My Necklace

This necklace is very very special to me.  John gave it to me on our wedding day.  I wore it nearly every day for the first 6 years of our marriage.  Then disaster struck.  And it totally mirrored the state of our family.  Last November, around one of our lower points as a family, one of the boys grabbed it off of my dresser and threw it on the floor (apparently).  I was vacuuming and didn't notice it- you guessed it.  I heard that sickening sound of metal being ground against plastic.  It broke into 4 pieces.  At the time, all I could think was, see, broken- just like everything else (yeah, I was in a really good place back then).  I managed to find all the pieces, placed them in a zip lock baggie and put it aside.  Figured it was done for. 

Around Christmastime John asked me what I would like as a gift.  I told him I would like the necklace repaired.  I knew it was a long shot, but it really was very special, and I love it.  So he took it back to our jeweler, who consequently is the same person who sold John my engagement ring, and he said he would see what he could do.  John was able to go pick it up shortly before Christmas.  When he gave it back to me, he told me what the jeweler said.  He told John that he would fix it this one time, but that if it broke again, the damage would be irreparable.  You can see where I am going with this.

I went to put it on, and the chain was uneven, like pretty significantly.  I said very little to John about it, just put it away and counted myself lucky that it was intact at all.  About 2 months ago, I pulled it back out and put it on again.  Yes, it sits a little crookedly on my chest.  No, it's not as perfect as it was before.  But it is in one piece.  I wear it every time I am in something nicer than sweats again now.  I acknowledge the fact that it is slightly skewed, and I am proud of that.  It completely parallels our family life.  Slightly crooked, intact, and beautiful.  That is my deep thought for the day. 

About to Burst!!!

Oh my goodness!  I know I have been posting a bit more than usual, but man is there something to post about.  My Natey.  Something is cooking in that little brain of his, and I am not going to play it cool right now.  There has been a huge change in him this week.  He is attempting many new words- but it is not just that.  It is the way he is using them.  It is the fact that he is trying words like "more" in new ways- for instance, while playing with a toy today that he has to pull a string to make go, the toy stopped, he looked at it and said "more" and then pulled the string again.  He has never really used this outside the context of food before.  He is pointing, really pointing all over the place.  And even when he is not using words, he is muttering under his breath, babbling like crazy.  He had a home visit today, and Kristen was astounded at the difference.  We kept catching words...."I hide", "more work", "tada", those are just a few that I can think of.  It's one of those times when everyone just looks at each other like "did we really hear that?  did you hear it, because I heard it?"  I taped his drills again today- please watch them, and if you didn't see last month's, go back and watch those too.  http://jackandnatesmom.blogspot.com/2012/07/natey-aba-update.html Those took place on July 31st.  I think the most marked difference is his behavior during the drills, his interaction with those around him, and most importantly his attempts at vocalization.  But that's just me.  I am biased of course.  Don't forget, if you are receiving my posts via email, the videos might not show up, you may have to come to my actual blog to view them (mom).  They are worth it!

he says "tada" in this one

says "car" in this one

Watching Nate do his drills involves a lot of sitting on your hands.  I tell Kristen all the time that I have no idea how she holds herself back so well.  I would want to just grab the puzzle piece after awhile and plop it in.  Annie, the sitter, commented on this as well, that she feels like maybe sometimes she hasn't given Nate the length of time he needs to actually complete a task.  Because he really does take his time and methodically figure things out.  Also, today instead of sitting in his little chair and just waiting for the next activity, he dove straight into Miss Kristen's bin of fun to find something to do. And tried to run away from us multiple times.  You can also see him in the videos checking in with me multiple times, something he hasn't been doing very much of lately. 

Can you tell I'm giddy???  I just have this hopeful feeling that I haven't had in a long time.  I try to stay positive on here about the boys, but I have been so scared for Nate.  This gives me a big dose of the hope I have so desperately been needing.  Come on buddy, I am praying that it's time for you to climb a little further through the "window". 

Remembrance

May all of us remember with love and compassion this day.

May we grieve with those who still mourn,

And share memories with those who cannot forget.

May we draw strength from those who bravely responded,

And gave their lives to save others.

