What Jack Is Missing

While much of this post is quite funny, it makes me a bit sad to write it.  I’ll explain why at the end.

On Saturday, Jack and I went to babysit for a friend.  Her husband is in the military and being deployed soon, and with no family locally, they have been kind of stuck when it comes to spending a day together.  They were able to go to Six Flags for the day, just the grownups, and I was more than happy to help them.  They have 3 kiddos, a 4yo daughter, a 3yo son, who was in Nate’s ABA class with him last year and a 15 month old.  Hey, I was a nanny for years, I even lived in for a while, I can take ‘em!

I learned several things on Saturday.  First of all, I’m not nearly as nice as I used to be.  I approach caring for children in a much more “parental” way than when I was a nanny, and I guess that makes sense, because, well, I am a parent now.  The day was actually kind of tough for me, the kids were great, but I’m not used to staying in one place for long, the kids and I are always on the go on the weekends and so I went a bit stir crazy in this situation. 

I also learned quite a bit by watching Jack and their daughter Sophie interact.  It was very challenging for Jack to be there.  First of all, he had several of his new planes with him, and was told that he had to share, or the planes had to stay in the car.  He did a great job with this over all, but I could see on his face that he was struggling. 

The biggest thing I noticed is that Sophie really challenges Jack.  I would have to say that they have similar personality types.  They are both intense and opinionated- you can tell that they are the oldest children in their respective families.  Jack watched a princess movie, Jack played with dolls.  Jack was being told what to do by another child, one who is younger than him, and he listened.  He was totally dominated during parts of the day.  I almost fell over laughing several times when I heard Sophie commanding Jack to dance, because she wanted to put on a talent show.  Or she wanted him to have his chair positioned in a certain way at mealtimes, and she wanted him to sit very close to her when they watched a movie.  Their back and forth was really something to see, Sophie is very rule oriented, and Jack likes to contradict everything that comes out of a person’s mouth.  Jack actually lost most battles throughout the day- I could tell that when she told him what to do, he didn’t know quite what to do with himself.  Don’t get me wrong, they got along, and they had fun, but they interacted in more of a sibling, bickering and playing way, which is different than how I have seen him interact with other buddies.  Of course, this “play date” lasted about 9 hours, so that’s a bit different too.

I can’t quite remember how it came up, but yesterday Jack was watching something on T.V. where the character was asking for a baby brother or sister to play with.  He turned to me and said he wanted a baby brother to play with.  I told him that he has one- Nathan.  He looked at Nate, and then at me and John and said, “but Nathan doesn’t let me play with him.”  Total devastation.  When I looked at John I could tell he was feeling the exact same way.  We didn’t know what to say to him- he’s right, Nate would much rather be by himself.  And Jack does try- he is rebuffed 9 times out of 10.  He may have a little brother, but he is really missing out on the sibling experience.  Realizing that just about broke my heart.  I am really glad he had this experience on Saturday, but at the same time I think it made all of us more aware of what he is missing with Nathan in his current condition.   

An Awesome 6th Birthday

My boy.  Jack did absolutely fabulously today.  It was the best birthday I can remember for one of the boys in a long time, maybe ever.  It was the first time for several things- first time Jack basically "created" his own guest list, and the first time we had a party away from home.  Best. thing. ever.  Instead of running around like a fool cleaning the house last night, I was wrapping gifts.  Instead of decorating all morning, I had a nice snuggle with the birthday boy and watched him unwrap gifts.  Awesome. 

As always, I tried to keep Jack's party pretty small.  New strategy this year and it did not work :).  We had his party on the Eastern Shore in Maryland, about 45 minutes from home, at a horse farm.  I let him invite the kids from class that he wanted to come, figuring maybe two or three of them would make the trip, then our family friends.  One kid RSVP'd no- we had close to 20 kids there today including siblings.  I was slightly worried for Jack, but we were outside the whole time and there really was no noise factor to overwhelm him.  And he had an easy exit if he needed a break.

This farm- it's incredible.  It is called Dominic's Farm in Queenstown, MD and it has several very special aspects to it. 

http://www.dominicsfarm.com/

Dominic is the name of the owners' son.  He has autism and is grown.  He still comes home and mows the lawns every weekend.  As a result, the owner, who runs the parties, is incredibly sensitive to the needs of kids on the spectrum and adjusts things accordingly.  For instance, she had us come out a few weeks ago and spent about an hour taking us around, introducing Jack to the animals.  And he remembered every single name- has been talking about riding on Zach ever since (horse).  She keeps the "structure" very flexible.  And because it's such an open area, any type of behavioral issues from either boy are much less glaring.  Nathan ran around shaking a rope for a good 20 minutes and stimming, and I don't think anyone noticed.  Although to be honest, I really just didn't care as long as he was happy. 

