Mixed Day

Honeybunches had a mixed day at school.  "He had an okay morning.  This afternoon he refused to work quite a bit.  1:1 aide asked him to get his lunch box and he refused.  He then threw markers.  It all went down hill from there.  1:1 aide had to hold him."  Then Dh said 1:1 aide had to walk him off the bus and was sitting next to him because he refused to stay seated.  At home this afternoon he's been fine without any issues though.  He went out with his therapeutic mentor to the library and did not have any issues there either.  IDK what caused his day to be like it was at school. 

Today

I am very happy that today has been a better day at school and home. 

Back on the roller coaster!

Things around here have been like riding a roller coaster that we have not been on in a while.  Yesterday Honeybunches book stated:

"He did not have a good day.  He seemed off from the get go.  During reading, he wanted to read a book about cats.  After some coercion, he joined the reading group.  Then he gave (PT) a hard time.  He basically shut down and refused to work.  Then during writing he did not want to do word of the day.  He put his head down and refused to write.  1:1 aide took him for a walk.  When he came back he was fine."

Yesterday afternoon remained tough at home.  He was mad when he came home because I told him I did not think it was a good idea for him to go out with his Therapeutic Mentor when she came based on his behavior at school. (Plus he gave her a really hard time last time she took him out and with his day progressing like it was I did not think it was a good idea.)  He began crying hysterically about that.  He became very angry, refused to listen to me and Daddy's words.  He even got aggressive with Dh and I which has not happened in a long while.  Then when his Mentor came, he wanted nothing to do with her. He stayed in his bed crying for a while and then just laid there.  He seemed depressed for most of the day.  Later in the evening he complained of a headache.

Today Honeybunches had another rough morning at school.  He refused to work in Speech.  He put his head down and accidently ripped his paper as well.  "He seems out of sorts the past couple of days" is what his teacher wrote in his communication book today.  When I picked him up early for his pdoc appointment, his 1:1 aide handed me a letter Honeybunches wrote to me.  It said:

"Why I was crying is Mom I was crying at school because I was sad because I didn't want to go to (Pdoc's center).  Mom I didn't want to work today at school.  I was ripping (Speech Therapist's) paper.  I hat to pick up my pensil because I threw it.  I was kicking (1:1 aide).  That is what I did't at school."

That is what he wrote, in his writing.  hat = had.  Did't = did.  Pensil = Pencil.

The afternoon continued to be a rough one.  He was sad, crying, hyper, sad, crying, hyper, hyper and crying... The roller coaster ride has begun with him and I want off!!!  At least he was not aggressive today.  The afternoon was filled with mood swings, perfume being sprayed, not listening to my words, refusing his bath, me having to call "Daddy" and have him do it.  His pdoc left all his meds the same for now.  Thankfully she gave us a lab slip to get his blood drawn.  Besides the typical Liver Enzymes, "LFTs, Lipids, Glucose, and Lithium" she is also testing him for heavy metals: "Lead, Mercury and Cadmium".  She gave us a script for 150 mg Lithiums in case his levels come out low.  I really like his pdoc.  In the beginning I was unsure if I'd trust her with Honeybunches because he is so complex.  For now, we are happy with her.

His counselor asked me if I ever thought about homeopothy with him.  I have put some thought into it, but at this time we honesty can not afford it.  Living on a very low income with just Honeybunches and my DH's SSI it is not something we can really achieve right now.  It sure would be awesome if one day insurance would pay for alternative medicines and therapies.  Shoot, they can not really cost more than some of his meds do!    I will research what things work for headaches though.  Honeybunches gets them frequently and the docs at the teaching hospital last week told me not to give him Tylenol.  Because of his Lithium, he can not have Motrin or Advil.  I hope I can find something safe to give him.  Pdoc told me to try Bengay on the back of his neck.  That's worth a try, after I research if it interferes with Lithium...