May we stand with strangers who became neighbours that day,

And remember their generosity and hospitality.

Above all God may we remember your faithfulness

And learn to trust in your unfailing love

-Christine Stine

"I Want More"

Excellent weekend!  I would probably say this no matter what just because of the weather, which is heavenly, but it was made extra special by a very alert, verbal Nathan.  As usual, John and I are trying not to get too excited- but we did just start him on the "speak smooth" this past week, so fingers crossed.  Today was an especially good day for him.  We went to our favorite haunt, the airport playground this morning, and Nate really enjoyed climbing all over the place.  He did his usual sitting on the ground and digging through the recycled tire ground cover for 20 minutes at a time thing, but he also played with daddy quite a bit.  Got a few good shots....

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He conked out on the drive home at around 12:30 and slept until about 2:30, which is a pretty good nap for him.  He woke up ready to go and more alert than we have seen him in awhile.  He hadn't had lunch yet so I put him up in his seat.  He immediately started pointing around the room, saying "that" over and over again.  He hasn't pointed constructively in a really long time.  This made us feel a little giddy.  Then he said "more cup" and "more bread".  We are noticing some more 2 word phrases like this lately.  We have been the meanest parents on earth for quite awhile, refusing to get him "more" unless he says or at least indicates in some way exactly what he wants.  It seems to be paying off.  His Mimi came for a visit, and while we were sitting there talking, he kept saying "more" again and again.  Since he wasn't telling us what he wanted we were studiously ignoring him.  All of the sudden we hear "I want more!"  Thank God he said it in front of 3 adults, or we wouldn't believe it ourselves.  This was really really big for him.  Later he walked over to his school backpack, pulled on it and said "go bye bye".  Holy mother of moses!  

Here are a few more shots of him focused on his books....so sweet, and new for him....

John, Nate and I were hanging out in the kitchen while Jack and Mimi were playing and Nate started in with one of his favorite games with mommy.  It's kind of embarrassing, but he likes to smack my head to the side while I make this ridiculous noise and then laugh like a little maniac.  He also loves to shove his finger down my throat- not so funny to mommy.  PLEASE excuse my presence in the below video.  I just wanted you to see Natey having fun and really engaging.  I also wanted you to see how affectionate he can be.  I hear stories from other parents of children with autism about how disconnected they sometimes feel from their children- how they never get hugs, or eye contact, how they feel like their kids don't even notice when they're not there.  I don't know if I could live with that, honestly.  I am so so lucky that this boy is so loving.....

Melatonin, schmelatonin

Dag nam it!!!  My great white hope has been at least temporarily dashed!  I mentioned in a recent post that I finally broke down and ordered melatonin for Jack- it is a natural sleep aid that many parents I have spoken with use for their children on the spectrum- particularly kids with aspergers.  Those brilliant little minds just can't seem to shut down enough to sleep through the night.  And after 5 1/2 years of not sleeping through the night- John and I are well, tired.  And John is cranky.  I, of course, am completely charming at all times (right honey??? lol)  I figured that this weekend would be a great time to try it out, as Jack is already exhausted to begin with from his first week of full-day kindergarten.  Surely this combination would give us a really really good chance of a full night's sleep.

So I gave him a dropper full of melatonin at about 6:45 last night.  By about 7:20 his little eyelids were drooping, and John and I were practically salivating at the thought of him going to and staying in bed without a fight.  He passed out almost right away.  And Nathan being Nathan fell asleep while I was rocking him and singing (maybe it's a defense mechanism, haha).  So by 8:15 we were free!  Usually Jack is up and down at least 10 times before going to sleep, so this in and of itself was a pretty big victory.  We had a nice, quiet evening, went to bed, and then.....