This is Jack sitting beautifully listening to Miss Kathy talk about being careful around the animals.

Jack and Sean watching Angry birds while waiting to ride

Mommy's proudest moments today:
- Jack handled letting other kids ride the horse like a champ- no meltdowns at all. 
- Jack decided he did not want the birthday song and with the help of his OT made it very well known- he usually cries at the end of the song, all of the clapping really bothers him, and he recognized this and avoided it. 

Most special moment- I was walking to the fields with the boys, holding Nate's hand, and Jack was walking next to us.  One minute I looked down and Jack was holding Nate's other hand.  I cannot stress enough what a big deal this was.  This has never ever happened before, it was such a wonderful sign of affection and it still brings tears to my eyes.

I am proud of myself.  I realized as I sat down to write this today that I was more at ease with the boys and their behaviors today than I have ever been.  I did not offer one explanation for either of their actions.  Now, they were both very very good, but as I said, Nate was shaking rope and running laps for a good part of the party.  Jack's anxiety was very obvious at times and I am sure that some people wondered why he opted out of the birthday song.  I felt no need to explain.  I don't think I uttered the word autism all day, except when talking to the owner of the farm about treatment options before the party.  This is a huge first for ME. 

Hilary Clinton said it takes a village to raise a child.  That's one child, and I assume this child is not on the spectrum.  It takes a lot more than that to raise two children on the spectrum.  And damn, we have built one Hell of a village over the last several years!  I looked around today and behind the kids and parents from Jack's class saw some of the most caring supportive people I have ever known.  My mom and dad, my little sister, John's brother, some of my very best friends- Joann and Helen and their families, another special needs family we have connected with who understands our life like no one else ever could, a family from the boys' OT practice.  Preschool friends who Jack actually connected with back then- which was huge back then.  Jack's OT made the trip to see him- she has been working with him for three years now and has earned that gorgeous Jack smile-  not the regular cute smile, but the one reserved for people he really loves.  We missed Jack's mimi, one of his most favorite people, very very much.  She has been an invaluable support to our family during our "rebuilding" process, and Jack just LOVES her.  But we will see her tomorrow.  All of these people are here for the boys, here for our family, and their presence made Jack, and frankly me and John feel secure enough to really let our guard down and have a great time.  I know that Jack will never forget this experience- and all John and I could do for most of the party was grin at each other like idiots, because we knew we kicked some serious butt on the party front today and our little boy was thrilled.

Jack Put It Best....

Nate has had a couple of pretty good days.  Words have been flowing quite a bit more freely than we have heard, well ever.  Yesterday he was mad when I went to get him dressed for school and he said "I no want get dressed"  or something close to that.  Last night John asked him if he wanted to go upstairs with mommy and he kind of repeated it.  He was trying to say "one two three" with Miss Gwen during his session.  He asked for more song at bed.

I am happy about it.  But over time I have learned to take each day as it comes, and all progress as a "good day" until Nate proves otherwise.  A year ago, I would have felt like "here we go!".  That this was "it" and Nate was going to start making huge leaps like some of the other kids.  I have set myself up for disappointment too many times, so now, I try to just smile and think, yes, he's in there somewhere.  I restarted his leucovorin after hearing one of the doctor's lectures on cerebral folate deficiency and being told that hyperactivity on leucovorin is actually a good sign.  I started at a smaller dose to begin with and will gradually increase, as treating cerebral folate deficiency is showing great promise in autism research.  Basically, I could dump a truckload of folic acid on Nathan and it might not make it into his brain, because he lacks the ability to transport the active form across the blood-brain barrier.  The treatment for this is folinic acid (a further broken down form of folic acid).  Which by the way, is what leucovorin is. 

There are some very interesting articles on this if you follow the link below:
http://www.rossignolmedicalcenter.com/articles/


So we are doing that.  And after listening to Dr. Anju speak, I also started Nate on something called "yeast aid", which contains multiple natural ingredients that support the immune system and help control yeast in the body, things like olive leaf extract, goldenseal (thank God he will now pass his drug test, lol), oregano, and cranberry extract.

http://kirkmanlabs.com/ProductKirkman/112/1/Yeast-Aidandtrade;-Hypoallergenic/

So those are the latest things I have changed.  Oh, and John has started doing some "juicing" as well.  His first John driven intervention- whoot whoot! 