I am hoping that this rollercoaster ride ends soon because I want it to stop!  I want off the ride and soon! 

Hard

I get so sick of people asking me and commenting about how...

• "It must be so hard...."
• "You've had it rough..."
• "Oh I am so sorry you've gone through all this with him..."

And all that mess!  Yesterday the doctors, residents and students in Boston said how it must be so hard and how I've been dealt a rough hand with Honeybunches.  I said "Well some might see it that way" and "I don't think so because he was given to me for a reason".  They just looked at me puzzled.  That is how I feel.  I am not sorry I am his Momma.  I am not sad this is the hand I was dealt.  I don't look at it as being hard to be his Momma, caregiver, advocate and whatever other roles I play.  I look to him as a blessing.  I believe that there is a reason I was chosen to be his Momma.  In fact, that brought to my mind a couple articles I really love: And Then God Created This Mother and Some Mothers are Chosen By God.

I really do think that God takes extra time in finding parents/caregivers for the children who need a little "Extra" in life and for the "Special" ones.  I think that everything happens for a reason and that I am his Momma for a reason.  Sometimes I think it's a blessing, but I must admit when he was struggling... just like the quote from Mother Theresa says "I know that God will not give me anything I can not handle.  I just wish he did not trust me so much!"

Possibilities!

Yesterday Honeybunches had his long awaited appointment at the major teaching hospital.  It took us 1 hour 10 minutes to get to the train station.  That's usually only a 40 minute ride.  It was snowing heavily in our area.  We got there just as the train was boarding.  Thankfully, my outspoken Honeybunches said "Can you wait" to the train attendant standing outside.   Thankfully we made it to Boston and back safe.  When we got out there it was raining heavy and very very windy.  So windy, in fact I felt like it was blowing my 200 lb body away lol.  Takes a lot to blow me around!

On the way to Boston, Honeybunches was getting very upset.  We accidently were in the "Quiet car" and had to find some place else to sit because he was not being "Quiet".  He wanted lunch at 8:00.  I gave him the choice of 3 other snacks.  He fussed for about 20-30 minutes about that.  "Mommy.  Mom. I am hungry. Mommy.  Mom."  I stayed consistent with the choices he could have.  This husky man with grey hair who had to be into his 60s kept staring at us.  Unsure of what to think of him, I sent him a smile as E was fussing.  He smiled back so I guess he was not too frustrated lol. He sure did stare a lot. Finally Honeybunches gave up and chose Strawberries and Apples with Peanut Butter.

We arrived in Boston with some time to spare.  That was great because neither Honeybunches or I like rushing.  They had me fill out a few questionnaires and some other paperwork.  His appointment was scheduled at 10.  It was about 10:40 before we got into the large conference room.  The receptionist told me that they wanted to discuss his case before calling us in.  At least she communicated well and didn't just leave us waiting wondering.  When Honeybunches and I got called in, upon entering the large sunlit conference room, I was a bit overwhelmed.  I counted 14 doctors, students and residents sitting around the brown rectangular wooden table.  I was expecting around 5, not 14! They went around and introduced themselves.  It went too fast for me to write every one's names and positions down.  DH waited in the waiting area.  All those people would have been too much for him.  He seemed very impatient yesterday even just waiting for us to be called in.  Honeybunches did great for us in there.  I was wondering if he would struggle without Daddy, but he was fine.  He really liked the 20 something male Pediatrics resident who was sitting at the end of the table not far from us.  He kept giving Honeybunches math problems to do and had him color.  I focused on his side of the room, to my left, because it was easier for me then getting overwhelmed by looking around at all those people.  On his side of the room, was also the head Child Psychiatrist and another doc, whom I think worked in Psychology maybe that was at the head of the table.  That's where my attention was focused. It was less intimidating that way and they were the ones asking all the questions.