3:15- moooooooommmmmmmm!!!!!  help, starscream's gun!  where did it go? where is it?  help, help help!!!  You see, here was my first mistake.  Yesterday afternoon, as a reward for being a good boy his first week of school I gave him a small transformer that becomes a plane.  I had to give it to him in the afternoon because of school, which is unfortunate because the first rule of giving a new toy (particularly one that relates to an obsession) to a kid with aspergers is that it must be given to them first thing in the morning.  It is the only way that they have the chance to calm down a little and be able to unwind enough to sleep by bedtime.  We have had many a sleepless night when Jack has been given a new plane, or robot.  We once gave him a ride-on airplane, right around the time Nate was born, as a big brother present.  I had to cut a picture of the plane off of the box and tape it on the wall next to his bed in order to get him to lie down.  And none of us slept a wink that night.  I kinda hoped we were past that.  Anyhoo, I found the gun- without my glasses on- it's approximately the size of my thumb, so that was pretty impressive.  I told him to stay in bed.  returned to our bed

3:45- thud!!!  mommy, daddy, my bed is too crowded!  I have to sleep with you!  OK, so the reasoning behind this excuse is a mystery to me. 1 twin bed to yourself, or a queen bed with 3 people....which has more space?  Right?  So I walked him back to bed, told him if he wanted to keep starscream he'd better stay put this time, and went back to our bed.

4:20- I can't be alone!!!! I'm so lonely!!!  Mooommmmyyyy come here!!  I need protection!!!  I sent John this time as I was not going to be so comforting at this point.  Plus, John often conks out while in there, and Jack follows suit, and then everyone sleeps.  No such luck.  John came back to bed after the requisite 10 minutes and the rest of this early morning hours were spent shuffling back and forth, trying to get Jack to stay in bed, and finally giving up at around 5:30. Then tolerating him lying between us and alternately kicking us in the face and shins depending on what position he had thrashed himself into at that point for about an hour.  Then- breakfast.

So I remain my same zombie self.  I fell asleep in the OT waiting area this morning, as usual.  We WILL try again tonight.  Pray for us.  and for Jack if he doesn't sleep.  Kidding.  kind of.

Greeno and Vino

I am starting to appreciate these Target gift cards from Hopkins more and more.  This SEED study is no joke, at least once a week I get a new packet in the mail to fill out, and every other week I have an interview of some type.  And I am not just talking a few quick questions, next week's interview is maternal history and I have been told to expect it to take approximately 2 hours.  Two weeks after that is Nate's developmental history- how long is this one?  4 hours.  And then it's in to the hospital for all of the hands on testing- that is 8 hours.  I get now why the gift cards are necessary to make this study happen in any significant capacity. This is a major commitment for any family.  I would still do it for nothing, but I can see how it would be difficult for families to complete all of this with no motivation other than helping humanity and maybe gaining some insight for their families.  That insight, in my eyes, is worth it's weight in gold, but not everyone would see it that way.  So anyhoo, it's nice to see the gift card in the mail when you realize that $20 is really not that much for 2 full hours of data collection from a parent who could be using that time to help their special needs child. I am thinking that it would be a good idea to save the gift cards to use for appropriate developmental toys for Nate, or for equipment his therapists recommend.  You can find almost anything on target.com.  

When I got this packet in the mail, I realized just how much my prenatal care is about to be scrutinized.  Not to mention my health prior to my pregnancy.  And because I breastfed  Nathan, my health status will be followed for the full amount of time I was nursing- which is an additional 15 months.  Of course I did everything I could to be healthy during my pregnancy and while nursing.  I am glad that I can honestly answer that I didn't have one drink or smoke at all during my pregnancy.  Maybe a few glasses of wine while nursing, but I was always careful to pump and dump.  I never took any medication stronger than tylenol or benadryl.  As a matter of fact, when I weaned Nathan and realized I could finally have advil, I was on cloud 9.  Talk about medication naive.  I had to keep reminding myself that if I had a headache, I didn't have to just sit with it.  That being said, when I started to think through my pregnancy, I remembered a few things. For instance, when I was about 20 weeks pregnant, I got a bad case of food poisoning and ended up in labor and delivery twice for IV fluids and IV zofran.  I also took zofran for nausea during my first trimester.  Without it, I would get sick up to 8 times a day- pretty intolerable with a 2 year old and a full-time job. This of course freaks me out- I mean, moms thought thalidomide was safe in the 70's right?  Now thalidomide is used to treat cancer....how about that?  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001053/  But so far, no significant negative effects are known about zofran, it is supposed to be perfectly safe to use during pregnancy.  http://www.drugs.com/zofran.html  Even knowing this, if I could go back, I would take the pukey feeling. I would take that over this feeling of worry that I caused problems for my baby.  

