Mama Drama

OK, be forewarned, this post is about me, mama.  And my drama of the last 24 hours.  I have been having migraines for about a year now- can't imagine why.  But seriously, this one started yesterday, really before we even did our little play session for Nate.  It wasn't too bad, but it was there- I have been having serious back pain anyway, it's where I carry all of my stress.  The women in my family have a history of migraines, my mom, my sisters.  My grandmother and her brother both had brain tumors also.  Which is a little scary.  I have Imitrex, which I try not to take.  I am very drug naive and it knocks me out, literally.  I waited until after work to take it, about 5 last night, then again at 7.  I finally passed out at about 10pm...still in pain, but exhausted.

I woke up at about 2:30am in the most excruciating pain I have ever felt.  To put it in perspective, I did not have an epidural when I had Nate, and this was worse, by far.  I spent about an hour in the bathroom getting sick and then woke John up because I was getting scared.  He tried to rub my back, but I couldn't tolerate it, couldn't tolerate any touch at all.  I think I scared the crap out of him when I started mentioning the ER.  He has seen me have many of these headaches, and I am pretty tough about it, I get through them, usually even work through them if I need to.  We tried to get a hold of someone to watch the kids but we were unsuccessful.  He asked me if I could wait until we could, and I said honestly, no.  It was just that bad.  I was terrified that I was having an aneurysm.  Poor John.  He kept trying to make things up to reassure me, like saying that brain aneurysms are painless.  So false, but so sweet.  I told him to call an ambulance.

I have been a nurse for almost 13 years.  I have never been in an ambulance.  The last time I was in the ER for myself I was coughing up blood.  I do not take these things lightly.  That's how scared I was.  I got sick the entire way there, even after IM zofran.  The EMT put an IV in me, although I could tell immediately that it was not in my vein....it was actually distracting me from the pain of my headache because it was painful too.  I was taken to Baltimore Washington Medical Center, had never been there before.  I still have no idea what it looks like in there, lol.  Anyway, it took forever to get anything ordered for pain, but when the nurse finally came in to administer it, she said, hmmm, this IV isn't flushing.  I told her I was positive it wasn't in the vein and she agreed, put another one in.  After she was done, she said sorry, and I told her she would never get a complaint from me, I am a nurse too.  A nice nurse NEVER tells her nurse that she is a nurse until after any procedures have been completed.  When I was an L and D nurse, I had to put an IV in an OB with preeclampsia (for those that don't know, this means she was very very puffy and veins are very difficult to locate) while her anesthesiologist husband watched.  That day I vowed to myself that I would never reveal my credentials in a context where it might make someone nervous.  They took me for a head CT, which was negative.  I am really relieved to have had that.  Sometimes it's hard to believe that you can have this much pain and have nothing serious going on in your brain.  I felt bad because by the time they took me for the scan they had given me drugs, and apparently my head kept lolling to the side.  Told you I was drug naive. 

So I have spent the whole of today completely drugged.  Both grandmoms ended up coming to the house, and then John could come get me.  He left me in the Starbucks attached to our grocery store to go get my script and I was out cold when he came back to get me.  Slept till 5pm and am about to go to sleep again.

Shout out to John- thanks for taking such good care of me and the kids.  He was supposed to go away for the weekend this morning, and changed his plans.  Without complaint, at all.  Love you honey, and thanks!  Everyone say a quick prayer that I can stop taking the drugs soon....I have no idea if this post is even coherent.  That's lots of fun.

"You Made My Day"

What a fun time today!  I got to pick Natey up from school and drive to Edgewater to do our little play session. I love this time with him so much- just the two of us. 

The session lasted all of 30 minutes but it was very valuable.  As I said yesterday, his speech pathologist from school is one of the instructors, and thus she was there for this.  When we walked in, she commented that she was very excited to see how Nathan behaved around his mom.  I am always writing down things he does at home and sending the info in to school, but they are usually not successful at getting him to duplicate these things when he is in class.  I didn't give him his cup and snack in the car on the way over, although I usually would.  So first thing when we entered the classroom, he's walking over to me, "more, more".  I asked him more what and he very clearly said "cup" right in front of her.  She looked a bit flabbergasted, in a good way.  The "camera" is an ipad, very nonintimidating.  Considering the fact that Nate had just left about 2 hours of drills, he was really very cooperative.  We read his duck book, and he pointed to the ducks before I could ask him to, he talked to the back of the book for about 5 minutes after we were done.  Both his home educator and the speech pathologist mentioned the fact that his teacher shows the kids something on the back of the books they read- both are wondering if he is trying to "copy" that.  Who knows.