They went over his developmental history, all his previous testing, lab history, medication history, diagnostic history, symptoms history, health history, got my family history, and asked a million questions.  The first 2 1/2 hours was all questions directed towards me and Honeybunches.  Then the last half hour they came up with a bunch of possibilities...

They may possibly want to do a SPECT scan.  The doc at the head of the table, mentioned that.  He said that there were clinical trials being done but they stopped because they had a hard time getting the children to remain still for 10 minutes.  He asked me if Honeybunches would.  I honestly said "We would not know until if we tried it".  He said that a certain part of the brain shows up differently with children who have BP.  If it's on one side it's BP and if it is on the other it's Schizo-affective.  They said to do this he'd have to have radioactive dye and it only takes 10 minutes but he would need to remain still.  That was one possibility. 

They said there are two types of Autism, one is genetic and the other is ASD features.  They said it's possible that some of his issues may be environmental.  They asked if there were any "Environmental concerns" in my town.  I told them it's a factory town.  The biggest one is the brake factory which leaves the town smelling like burning rubber.  There are other factories here too. They asked if others in the area have children with BP, Autism or delays.  IDK.  I wonder how I can find out more about that? They are going to have environmental medicine look into that.  Then they asked about our water supply.  Public water pipes, but our house was built in 1901 and the original pipes are still here.  They said for me to use a water filter that goes right on the sink, because all water needs to be filtered even for cooking. They said the water pitcher is not good enough.  They question if he may have heavy metal poisoning.  They may possibly test him for heavy metals. 

The Neurologist resident looked over his 1st EEG that was done at Tufts.  She said it was slightly abnormal.  That was something to me!  As far as everyone told me before they said it came out fine.  She told me that a certain percentage of the population can come out abnormal.  She asked if he had an MRI before.  Nope.  Then they talked more about the SPECT scan possibly happening instead or first.  They questioned Fragile X.  Neurologist said children with that don't typically present like he does.  It's never been tested even when he had his genetics testing done because back then (2/2009) the Geneticist stated on her eval  "Because of his normal speech and overall development with no mental retardation we do not suspect Fragile X to be a cause of his symptoms".  

They questioned the possibility of his liver issues being related to genetics, weight related or environmental too.  They questioned it more because his liver enzymes were lower when he was on the higher dose of Abilify.  They said if it was the Abilify they should have possibly been higher.  They told me no tylenol for his headaches at least until I hear from them.  That leaves us with nothing for them.  If they get bad I guess we will be calling the doc.  

They mentioned everything from his birthmark, to some "Roles on his neck" to his ear lobes being fatty as possibly meaning something too.

I feel like we made leaps and bounds today in areas that nobody has ever researched with Honeybunches before.  Oh yeah, they said to leave him on his current meds for now.  One of them brought up the possibility of Geodon, but the others decided that it does not work as well as Abilify "In children who present like him" and can cause the same liver issues.  So we got losts of "Possible"s today that I believe will lead to something good for my son.  It was great teaching the students and they had some great ideas, as did the residents and docs.  They did not come up with a specific plan as of yet.  They want more time to discuss and go over his case because he is so "Complex".  They said after they do that they will write me a letter with their findings and recommendations.

I will be anxiously awaiting hearing back from them.  In knowing this hospital from our previous experiences there, it might take several weeks.  Their reports are usually very thorough and informative though.  This all sounds so promising!

Honeybunches appointment lasted the whole 3 hours it was expected to.  We did not get out until a couple minutes after one.  There was a commuter rail train scheduled to leave at 1:15.  If it was just Honeybunches and I, I would have prefered to hang around the hospital, go get some lunch there as I know it was Vegan friendly, let him watch the ambulances, and just stay there wasting time until the next one came at 4:40.  Nope, DH thought we should rush our way to the subway and to the train station trying to catch that train!  We almost made it.  It was pouring so heavy that we got drenched in just a couple minutes.  The wind was trying to take off with our umbrellas just from the maybe 50 feet from the subway exit to the train station enterence.  We were rushing, running against the rain.  We ran our way into the crowded train station.  The clocks said 1:17.  The train was gone already!!! We were stuck there until 4:40 when the next one came.  Honeybunches was happy to see the trains pull up through the 9 glass doors. DH was pissed off because we missed the train.  He did a good job remaining calm, but I could tell by his body language he was beyond frustrated! Before we even left the house, the night before, I had told him that he should have stayed home.  I knew it would be a long day and too many people for him. He mentioned that he should have.

