Thursday, March 31, 2011

IEP Update and OMG some real drama

We had our IEP meeting - we got everything we asked for.  Yay!


2 Fridays ago, we had some business to take care of so Marc and I took off work.  It just so happened that Dylan was off school.  Great timing.  We sent him to day care for the morning and we went and took care of our junk.  We went to pick him up at daycare.  He was outside playing.  We asked if he wanted to go to a different playground and fly his kite.  That was met with an emphatic YES! 

We were walking to the car when I hear Marc behind me say "OMG What is that smell?!"  I turned and asked him what he was talking about - I couldn't smell a thing.  He was pointing a the ground with his head twisted over his shoulder.  I touched his should and asked again.  He started to stagger and I caught a glimpse of his face which was hideously contorted.  Then, he started to shake.  As she shook, he was falling.  B'H I was able to grab him and lower him to the ground (just got a scrape on his chin and on both hands).  He laid on the ground convulsing and I'm screaming.  A woman stopped her car in the road and jumped out calling 911.  I turned Marc over.  He was blue, frothing at the mouth.  I couldn't find his pulse (may have been none or may have been I was too panicd to find it) so I started chest compressions.  People came out of the center to help.  One man (who I later discovered is a doctor) asked me who I was.  When I told him I was his wife, he told me I shouldn't have to do cpr and asked if he could take over for me.  I allowed him to and after a few more compressions was able to find his pulse.

Now, dear friends, the thing that sucks the most out of this is that Dylan was right there for the entire thing.  When Marc collapsed he walked over to him (when he was face down) and tried to look into his face.  I shoo'd him away.  I didn't want him to see his father like that.  I didn't want him to see any of it but he did. 

I called Marc's mother as soon as I knew what hospital we were (unfortunately) going to.  I called my Mom.  I checked on Dylan (who was brought back into the center) and made sure he was okay - I assured him everything would be okay and I ran to the ambulance.  Once inside Marc started to awaken.  He was out for a good 20 minutes.  According to him, one minute he's walking with his family and the next he's being attacked by a group of men who are holding him down trying to get a needle in his hand.  Scary.  He fought them the whole way to the hospital.   Once at the hospital he started to calm down.  My Mom met us at the hospital and, because Marc was stable, his Mom was there, she ran me back to the center to Dylan and to my car.  Dylan was so freaked out and rightfully so.  I thought it would be good for him to see Marc before he went with my Mom so we brought him to the hospital.  Bad idea - made things worse.  He didn't want to go near Marc.  My Mom took him to her house and he spent the night.  He asked a million questions over and over and over again and my Mom patiently gave him simple answers over and over and over again. 

He's still asking the questions....

Why did Daddy fall down?
Why did Daddy's legs shake?
Why did you take away Daddy's gum?  It's not nice to throw gum in the street Mommy.
Why did yuo push on Daddy's tummy?
Why was Daddy in the big bed?

We had questions of our own.  First they told us it was a heart attack.  Then they said that seizures can raise cardiac enzymes and that it was "just" a seizure.  The idiots, I mean hospital, said it was from his meds.  His discharge consisted of a nurse removing his IV's and telling him not to take the meds any more.  That's it, no discharge papers, no signing something nothing.  Oh, and get this - the neurologist came in on Saturday - spoke to Marc for 5 minutes, stepped out to take a call, came back in for another few minutes and got another call and never came back.  Virtua Hospital blows chunks. 

Tuesday we went to a real hospital with real doctors.  They did an EEG and came back later for the results.  We fully expected to hear it was the meds and not to take them and buh bye. WRONG.  Abnormal brain activity in the temporal lobe.  Looks like he has a seizure disorder and the Wellbutrin he takes lowered his threshold for a seizure.  Since he has been taking it (for 1.5 years) he has complained of strong smells/tastes that weren't there.  Those were little seizures confined to his temporal lobe.  The seizure 2 weeks ago spread past the temporal lobe throughout his brain causing a grand mal.  Thank Gd he wasn't driving.  Thank Gd he wasn't alone with Dylan.  Thank Gd he wasn't alone.  So now he's on anti-seizure meds but is still at risk for another one.  He can't drive for 6 months.  If he has another seizure -he won't be able to drive for a year. 

