changed, well somewhat.  I'm still making the same foods, just in a different way, paying WAY too much for loaves of bread, and making things from scratch *which isn't too easy with Captain Taz in residence*  They also found intolerances to milk and dairy products, but we already knew those and have avoided them.   So, we'll see if any of these new herbal treatments will help at all, because these don't have side effects, whereas the meds the doctors want him on are really scary.  I don't want to dope him up on 20+pills a day, I just want him to feel like himself and not terrorize those around him so much.