After a while, I began walking around the station with Honeybunches because I got tired of sitting down.  We walked in circles lol.  Then we began examining possibilities for dinner.  There was nothing Vegan friendly I could find, so when the rain slowed Honeybunches and I went for a walk outside.  We walked up and down 4 city blocks.  All I found was about 6 pizza places lol.  Not what I was looking for as I was hoping for Spanish or Chinese so we could get some rice.  Oh well.  After about a half hour we arrived back at the train station.  I got Honeybunches some fries and fruit snacks. (2nd one in a day.  Bad Momma but I could not find anything else without cholesterol for him around there.) I was frustrated because I knew we would have been better off staying around the hospital.  It's a more Vegan friendly area.  The cafe there has Vegan/Vegetarian options and there is actually a Vegan restaurant right up the street.  But no.... Dh was insisted we'd make the train that we missed.  Rrrrr.  Anyways, Honeybunches did fine for the rest of the afternoon and evening.  Thankfully I remembered to bring his noontime med and evening meds.... just in case we missed the 1st train.

GI doc appointment + diet update

Yesterday Honeybunches went for an appointment with his GI doc and the nutritionist that works with that doc. We seen the nutritionist 1st.  She said that he can begin to have lean chicken or turkey white meat once a day, plus 1 egg and 2 egg whites once per week scrambled or in an omelet. She also told me to offer him more vegetarian "Protein".  For example after school for a snack. She told me that increasing his protein should make him less hungry.  He has literally been wanting to eat every hour he is awake.  So that news made him happy.   He'll be on a low cholesterol diet now, but not necessarily Vegetarian anymore.  I'll still buy his Vegetarian "Meat" alternatives, keep him on soy/almond milk, but can give him the other stuff the nutritionist mentioned.   He does not need to go back to see them until 6 months from now.  That's great news because the hospital where they are is 1 hour 15 minutes away and not accessible by public transportation.  Our van is not too healthy right now.  On the way to his appointment in the city traffic somebody beeped their horn.  He says "Ah Shut Up"!  I giggled.  Then he said "See I learned that from Dad"!  ROFL.  It was not funny but hillarious at the same time.  That gave me my laughs for today.  Well that and the circle doors at the hospital exit. You know the ones that move as you go through them.  Well this one had attitude problems lol.  Either DH or him touched it.  Well the thing stopped in the middle of us going through it.  Then it said "Please back up.  Do not touch the door" in a rude voice and said some other words I can't remember, but that is the 1st time I seen a door with attitude problems lol.  Only in Massachusetts!

