Friday, January 31, 2014

The Raw Truth of Why We Can't Meet Today...

Happy Friday to you all.

I've decided to start sharing some of our "lives" to show you the raw truth of what autism looks like from day to day in our home.

I'm not ashamed, but I am scared to read comments because I think people are so judgmental sometimes.  Please be kind, the days have been challenging.

This is an email I wanted to share.  It is a response to our representative in an agency that reports to the county where we live.  I must allow for a monthly monitoring in our home so that my son can continue to receive services (his two part time staff in our home).

I have changed the name of the staff person and the agency so that I am not sued in any way shape or form.  The agency has already called Child and Youth Services on me from when my son had what I thought was a tic in his ear.  That will be another "raw truth" post for some future date.

ok.... here goes....

Hi Yvonne,

I rec'd your email on Tuesday 1/28 about having a monthly monitoring meeting on Wed (1/29).

I could not reply Tuesday 1/28 or Wednesday 1/29  b/c I was not able to sit long enough to think an email through that would even remotely make sense with Danny's minute by minute needs and challenges.

I rec'd another email on Wednesday 1/29 about having a monitoring on Friday (1/31)  at 11:00.

I then phoned on Wednesday 1/29 and left a message that I couldn't do Friday (1/31) because Danny has been extremely challenging lately but we could maybe shoot for Monday (2/3) at 11:00 (hopefully he would be more manageable) (in the hopes that Sunday I let him have the entire day without trying to do any sort of scheduled activities with him.  Sunday is a full day where we do not try to engage him in any sort of purposeful activity. It is a day where we try to "stim" along with him.  He does shut everyone out but perhaps one day he won't.  He seems to understand in his own way the it is "his" day of (fully supervised at arms length) Danny directed time.   

I rec'd your phone message today 1/30 about tomorrow being the last day of the month (1/31) and you have to do a monitoring because Monday is in February.

I phoned and left another message today (1/30) that perhaps your (Yvonne's) supervisor A or your (Yvonne's) supervisor B could approve a later monitoring due to our specific situation.

I then thought I should send an email explaining in more detail of what has been going on (ad nauseum)...

To start off, let me say that a monthly monitoring is the furthest thing from my mind when Danny is this manic.

I have had to cancel all my doctors appointments/ meetings/ errands/ outings/ etc. and haven't left this house for well over a month unless it was with Danny for a short period of time [i.e. ride to help him calm down [e.g. 1am - 6am)] so that Bill could try to get some sleep as he works on a roof and it is imperative that he does not fall off a roof due to lack of judgement from being so tired [lack of sleep].  Looking back (via hindsight) this regressive type manic behavior that Danny presents started in October/November).  Bill has had to stay home from work for at least 15 workdays (in January alone) to try and help manage.  (In case you are wondering how he can work on a roof with all the snow, he tarps the entire roof at the close of each work day so that he can sweep the tarp, remove it and continue to perform the job.  He also has had some small interior jobs to do on the extreme weather days.)  Also important to note here, his work is seasonal and our winters are financially hard to begin with (as well as hard on him physically) We still have the same bills to pay even though it is winter.  He doesn't get as much done in the cold/snow as the days are shorter, the work is slower (it is approx. 20 degrees colder on a roof [and vice versa 20 degrees hotter in the summer] and the wind chill is ten times worse).  He has to work every day possible including Saturdays and Sundays and hasn't been able to because of the challenges that Danny presents.  Needless to say we are behind with the mortgage, utilities (phone, electric and cable), and our food has been a luxury of sorts...

We haven't had a heater ALL WINTER LONG.  Our heater broke last winter from when the worker came to clean/service the heater for the yearly contract with the heating/oil company.  We were told by at least 5 plumbers/heating companies that our heater was beyond repair and we needed a new one.  The estimates rolled in with the lowest price of $15,000.00  There was and is no way we could afford a new heater.  The fact that we have had no heat for that long has taken a toll on all of us.  I am able to say (with tears strolling down my face) that Bill rebuilt the heater during the wee hours of the night when Danny was able to sleep and finally, our heater (which isn't that old) turned on and has stayed on since 1/20/14.  He has no training in HVAC, but was able to work step by step through to rebuild and "fix" our broken heater.  We have had heat for 10 days now. However, the heater was not the cause nor even part of the challenges that Danny is having.