I am watching, and I am waiting.  I am not allowing myself to become too excited at any positive changes- they could be transient.  I of course really really hope they are not.

Jack said it best this morning.  I asked him to go open Nate's door because I could hear him in there awake.  Jack said to me "I like Natey, do you?"  I answered "of course I love Natey".  He then said "I just have to wait right?"  I asked him what for, although I already knew the answer, he has been saying this since Natey was born.  And he said "for him to get bigger, so someday he can talk to me, right?".  He was looking at me so earnestly, so obviously thinking that Natey really is still a baby, that I felt the need to sit down with him for a few minutes and explain in more detail than I have in the past that Natey is having a lot of trouble learning how to talk, which is why we send him on the special bus every day.  He seemed to get it, and in the end, he is right, we do just have to wait.  We can try everything under the sun, but in the end, we can't control this.  Just have to pray and wait. 

Decisions, Decisions

As parents, we all want to provide for our children.  As good parents, we want to offer opportunities for growth and development outside the necessities.  But where is that line?  What is a necessity and what is an enrichment activity?  It's a tough call.  We live in a pretty upper middle class area where you feel even more pressure as a parent to have your child enrolled in multiple extracurricular activities in order to offer them a level playing field to that of their peers.

Add Autism to the mix and that line between enrichment and necessity becomes even more blurred.  There have been many different types of therapies researched for kids on the spectrum that have been found to be beneficial.  There's no way I can list them all, but here are a few:  equine therapy, aquatic therapy, vision therapy, occupational therapy, speech therapy, social skills groups, special needs sports.  The pressure on an autism parent increases because like all potential therapies for our kids, we feel a desperate drive to provide these things.  What if one of these activities really helps one of our children to make a breakthrough? 

So of course I want my kids involved in all of this.  Never gonna happen.  The boys are both in OT, which is mostly covered by insurance, but just to give you an idea, that alone (and this is just copays) comes out to $45 a week.  OK.  So swim lessons, not so bad, right?  WRONG.  For a special needs child, lessons range from $40-50 for each lesson. I have checked with all 4 local special needs options.  Equine therapy, about the same.  The boys could have speech covered by insurance, but with our insurance, they may have 60 sessions each year a piece and this encompasses speech, occupational, and physical therapy.  How on earth does that make sense?  Oh, I see your child has greater deficits than the child who only requires OT once a week.  I see your child needs both OT and speech.  OK, they can have both, but they can only go to each twice a month.  Now how is the child with greater needs going to make progress given this set of circumstances? 

Now, add to this....wait for it...two kids who could benefit from all of this.  Can someone explain to me how on earth I am to provide these opportunities for my children?  Because you see, they already require daycare, special needs daycare and guess what?  You got it- because they have special needs, it's more expensive.

When is someone going to give our families a break?  I know that our children have special needs.  I know that teaching them requires giving more of one's self.  Believe you me, I know.  Thing is, my work didn't start paying me more in order to assist me in taking care of my special needs kids, last time I checked there isn't a larger tax deduction for a child on the spectrum, and I'm pretty sure that no one has set up a trust fund for either one of my kids without telling me.  So HOW am I supposed to choose which child gets what?  Which child needs these things more?  If I won the lottery, I would be giving money to every autism family I could find.  I would be setting up a "therapy fund" for other kids with autism.  It continues to sicken me that on diagnosis, when I asked what I could do for my child, the doctor replied "how much money do you have?"

Sickens me. 

I Guess It Was Inevitable

Today was Nate's 3rd birthday.  I'll be honest, last year, our family was in such a state that I literally cancelled Nate's 2nd birthday party, made it close family only.  So I guess I felt the need to make up for that on some level, even though I know he's not really aware that he missed anything.  At the same time, he would not enjoy a "big" party- he would be overwhelmed, overstimulated, and would be likely to have a meltdown.  I was a bit disappointed that several of our friends were not able to make it initially, but in the end I think it was for the best.  I would say that Nate was a bit overstimulated even with a smaller party.