I went grocery shopping this morning.  I found him some of these chicken tenders from Purdue's Simply Smart new line of chicken products for dinner tonight. Purdue Simply Smart Chicken Tenders.  Well technically they are not chicken tenders.  They call them "Lightly breaded chicken strips".  LOL Same thing IMO.  Honeybunches loved those. They seemed like the healthiest chicken I could find.  I was literally standing there comparing all the labels for about a half hour.  I only gave him 3 small ones, but he was happy with that.  He ate them all.  We shall see how his belly likes it. It's been about 45 minutes and he seems okay so far. For lunch a few days during the week I found him some light turkey breast.  I was standing there comparing those labels too and got the one with the least cholesterol. If I give him those for lunch, for dinner that night he'll have a "Veggie protein".  I like how the nutritionist came up with that instead of "Fake meat" like we were calling them lol.  I told E we will let him eat this stuff for a few weeks.  Then I am going to ask his pdoc for a lab slip to check his cholesterol and other levels.  I told Honeybunches if it goes up too high then he will have to go on "My diet" again.  (Doctor did not say that... I did.) I am staying on my strict Vegan diet. I just have no desire to eat meat, milk, eggs or any other animal product for ethical reasons plus I think it's healthier.  It can get interesting being the only Vegan in a meat eating household.  I get sickened when I have to fix hamburg for DH and the girls.  That just smells worse than anything to me.  So this week I bought extra Lite Life Smart Ground and some Boca Burger Crumbles to use in place of it.  The Smart Ground pass Dh and the girls' approval.  This is the 1st time I seen Boca Crumbles in our local grocery store so figured we'd give them a try.  I also bought him some Galaxy Veggie Shreds to put on some home made pizza I plan to make one day this week.  They are not Vegan, but are healthier than real cheese which I still chose not to give him. 

Forgotten Aggression

Honeybunches had a bit of a rough time tonight for the 1st time in a while.  I mean it's been many months since we've had incidents like this.  He had a bloody nose that lasted about 20 minutes.  It was bleeding so heavy I was seriously thinking about taking him to the ER.  Then it stopped.  He said it was probably bleeding because he picked it on the bus on the way home from school.  Lovely LOL.  Within about a minute he:

• Threw sugar on the floor.
• Hit princess
• Pulled her hair
• Hit her with my key chain
• Threw a can of cooking spray at her head

He is so quick.  When I came he said "Guess I need to go in time out" and went without a problem.  He did all this probably because he locked the door to his and my rooms.  Princess tried to take the keys from him to open it.  He got angry because of that we are thinking.  This is the 1st time he's been that aggressive in a long while.  Princess was crying.  Although she is older than him, he used to get the best of her.  She's so good with him and never aggressive back.  It used to break my heart... as it did this evening.  :(


FORGOTTEN AGGRESSION: (Another original poem by me that I just wrote..)

Terror inside your body
Used to fill us with fright
I hope that the days don't return
The ways I seen tonight

The only difference is that you were in control
Which never happened in the past
Either way, I hope it goes
And is not here to last

Hating the heartache and pain
Of watching you lose what you've gained
Skills we worked so hard to teach
Sometimes seem like they've been washed down the drain

Other day's you're here with us
Smiling, laughing and such a delight
All within one day
You can move so fast from the biggest hugs so tight

To causing me to hope these days are not here to stay
My little man you've come too far
To turn back to the old ways
Things were different then they used to be

Much quicker the aggression came and went away
Hopefully tomorrow's a brighter day
Still on days like this I get scared
My heart hurts like a razor blade shattering it deep inside

My eyes are sad but refuse to cry
For then I would be accepting this is how things are going to be
When at least now your body is free
From the rage inside and the thoughts that used to make you want to die

Today was not a rage
IDK if that is better or worse
You were in control it seemed to me
Not under the command of the man in your belly that used to be

Still watching you struggle
Is never an easy task
Praying and hoping the good times
Will come back to last

Hating to see my Princess be filled with sorrow
I shall go to sleep soon
For there is always the hope
Of a brighter tomorrow

I think things today were more of his Autism then his BP.  It's hard to know sometimes with all his alphabet soup going on.  He was in control.  One good sign is that he realized that what he did was wrong because he knew he needed to go in time out.  That's a big accomplishment for him.  He has a very hard time understanding how his actions affect others and often doesn't understand what he did was wrong.  Today he understood at least that it was wrong.  He does not seem to get the connection about how his sister felt yet though which is something we continue working on.  In his brain.... he loves locking the door.  He must have gotten very upset when she took the keys from him.  I guess he may need more 1:1 attention at home.  Since he's been doing so well, I admit I am guilty of not being right on him as much as I should be.  :( </3