Oh, did I tell you they found Dylan's has a genetic abnormality?  Yeah, he has a deletion at 16p11.2.  Explains a LOT and has put my mind at rest in many ways.  You can read about it HERE.  I now know that the seizures weren't caused by any type of abuse or lack of care which gives me a lot of peace.  We meet w/the genetics folks at CHOP and they said we are doing all the right things and they can't predict his future.  I told them that I don't care - whatever it is - he'll be awesome :)

Wednesday, March 16, 2011

An Update and Observations

I called the caseworker at Dylan's school.  I asked her where we stood on our request to get him a one on one.  She said "well... this year isn't going to happen".  I stopped her and explained, again, that we are not unreasonable and we understand that this year is shot where that is concerned.  HOWEVER, I wanted to know if my request for a one on one will be in his IEP.  The answer was yes.  There are still some paperwork bullshit to get through but yes, it will be done.  ~insert happy dance~


1.  Since pulling Dylan off food dyes (all), he no longer has uncontrolable meltdowns.  When he does melt - it's for good reason and it's easily managed.

2.  My son is smart.  Like wicked smart.  I explained to him once about how there are certain foods (like candy and ice pops) that have "ickies" in them and that is what makes him so angry sometimes.  I have since found out that he will turn down candy because they have ickies or ask someone to check to see if something has ickies in it before he'll eat it.  He understands what those nasty dyes do to him physically and emotionally and he just doesn't like it.

3.  We paid over $10,000 in medical last year between me and Dylan (mostly Dylan).  It was worth every.single.penny.  His speech is coming along beautifully, we are parenting better, and he loves the therapeutic riding and just thinks it's fun.

4.  We are so very blessed to have Dylan as our son.  His smile lights up every room.  He's so full of love and is able to share it with those he cares for.  He's smart and incredibly funny (although I could live without his adoration of everything that is farting). 

5.  I'm getting better at filling his sensory needs with the strangest things. Last night, he was a bit overstimulated so I had him roll limes for me for juicing.  I placed my hand over his and pushed down and rolled the lime around the table.  He did it for as long as he needed and then went into the other room to play - calm as could be.

6.  I need to work on not getting upset when his need for sensory input involves getting into dirty water after being told not to go near it.  Gross!  I have to realize if I don't catch the signs, he'll do it himself. 

Oh that reminds me, his teacher told me that if he needs sensory input, he'll actually go into the corner, get the brush and start brushing himself.  How cool is that?

Tuesday, March 08, 2011

The "R" Word

March 2nd was National End The R Word day.  It calls for an end to the word retarded used as slang.  I remember growing up and slinging that word around thoughtlessly.  I cringe at those memories now.

Many twitter folks were tweeting and retweeting about ending the R-Word.  I just kinda passed those by.  I had been uncomfortable playing word police.  I don't know why.  If someone used the "n" word in my presence, I'd have an aneurysm.   Why was the "r" word any different?  Especially now that I'm raising a child with special needs. 

Yesterday a coworker was goofing around with another coworker.  They were, well, to be honest, using the speech patterns you'd typically hear from a deaf person and just laughing and laughing.  The more it went on, the angrier I got.  Don't they realize they are doing this within 20 feet of a parent of a special needs child?

I had been feeling that polital correctness has been way out of hand.  But then I realized what being PC boils down to, not policing what words people use but educating them about the words that hurt.  I need to find a calm way to talk to these people about how their words are hurting me.  However, one person involved is in charge of our IT department.  I have to tread lightly.  He has a child so I hope he'll understand.