He wanted nothing to do with his puzzle or shape sorter.  Once again, these are both things he works on in drills, so I am sure he was feeling "done" for the day.  So I broke out our stuffed Curious George.  The speech pathologist was wondering what exactly our "game" with George is (I guess you could say she was curious, hehe).  This is a "special" George- when you push his foot he makes sing songy monkey sounds (John thinks they sound lewd, and frankly I can't say I disagree. I could comment about the ridiculous faces John makes when we are playing with the monkey, but I won't.  See, I didn't, ha).  I have done many many things to try and capture Nate's attention over the past couple of years.  At one point I picked the monkey up, pushed his foot and made him do this ridiculous dance and then leap in the air at the end of his "singing" and squeal.  Both boys found this hilarious for some reason.  We do it all the time.  It was kind of embarrassing to do it on camera, but I got what I wanted.  Nathan picked George up when I was done and imitated his dance and "leap".  Like I said, any imitation is a big deal.  Then I broke out the "pops".  He wouldn't say it!!!  Typical.  However, he went one better, pointed to them and said "that".  Lack of pointing is a huge red flag in development, one of the "toddler" signs of autism.  The fact that he is starting to do this again (he did it at about a year) is wonderful. 

We continued to play, we chased, we tickled, at one point he grabbed my face in his hands and touched his nose to mine.  I told the instructors about some of his other communicative behaviors, such as grabbing our hands and putting a desired object in them to show what he wants.  Or sitting in his chair and "waiting" to be served food if he is hungry.  At the end of our conversation, Nate's school speech pathologist looked at him and said "buddy, you just made my day." And with that statement, she made mine. 

Progress is Progress

I have been thinking about how to post this for awhile.  I get frustrated with the evaluation systems that they use with Nate, I don't feel that they capture either his abilities or his progress.  So much of it is in this "gray" area that really can't be evaluated.  It's annoying.  This week has been another good one in terms of progress- and I made sure that his teacher saw some of it, even though I had to send contraband food in to school in order to make that happen.

I sent Natey's "pops" in to school for snack time, and THAT he will say for anyone, anytime, anywhere- very very motivated for sugar after a year of basically none.  He has 2 board books about "duck and goose" and he points to the duck picture on each page, even points to one, two, three of them on one page.  The first time he did this (last Sunday) John and I both almost cried.  Who would have ever thought we would consider that so miraculous.  But it was.  I sent the book to school- apparently he sat there like he had no idea what they were talking about.  Luckily his home visit was this week and he did it for the educator then.  So they know I wasn't making it up.  Those are two tangible areas of progress.  But here is what else I have observed:

1.  Today Nathan pulled on Annie's hand and said "come". He then proceeded to lead her up the stairs to get his duck book and then carried it back downstairs and handed it to her to read to him. 
2.  When I came out to visit him at lunch time he was clinging to my leg, obviously trying to keep me from going back into the office.  When that wasn't working, he invented a new game- hug my legs, climb through them, run back around in front of me and laugh like a little ninny.  It was a great distraction technique- I would much rather watch this than work. 
3.  We have these videos for him called "Baby Babble".  They are created by two speech pathologists and aimed at children with speech delays, but specifically kids on the spectrum.  They include a multitude of spinning toys, crazy lights, bubbles and balloons- all things that kids on the spectrum are generally fascinated by.  Nate is completely mesmerized by these videos- but in the past week he has started repeating the sounds that the women are making as well.  Any repetition of sounds or actions is huge for him.
4.  he said bye bye to daddy at bedtime tonight, twice (we will work on night night later, right now the consistency of saying the same thing when someone is leaving is what is important).  Believe it or not, my almost 3 year old has only just recently started saying bye bye, and it is inconsistent to say the least.
5.  This evening for the first time, he expressed to me that he was not ready for bed.  I sing 4 songs to him every night after we read, and rock him.  When I finished the last song tonight he popped his thumb out of his mouth and said "more".  I said "more what?" expecting him to say cup (which is something else he won't say at school and says regularly at home).  He didn't know what to say, he didn't say cup, he didn't say pop, but he rocked his head back and forth and touched my mouth.  He wanted me to sing and rock some more!!!! (is he NUTS??)  I have to say it....holy shit!!!!!  I tested this several times- I would sing one song, stop and say "night night?", and he would say more again and again until I started singing. 