Why I need to have a meeting on Monday (in February) in lieu of Friday (in January)... He gets extremely agitated with people in the house (even when his own twin brother {Billy} stops by the house prior to catching a train back to Temple). When staff come for their shift, it takes him about 1-3 hours to get used to another person in the house (transition) and he has a day to day trusted relationship with them.  It also takes him 1-3 hours when staff leave the house (transition).  Until this mania lessens, I do not and cannot let people come to or visit our house (other than his two staff) because I cannot agitate him any further when his baseline presents with fear, anxiety and agitation. It isn't worth the added stress in the house that these visits bring  (increased lack of sleep to what he already lacks, more pacing and hyperactive stimulative actions which hurts his fragile health already.  His health declines because it brings on headaches that are even worse than he already has, migraines that last longer and seem to be more intense in pain, increased reflux, bowel issues, stomach problems, tremors, etc etc etc.) Although he does know you, it is a monthly visit and there isn't a trusted relationship like there is for daily staff.  

Danny would not only be agitated for the actual monitoring meeting (in home visit), he will be agitated long after you leave (perhaps running into several days).  If you did come for a monthly monitoring tomorrow, you would only see him for a few minutes (because that is all you have to see and is all that he would be able to take) and then I would have to have his staff try and take him on a long drive to nowhere for the remaining time that you are here.  After you left,  I would have to then call staff to bring him back home and it is sad to see how extreme he becomes and who even knows how rough or for how long... When Danny has increased agitation, he physically tremors (tongue, lips, fingers and hands, legs, feet, etc.), he may have mini seizures, and his headaches get  worse. His pacing won't stop and if he is able to sit, he will rock.  If his agitation/fear/anxiety increases from baseline, his headaches/migraines get so severe that nothing I do can help.  With increased anxiety and/or fear he gets sick to his stomach and will continue to throw up until he sometimes dehydrates.  He has no off switch, there is no regulation in his body.  His acid reflux always gets worse when he is presented with things that "agitate or scare him".  I've seen this behavior from his own twin brother visiting the house (which I have had to stop his visits temporarily as well).  Yes, you read it correctly, his own twin brother!?! How sad... how very sad.  I choke up at the thought and typing this is making me cry so hard that I need to take a break.  If I have had to stop visits from my other son, it is my hope that someone from your agency would understand that a monitoring is not what is in his best interest on Friday (in January) vs Monday (in February).  

It is also my hope that with this email, I will provide you with all the information that I normally give you at every monitoring:

He presents with:

-increased fear with people and also places.  He is not able to go anywhere or even get out of the car.  Favorite things are no longer even close to acceptable for Danny (e.g. walking around in the mall, going to arts and crafts stores, going to bead shows, picking out beads, beading, going to Happy Tymes to play basketball, going for a walk in the park, going to McDonalds, getting out of the car.... nothing; 

-lack of long term sleep (anything over 1-2 simultaneous hours); he is unable to shut his body down enough to sleep (even with his medication cocktail [geodon/remeron/valium] that has been successful enough for the past 5+ years); he jumps up from a sound sleep at a hint of a noise or activity in the room or perhaps noises in his own mind;  This leads me to believe he is not able to get into a deep enough sleep (Delta/Rem stages 3, 4 and 5);

-increased need for drinking ice water (24/7 continually); not only does he want ice water 24/7, he will drink (if permitted) until he pukes and then start over again; he now drinks the air when he is at the bottom of the cup and will not stop until you physically remove the cup or straw from his mouth (which is rather hard b/c he is so strong); it seems to be a physical need combined with a stimulatory activity that is brain based (watching a specifically chosen part of a you-tube video which changes from time to time, sometimes drink to drink); this has been a huge issue for the past few weeks; I have tried to do an functional behavior assessment and continue to take ridiculous amounts and types of data which has resulted in nothing that is remotely helpful for him; 

-seemingly healthy for Danny (rule out "virus, cold, flu" and many other things); important to note here that he just finished his 2nd course of steroids [prednisone] which totaled a hefty 300 mg for this latest dose; 

-extremely hyperactive, pacing and not physically able to sit nor lay down to relax, hence unable to shut down for longer periods of sleep [see above]; when he feels pain his "normal" is the opposite of what I do (for example, if I get a headache, I modify my environment by turning the lights out, turning off the tv/ radio/ computer; I try to rub my temples; take tylenol or motrin and lie down to try and relax); When Danny is getting a headache or has a headache - he paces non stop, he turns up his ipad and watches parts of video's non stop while he paces, he drinks water, he used to ask for a bath prior to this latest episode, if I can get him to lie down, he will jump up like a spring and continue to pace until the pain must get so extreme he will start to then sometimes scream or until I physically shut him down with medication to force his body to relax or he would pass out or bite his hand (which I have had to learn through past experience)  