I was finally able to pinpoint something that Nate really loves this year- so I took the idea and ran with it.  Really simple- balloons!  They were EVERYWHERE.  And Nate noticed right away this morning- I started hanging these balloon banners that I made and his eyes got so big. I really do feel like he knew that today was "about him", although he doesn't understand the whole birthday concept.  One thing that made me really proud this morning- big brother Jack gave Nate his gift, helped him open it, told him happy birthday and hugged him.  And Nate noticed the gift- a duck and goose book and stuffed duck and goose.  I have been working with Jack to help him understand a bit better the idea that he can give, he is not always going to be the receiver.  It's been a tough concept for him. 

The party went well, great group of people, all of whom really care about Natey and understand where he "is".  No surprised looks when he ran back and forth, collapsed on the floor, or stood on his head.  He did sneak to the treat table and snatch some stuff which tickled me- that meant he was paying attention to his surroundings.  I even took one of my first "risks" since the boys were diagnosed.  Nate has a little "buddy" from his old ABA class- which means they occasionally acknowledged each other's presence, and his mom and I have been in that Friday speech class together.  So I invited their family, which was a huge leap of faith for me.  Letting someone new into our lives- and I am so glad that I did.  They are new to the area, and have a special needs child, which must be a lonely place to be.  Such a nice family, and hopefully, some new friends.  Friends that understand fully what it's like to be raising our kids.  Jack did pretty well, other than a minor argument with a little girl over the Christmas tree lights- did great during the birthday song, as I had "tasked" him with helping Nate blow his candles out- not even a hint of a meltdown.  We did a simple craft, played with balloons (including those "punch" balloons- remember them?), and had cake.  It was a good time. 

and why wouldn't Jack wear his airplane tie???

So what was inevitable on what I would consider a good day?  Mommy's feelings, that's what.  I feel guilty about it.  I am happy that everyone had a good time, that there were no issues.  But it is milestones like today that make me realize what a huge amount of work we have to do.  When I see Nate next to his neurotypical peers, it's almost too much.  Jack may seem a bit quirky to me (most people don't even notice) in groups, but Nate just doesn't even live in the same neighborhood.  He spent about 80% of the party playing with ribbon that was used to tie up the balloons.  And he ate.  He acknowledged his little friend a few times and sat at the table with the other kids.  He even said a few phrases.  Of course he also showed off his new skill of knocking over our furniture- kid is strong.  I managed to smile the whole way through the party. 

After everyone left, we tried to sit down with my parents to have Nate open a gift or two.  He had ZERO interest.  Less than zero- he was annoyed by our intrusion.  He wanted the ribbon he had been playing with.  My parents are very good sports, and understand the situation, but it hurts to watch it.  I mean, what would a typical three year old do with a pile of presents?  Rip into them!  We tried to open about 4 gifts today- the only thing he played with was this stuffed mouse that came with one of his toys- it has a long dangly tail so he could swing it around.  I did it.  I broke down.  I left the room, and I made it until everyone, even my parents, had left.  I had a good cry.  I am proud that he is three.  I am proud of how hard he has worked.  But I am sad.  And it's not going to go away.  It's so hard to watch him in his own little world in these circumstances, and feel so helpless to get through to him, to help him enjoy things that other children his age would adore.  He did not miss out today, not for him.  He enjoyed all of his day.  But as his mommy, I wish, well so many things, but most of all, today I wish he could have blown out his own candles and enjoyed his presents. 

Naked

When I take a chance in my life, when I allow myself to be vulnerable, I feel naked.  Frankly some of my posts on this blog have been so personal that I would have felt less exposed if I were naked.  And that's saying something.  There have been many times when I have been terrified to hit the "publish" button, afraid of mean comments, too much bad advice, you know, negativity.  It's never happened.  Never.  I have been in relationships in my life where I have felt constantly judged, never good enough, not pretty enough, not thin enough, not smart enough, not shallow enough to be accepted.  I never feel any of those things here.  I actually don't feel any of those things in the autism community in general.  Walking this road has taught me a lot about not judging others, their parenting, etc.  But it has also taught me quite a bit about feeling accepted myself.  It has brought me to a point where I will accept nothing less.  That's what I deserve, and that's what everyone deserves, including our children.  I feel surrounded by loving and supportive people- enough so that if someone isn't able to see me as a person of value, someone worth knowing, then I don't want to know them.  My previous tendency was to try even harder with people who didn't seem to "get" me.  Insecurity central.  And it backfired every time.  I don't have ongoing relationships with any of those people today.  If someone chooses to push my friendship away, hey, they must not want it!  How about that- simple concept, difficult execution. 

Anyway, there is a point to this.  I am incredibly grateful for all of the support, GOOD advice, and general discussions that this blog has generated.  I have enough readers at this point that someone responds to every post- and quite often makes a really good point, or offers support that I didn't know was available. 