Tomorrow we go back to "More Than Words".  It's performance time.  They are going to videotape Nathan and I playing.  We have specific types of "play" that we are supposed to focus on.  I really don't care about being taped at this point, my only issue is that I don't want to be in the room when they play it for the whole class to critique and "learn from".  Oh well, at least we are all in the same boat.  One of the instructors is Nate's school speech pathologist, so at least we are both comfortable around her.  I just hope that Nate doesn't refuse to do all of the great things he's been doing at home.  But even if he does, I am sure they are used to that too.  Either way, tomorrow Nate and hit the small screen- I so didn't sign up for this.  Oh wait, crap, I did. 

Getting His Point Across

Nathan doesn't say a whole lot right?  But when he does, it is with purpose.  Cute story from today.  Thanks to daddy and his letter writing skills, Nate has been granted extra OT sessions and can continue going twice a week for the rest of the year.  The sitter and I have been talking to him (prepping him) about it all day- you get to see Miss Amanda, go bye bye and see Miss Amanda.

I went for a quick run at lunchtime, and when I came back, Nate was sitting in the window and was very excited to see me.  I sat down with him like I usually do at lunch and we were "practicing" hug- saying and doing.  Then he looked at me and said "come".  This is his blanket phrase for "take me" basically- out of the crib, down from the table, outside, into the car, all of these fall under the word "come".  After about 3 minutes of saying this, he added bye bye!!!  Come bye bye.  My son was asking me to take him to his OT appointment!  I told him multiple times, "Annie take Natey bye bye", but he wouldn't let go of my hand when we both walked him to the door.  When I took my hand away he collapsed onto the floor in a full on temper tantrum.  He wanted mommy to take him, he asked, so why wasn't I doing it?  OK, well that part actually makes me a little sad.  But the point is- he knew what he wanted, he asked for what he wanted, and he expected me to comply.  This is major progress!

"Pops"

It's no secret that language has been a real challenge for Nate.  The few words that he has gained have been a struggle and have usually taken months- "more", "go", "cup".  It's also well known that Nate has been on a very restrictive diet.  We have been allowing a bit of "contraband" lately, as we are approaching the one year mark on this diet, and he has gained what?  Two months of language progress?  Not a ringing endorsement in my book.  His favorite new thing to eat is this gluten/dairy free cereal. One good thing about going back to just gluten/dairy free is that he thinks he is in heaven!  Anyway, he woke up this morning asking for "pops", which is what we named the cereal on SUNDAY!  That's right, he picked it up within 3 days.  Ahhhh....motivation

Feeling Like a Crappy Mommy

Sigh.  Jack is about a month into kindergarten right now, and I am stressed out everytime I open his backpack.  First of all, I am astounded by the amount of seat work they have during their first month of kindergarten.  Second of all, I am worried sick about how much of Jack's is incomplete.  I expected this.  He has major attention issues in a one on one situation, let alone in a class of 20 other five year olds with much less opportunity for individual help.  He also has significant fine motor delays, so even if attention wasn't an issue, it would take him much longer to complete assignments and put him behind to begin with.  As it is, it's a vicious cycle- he hates to write b/c it is so difficult for him, so he focuses elsewhere, and there are a ton of things he can distract himself with in this setting.  I have always worried that I didn't practice writing with him enough at home- I am not worried about that at this point- even if I sucked, his sitter is a teacher and worked extensively with him throughout the summer as did his occupational therapist.  This is just a weak point for him, and I have to accept it.  The bottom line is that when I was Jack's age, we were studying the letter people (remember Miss Obstinate?) and not expected to do even half of what Jack is expected to do.  I had half day kindergarten and remember having a nap time!  Of course it was rural Oklahoma...Blah.