-inability to concentrate for any sort of directed activity; he went from tracing a few sentences several times a day to tracing 3 to 5 letters a day which is approx. 98% decrease in this activity alone; he used to enjoy: coloring with markers, colored pencils and/or crayons; sorting activities (independently), playing simple turn taking games such as "matching" and "what do you see" games; he cannot do paper/pencil tasks - nothing {I purchased so many new types of activities for the past few months thinking he was bored but he seemed to just shut down over the course of several weeks};  His days were full of modified activities where I would lesson plan to teach him: self care, safety, communication (both receptive and expressive), social skills that are acceptable in the home and in the community, etc.  At present, Danny is able to do specific activities that are only completed with full physical and verbal prompting (he sadly lost all independent maintenanced skills);  the specific activities on the best of days total no more than 15 minutes;  This is a decrease of over 99%;  

-inability to be in the same room with cups, glasses and/or water bottles (filled or not); he has some sort of fear/anxiety and will  "hide" until the cups/glasses and/or water bottles are removed from the room and locked away; if not removed in a timely fashion, his fear/anxiety will keep building;

-inability to be in the same room with someone who is eating or food on a plate ready to be eaten; once again he has a fear/anxiety and will hide until the food/plates are removed from the room and locked away; same as above, the food/plates need to removed in a timely fashion because the fear/anxiety keeps increasing; 

-fear/anxiety that is so high we have had to limit the amount of stimuli that he is able to handle which has resulted in us living in one room of our house *the family room".  Every other room is locked with a door that has an entry/exit doorknob that is locked at all times (needing keys to open).  We also sleep in the family room as you have seen in the past monitorings and must hide to eat and drink in the "locked" kitchen and take turns when staff is here.  I no longer have my last comfort to carry and sip my iced tea throughout the day; All closet doors also have exit/entry door knobs with keys and must be locked at all times; 

-inability to have free access to the toilet b/c he continues to pee or try to poop until he is bleeding from his rectum; we must lock the bathroom door; once again, it is important to note that he has lost "regulation" skills as he did have prior to his grand mal seizure; 

-inability to have free access to toilet paper b/c once he sees it, he must unravel it to the cardboard core, then throw it in the toilet and continue to flush until there is a grand flood; if he sees toilet paper, he will ask over and over again until it is finally is presented (a cardboard core) to show him that it is "empty"; his brain will not shut off (he would ask for a week if permitted); this is so sad and he is not being a "brat" or "acting out of a behavior"... his brain works in such a way where he cannot push stop - he can't continue on until this need is met... It becomes something that turns on in his brain and grows and grows until he is able to understand by seeing the card board core that it is indeed empty and all gone or able to "use" it all by unraveling and flushing; It is very difficult to put this into words as his brain works like this for a lot of other things as well;

-inability to have access to water (see above);

-inability to have access to the garage because he runs outside in his underwear, naked or whatever to "try and go for a ride";


-not like himself - or who he used to be not only prior to grand mal seizure but maybe back in September? He isn't the Danny that I know... 

Things have gotton more challenging (to say the least).  When I read his ISP it doesn't represent "Danny".  It shows him years ago (perhaps prior to his early tweens.)  Some of the changes that I requested (additions and deletions) weren't made - the ones that say nice fluffy things are still in there and that isn't what life has been like for the most part.  Most likely an oversight but it is far from what life has been like for and with Danny.

The bathroom has been renovated "Danny style".  All toilet paper is under lock and key in a different room. See above for toilet paper description. The flusher has had to be "physically" removed and we have to flush the toilet by lifting the porcelain lid on the back of the toilet to then pull a string that my husband rigged to the inner "flusher part" which is hooked to the inner chain.  When Danny leaves the bathroom, only then can you manually flush it.  He was continually flushing (see above) and burned out the well pump relay.  We've had to replace this and must wait till spring to have the well pump checked as we now do not get water on demand.  When the water is running, it stops for periods of time.  This includes the sink, bath, shower,etc.  Both upstairs and downstairs bathroom doors have new entry/exit doorknobs with a key.  He is always trying to fit "keys" into the knobs all around the house to gain access for certain things - thereby needing a few replacement doorknobs here and there... 