So on the same day that I got this packet, I got the notice that it is time for Nate's next infants and toddlers meeting soon.  This is his....wait for it....one year progress report (by the way this also makes it my 6 month blogiversary- and with over 7000 views I just want to thank all of you who read- I really appreciate your support).  Can I skip it?  Honestly.  I don't want to go.  I don't want to see sympathetic faces.  I don't want to hear a bunch of half truths and empty reassurances.  I know the score.  He should be a lot further along than he is at this point.  He should be verbalizing much more than he is.  I don't need to hear it from someone else, I know.  This is with 5 days a week of ABA, 2 days a week of OT, constant work and encouragement at home, and wonderful support people within the family.  I can not think of much else we could do other than wake him up and perform drills in the middle of the night.  And I don't think that would be very effective.  Especially when mommy passes out in the middle of it all.  We also need to have the conversation about where he will go in December, when he turns three.  John and I have to attend an information session about our options soon.  Am I scared about this?  Yup.  Because I want them to tell me that there is a circus of intervention available around the corner, and at this point, no matter what is offered, it's not going to feel like enough.  I want an army of practitioners all focused on him, telling us what to do, figuring him out.  Is this unreasonable?  Of course.  Do I care?  Not one bit.  I got a call from the insurance coordinator at the boys' OT last week telling me that almost all of Nathan's covered visits for the year have been exhausted.  I find it absurd that we are allotted 60 visits for therapy- this is not just OT- this is OT, PT and speech combined.  So if he had to have all three, he could only have 20 visits of each per year?  How effective would that be?  I called the insurance company to see how we go about getting additional visits approved.  It turns out that the county (my husband works for the county) HR department has to approve it.  I have never heard of this- keep your fingers crossed that they work with us on it.  I am prepared to throw a fit if necessary, or sick our pediatrician on them.  We started our "speak smooth" supplement 2 days ago- Nate is taking it very easily.  John and I keep joking in the evenings that he is going to wake up tomorrow and tell us good morning.  Wishful thinking.  I am hearing the mom's of all of the kids that were born in the three months after Nate talk about their little ones' first days of preschool, many of them are attending the same school that their older sibling went to.  And I realize how much I have been insulating myself from people with kids Nate's age.  I almost don't even realize how far behind he is at this point because of it.  Self preservation.  I'm not ashamed of it- it's just another aspect of the "new normal".  My kid is not going to do these same things- but as I have said before, that doesn't make his accomplishments any less special.  

So I could have chosen to dwell on all of these issues all evening.  I certainly had enough to think about to pass the time- last night and many many more evenings.  But last night I had more "important" things to do.  Recently, the play group that we have been a part of since Jack was about 3 months old has for all intents and purposes, disbanded.  Most of the kids are in school, and even when they are not, we are all running around like freaks trying to get a million things done.  So we did what we should have, in my opinion, done years ago.  We changed our online schedule from playgroup Fridays to mommy's night out once a month.  On the books.  Mommy time.  Every month.  Praise God!  So instead of completing study paperwork, or worrying about our impending meetings, or insurance hurdles, I went out to a wine bar with 8 of my favorite ladies.  This was not just for fun- this was a necessity.  Mommy's medicine.  Always great to catch up with the people who have seen you in stained sweats, greasy ponytails, with bags under your eyes, and a really BAD attitude and still like you!  Oh, and to put on real clothes and makeup for a change too. 

We all look possessed in this picture....oh well

We clean up pretty well if I do say so myself.  Thanks ladies for a great night- looking forward to "mommy play group" from here on out!  Even though I have a killer headache this morning.