My tactic has been to sit down with Jack every night and complete the work he didn't finish in class.  I could not do this for a living, at least not with a Jack.  After a full day of work and his challenging behavior all afternoon, I am about ready to pull my hair out by the time we finish these pages.  He has so little control of his writing implement- I am constantly moving his hand lower on the pencil and crayon to give him more stability, constantly telling him to keep his feet in front of him, telling him to push down harder, as this too would give him more control.  He is a lefty too, I never realized how different that feels and how challenging it can be to demonstrate things for him.  He is doing much better with tracing, but they want him to write sentences independently (copy them) and he just can't do it yet.  Lack of attention is one thing, but I think this is a bit lofty at this point for any 5 year old.  Oh, and on top of that, today officially marked the beginning of nightly homework.  Really?  Maybe I am nuts.  I will say that he is great at word identification, and he is great with numbers, recognizing quantities, patterns etc.  He has the bean for this stuff, I feel like his motor skills are holding him back big time. 

On a positive note, he comes home everyday talking about Sean and Liam.  His best friends.  Thank you God!  John and I are both ecstatic that he has some buddies.  I am volunteering in his class soon, and can't wait to see how they are interacting.  Speaking of the volunteering- this is yet another reason why I am feeling like a crappy mom.  I can't find a day to do it!  It's absolutely ridiculous.  The days for volunteering are mon,wed, fri.  Every Friday is out because of Nathan's more than words class.  Every wednesday is out because Nathan has OT and the sitter will have the car.  Mondays are technically out because of the timing and the car issue as well, I think I will have to resort to being "dropped off" by the sitter at Jack's school and picked up or walk home.  I find myself thinking about whether it would be appropriate to show up sweaty and panting- I mean I could always jog there right?  I just don't feel like I can fit everything these kids need and deserve into this craziness that is my life.  And notice, I haven't even mentioned my JOB in this scenario.  My head is spinning....must. make. more. lists.

Nighty night.

If Imitation is the Sincerest Form of Flattery...



Then Jack should be feeling pretty good about himself right about now.  Everyday, one of the "boxes" that they check yes or no for at Nate's ABA class is acknowledgement of peers.  Let's just put it this way, they have never checked yes for Nate.  Then how do you explain what I am seeing below?  The first pair of photos shows Jack wearing one of his obsessions, his Wall-E costume, then him carrying his Wall-E robot to OT on Saturday.  And Nathan?  He is dragging Jack's Wall-E costume with him.  He also tries to take it to bed with him at night. 

This next pair shows Jack holding his other major obsession, a plane, which he received as a reward for doing very well with a haircut.  In the next picture you can see Nate grabbing for one of Jack's planes the minute Jack is not around 

Now I'm no child development specialist, but to me, this is significant.  Nate clearly must be watching his big brother and observing his interests and actions at some point.  Not that they're hard to miss, ha.  And he is IMITATING them!  I snagged the below diagram from the Autism Speaks website, as I think it shows a good general overview of symptoms. Except I think it's time for them to move GI disorders and immune dysfunction just a titch closer to the center of this diagram.  There is too much overlap for them to remain "outliers" at this point.

 http://www.autismspeaks.org/what-autism/symptoms 

Also from the website:

Typically developing infants are social by nature. They gaze at faces, turn toward voices, grasp a finger and even smile by 2 to 3 months of age. By contrast, most children who develop autism have difficulty engaging in the give-and-take of everyday human interactions. By 8 to 10 months of age, many infants who go on to develop autism are showing some symptoms such as failure to respond to their names, reduced interest in people and delayed babbling. By toddlerhood, many children with autism have difficulty playing social games, don’t imitate the actions of others and prefer to play alone. They may fail to seek comfort or respond to parents' displays of anger or affection in typical ways.

Now, other than his responses to mom and dad, this has described Nate to a tee.  Well at least from age 15 months on.  However, he is imitating Jack these days.  He "flies" the planes, he LOVES Wall-E.  When he gets home from ABA he runs straight for Jack's toys, the "forbidden territory" and plays till his little heart is content.  Sorry Jack.  Take that autism!