The entire house has been renovated to be "Danny style".  We live in one room in a 12 room house (including the basement and garage as two separate rooms).  I will explain further rooms in later emails when I have additional time to think the verbage through.

When I look at the "regression", it has been since his grand mal seizure.  A huge process that has taken us a long time to not only see, but understand.  As I have learned to understand each and every change (mostly out of necessity), many things need to be changed to ensure his safety while Bill and I try to continue to live within the house, eat and sleep as best as possible. 

I am unsure what is going on:

- if it is a manic episode,

-if he has severe depression, or some form of brain based psychological issues other than autism, mental retardation (intellectual 

- if he is having side effects from prednisone,

- if he needs another mri of his brain (his headaches are every day occurrences) - r/o any brain tumor,

- if he is getting sick again (ear infection, strept, pneumonia, or worse),

- if he is having seizures (some of the cause is most likely here b/c we have witnessed some earlier in the month),

- could these be changes to a different permanence (for the worse) or temporarily regression ?

- could he need a change in meds (perhaps the SSRI isn't working or not strong enough)?

- could this be something seasonal?

- or something I haven't thought of .... (the above are my best educative guesses from 24/7 monitoring and observation.

IF Danny isn't as manic, we can try Monday at 11am.

However, the remaining information is as follows:

- no change in meds except for the course of Prednisone which is now complete.
The Prednisone script was written and given as follows:
each pill was10 mgs... dosage was 4 pills for 3 days (40 mg for 3 days); 3 pills for 3 days (30 mg for 3 days); 2 pills for 3 days (20 mgs for 3 days) and 1 pill for 3 days (10 mg for 3 days) which totaled 300 mg for the entire course of Prednisone.

All other meds remained the same for the month of January.

Dr. N. phone in Prednisone after the visit we had in December.  In December, he wrote a 2nd course of antibiotic and said that if he didn't feel any better to let the office know and he would phone in a course of steroids for him.

Canceled allergist twice and was asked to reschedule on a Wednesday when he is able.

Canceled psychiatrist twice and rescheduled for the month of February.

It is extremely challenging when he is like this... I had to cancel five of his doctors appointments this past month.  I am not able to take him to the doctor b/c that would put even more undue stress on him and I couldn't imagine how he would react due of his fear to any doctor and their offices.  He has had so many surgeries, procedures, tests, pokes and prods which have resulted in an extreme fear / non-preference to the medical community and anything that has to do with it. 

I am trying hear you that it is the end of the month and the monitoring should be (must be?) by the 31st so that it happens in January, but Danny's mind or body doesn't regulate whether it is at the end of the month or not.... He does not regulate am or pm let alone  a monthly visit from an agency representing the county for his ISP.    We need every bit of sanity we have to effectively manage him in this household without any added stressors right now.

If he is still this rough on Monday - I will email you around 3-5am ish to reschedule.


From: Yvonne at the agency
Sent: Wednesday, January 29, 2014 2:44:40 PM
Subject: FW: Hello are you free Friday at 11:00?

Hello Sue,

It’s me again!


From: Yvonne at the agency
Sent: Tuesday, January 28, 2014 12:22 PM
Subject: Hello are you free Friday at 11:00?

Hi Sue,

I hope that all is well. Are you free on Friday at 11:00 for a monitoring? Also, if you could have the progress notes and the immunizations, that would be awesome.

If you are not free on Friday, I will work around your schedule as much as possible!

I look forward to hearing from you.

Thank you,
Yvonne at the agency

 Ok... That was it.  I felt the need to share what autism is like with a young adult (Danny is 20 years old).  I read many "cute" things about little ones and I have to somehow show the real truth of what life can be like.  

Autism is not pretty.  I hate what it took away from my son.  
However in that same breath,  I love my son like nothing else 
and will do anything for him to help him be as happy and safe 
as possible.  I will never give up. I fight for him because he 
cannot fight for himself.  I try and keep his dignity in tact and it 
is hard when the system(s) don't really seem to care.  
Even though they say it in words, it isn't truly heartfelt.  

If the systems did care, my son would be allowed the time 
he needs to get through his difficult period perhaps even 
offering him something additional with regards to services.  
Also, we would be allowed our time as a family to get through 
this without any additional stress.

Have a great day and a super weekend.
Sue xoxox