Family Time

Quiet weekend on the home front.  Kind of nice for a change.  I continue to believe that if I had a three day weekend every week my house might actually be clean.  Oh well.  The family spent some time with each of the grandparents- my parents on Sunday and John's mom today.  It's been awhile since we have had the time to just sit down and have a meal with each side of the family and it was really nice.  Lately whenever John or I see our respective parents we are running out the door to an appointment or a meeting.  It was nice to stay put and enjoy each other's company.  AND  I didn't have to cook two meals.  :-)

I am very impressed by how much everyone has respected the boys' diets in our family.  I hear stories all the time about families not only not providing food the kids could eat but even giving them "contraband" foods.  My mom cooked a fully gluten and dairy free dinner including dessert.  Even John liked the dessert and he generally avoids gluten free sweets like the plague.  So that's a major compliment.  John's mom had multiple things both boys could eat for brunch this morning and had bought some special bars for them, which I allowed Natey to eat.  He rarely gets anything sweet, so he gobbled it up.

I was commenting to my mother in law this morning that I am amazed at the antics all of the grandparents are willing to put on in order to entertain the kids.  There is no way any of this would have happened when WE were kids!!!  For instance, yesterday my mother was looking at a book she bought especially for Jack that is full of different bird calls (it has the audio).  He is so obsessed with the book that we have to set the timer before they start looking at it, otherwise they could be there all day.  Anyway, I look over and my mom is sitting there with her head on the couch and looks like she's sleeping.  I asked her what she was doing, if she was ok.  She whispered to me that Jack wanted her to pretend she was asleep and to then pretend she was surprised by the bird call when he pressed the audio button.  So he presses the button for one of the many varieties of Orioles contained in the book and my mom's head shoots up and she gasps in a very surprised voice.  Then she puts her head back down and pretends to be asleep.  Repeat, repeat, repeat.  What would she have said if I wanted her to do this when I was a child?  Well first of all, she wouldn't have bought a book with audio because she would have had to listen to it continuously since we never "went home".  But I can guarantee that she would not have been collapsing onto the couch just to appease me.  I love it!  She also does a mean humpback whale impression, which she had to repeat for months last winter.  Ha. And John's mom is always "flying" around our house pretending to be one plane or another.  Or pretending to be the mama allosaurus while Jack is the baby.  Today she was schooled on chinstrap penguins, and white lions for hours.  While John and I stared at each other in relief that we were getting a break from all of the "knowledge".  I'm lying.  Actually we were chasing Nathan up and down the stairs and standing over him trying to force him to say words.  What can I say?  We rarely get that kind of opportunity when Jack is around- he never stops talking.  Seriously.  Never.  We were working on "go up" and "go down".  Right now he pretty much sounds like he is saying "gum".  Hey, it's something.

Nate's pediatrician recommended a new supplement when I took him for his checkup last week.  It's called speak smooth.  http://www.speechnutrients.com/.  Not going to hurt him- it's mainly concentrated omegas and vitamin E.  So waiting for that to come in the mail.  Oh and I finally bit the bullet and ordered melatonin to try with Jack.  Mommy and daddy need some freaking sleep.  Pray for us that this works.  This is one of those kids who becomes hyper with benadryl.

We have had a pleasant surprise with Nathan as of late.  He kept disappearing; he often wanders around by himself, so I didn't think much of it.  But I could hear him babbling on the monitor so I went up to his room to check on him.  I found him "reading" books.  We have never really been able to get him to focus on books, except at bedtime.  But for about the past week, every time he wanders off that's where he goes.  There are books all over the house, our room, the living room, the dining room, the kitchen.  And he just keeps picking them up and looking at them.  I consider this a very good sign.  He has also figured out how to climb up into our big bow window in the living room.  Here is how I found him on Sunday morning...

After "reading" for awhile we switched to blocks.  A symptom of autism is the whole "lining things up" thing right?  Yeah, this kid does NOT have that!  As a matter of fact, I can't even put the blocks next to each other without him knocking them around.  He likes chaos :-).  He is in the right house.

Jack joined us for some bouncing on the trampoline.  He has another loose tooth and one of his "grown up" teeth is coming in.  It looks HUGE

Lazy weekends are unheard of around here.  It was really nice to kind of sit back and relax.  We actually had two days where we didn't have to get the kids out the door by 8am.  That was really nice!  Tomorrow is the first day that they both go to school.  This house is going to be so incredibly quiet! Will need even more coffee than usual.