Now, can someone please tell me where I left my balls?  The big brass ones?

Wednesday, March 02, 2011

And the diagnosis is....

No clue.  Basically, the doctor said that when a child exhibits the disorders that Dylan has, it will usually fall under a category of some sort (usually Autism).  However, not my boy.  He doesn't fit into any of their little cubbie holes.  He is most definitely not autistic.  He's way too social and makes eye contact and just doesn't have any of the markers they look for to put a child on the spectrum.  They did offer us a test where he "plays" with a psychologist for an hour or so and they determine through that if he's autistic.  I really don't see how that is going to make a difference.   He's Dylan.  Plain and simple.  He's my sweet, wonderful boy who has some challenges.   So the game plan is to do what we are doing and touch base as needed.

Before that appointment, we met with the school to go over the behaviorist's report.  Throughout the entire report, she says how much better Dylan attends to his schoolwork when he's working one-on-one with an adult. However, the final conclusion is... he needs positive feedback every 3 minutes.  I also had my panties in a twist about the fact that she starts her report with "Dylan is a 5 year old boy who lives with his adoptive parents".  Since I was not in a good frame of mind where this person was concerned, I decided to just shut up and let her talk and then address the issues at the end (in the event that she addresses them in her explanation).

While she did help to make sense of things, she didn't answer the big questions.  I wasn't the only one put off by her lack of suggestion for a one-on-one for him or the 3 minute thing.  I finally said to her "are you really going to put that in his IEP?"  She said that was her intention.  I pointed out that the IEP is a legal document which means the school and the teachers, aids, etc are all responsible for making sure that his IEP is fulfilled.  Who's going to track this?  Who's going to make sure that he's getting his "atta boys" every 3 minutes?  What happens if it happens every 4 or 6 minutes?  What about if he's having a bad day?  Are you going to expect the teacher to say "great left hook Dylan" when he's beating the shit out of a classmate?  Seriously???

The caseworker said "what everyone is saying without saying is.... he needs a one-on-one".  I told her yes and she started to tap dance.  I need to redo the rubric which previously indicated he did NOT need a one-on-one (it's a form that you circle answers, add it up and viola! you have a magical answer), then I have to talk to my supervisor and then, if he qualifies, we have to hire and train... I stopped her.

I told her that I don't expect new services like that for him this school year.  I understand that it's not as simple as pulling someone out of a pool of aids and saying - here's your kid.   What I do expect is that they will do whatever they need to do to ensure Dylan has a one-on-one for first grade.  That when I return to discuss his IEP, my expectations are that he will continue with the current path of services (speech 3x a week/OT 3x a week) and that he will have a one-on-one.  I will not accept anything less so do whatever you have to do to make it happen.

This is a new caseworker.  She doesn't know me.  I told her to talk to our former caseworker from Dylan's preschool (she knows her).  She'll explain who we are.  We aren't the parents who sit by and expect the school district to do everything for our child.  We do our part.  We just want them to do theirs.  He needs an aid who can manage his sensory needs, keep him engaged and on the right path so that he can learn.  This child is smart.  I'm afraid that if we don't do things the right way, he'll lose his love of learning.  That's not acceptable to me.  Not at all.

***EDITED TO ADD (thanks Liana!)

I did speak with her about the adoption thing.  I asked her first what the relevance was in case I was missing something.  She just kinda looked at me and said, what do you mean?  I told her that he lives with his mother and father - how he came to be my son is not at all relevant to the case at hand.  I told her that adoption is an event, not an ongoing thing.  I asked her if she puts in other kids' reports that Jane Doe lives with her biological parents.  She said of course not (everyone rolled their eyes at this point) and I told her to take it out.  My son doesn't need yet another label.  I have no problem with his adoption being discussed in his medical records, it's relevant.  Unless she feels that his behavior issues were the cause of his behavior, she needs to take that out.  She apologized and agreed.