My class with Nathan is turning out to be a similar experience.  I am really coming to look forward to Fridays for a whole new reason- I love learning new methods for communicating with Nathan, I always leave feeling incredibly uplifted and motivated.  And the other parents- that's the best part for me.  We are all very different- different ages, backgrounds, etc- but we have such a strong common bond.  As the weeks pass we are all opening up about our children, our families, our experiences with the autism community, different doctors, therapists, etc.  It's a whole new type of education.  There is one mom, whose son is in Nate's ABA class, who I chat with quite a bit.  The group was having a discussion about evaluations, genetic testing and other diagnostic tools and she revealed that her pediatrician told her that she needs to have her 6 month old son evaluated; that he is showing developmental delays already.  This doctor has not even met her older son who goes to a specialist, and was not aware that he is on the spectrum.  She welled up just talking about it.  I seriously wanted to wrap my arms around this woman who I barely know.  If finding out that one of your children has challenges is painful, finding out that another child is affected is excruciating.  All of the thoughts that run through a parent's head- how can I possibly get another child to all of these appointments, how can I possibly afford all of these appointments, what does this mean for my family?  And my heart just broke for her.  She then said that she wants to wait a few months and see if he catches up- my first inclination then was to jump across the table, shake her and say do it now!!!!  The earlier the better right?  But every parent has to go through this period- before they even know for sure that something is amiss- of mourning, of accepting what may be coming.  And I get that.  So all I said was, it won't hurt a thing, or cost a thing to have the school system evaluate him.  And early intervention won't cause him harm.  If they are willing to offer it, we should grab onto that right?  I hope she calls.  I don't know what they would do for a baby that is 6 months old- all I could think of was that if she doesn't call now, and he ends up having issues, she will beat herself up later, or at least I would.  What a huge thing to discuss with virtual strangers- but in that setting, we're not strangers at all.  We are very likely the only people who understand the magnitude of what she is saying.  The only ones who won't say things like "I'm sure he's fine".  Because we all know that statements like that will not make her feel better- nothing will make her feel better except hearing someone with credentials say that her baby is developing typically.  So I am saying some prayers for her and her family tonight, and I hope that you will too.  Pray for her little bambino and the best possible outcome for him.  And thank God that his mom is already so well connected within this community, she knows what to do for him.  While I'm at it, thank God for other parents with similar experiences, and thank God for all of you, who make "baring" it all much less intimidating.  I can't tell you how much it is appreciated. 

Happy Halloween

As with almost everything in our lives, I look at Halloween this year, take a deep breath and think- so. much. better.  Than ever, but especially better than last year.  This time last year I'll be honest, John and I weren't speaking.  Nate was going downhill pretty rapidly and spent most of Halloween screaming.  At one point that day a relative turned to me and asked if he was EVER happy.  That stung.  But it was true- he was so clearly distressed and we just didn't know yet how to help him.  Like I said- this year- so much better.

What did we do differently?  Well, for one, my expectations were completely different.  One of my favorite quotes, which has taken on a whole new meaning these days is "Nothing breeds gratitude like lowered expectations."  Except I would reword it slightly and say altered expectations.  Not necessarily lower.  I just took the attitude that anything we were able to do with Nate would have to be enough.  Our children our very very loved and had all of their grandparents appear to go trick or treating this evening along with one of mommy's best friends and her family.  So there were plenty of hands- if I had to take Nate home, Jack would definitely not miss out.  Other adjustments- I didn't get what one would consider a "real" costume for him- I found an owl winter hat and cape on etsy.com and he wore that.  He can wear the hat all winter so that's a plus.  Also, it wasn't uncomfortable, didn't feel cumbersome or odd to him.  This worked out well, and he wore the costume all evening without complaint.  I also took him in the stroller, he feels more secure in it than in the wagon we used to take.  And I brought him chex cereal, his current favorite to munch on.  He made it the WHOLE way with the bigger kids.  We didn't take him to more than maybe two doors- He doesn't like the constant transitioning, so he hung back with the grown ups for the most part.  My goal was for him to be out with us, able to observe what he wanted to, and feel protected and secure.  And I think we made that happen. 

Jack is a whole other ball of wax. He wanted to be Wall-E, for the second year in a row.  We had the premade Wall-E costume last year and had superglued the goggles back together at least twice before he ever went out to trick or treat.  So I decided to upgrade the costume a bit- I made new goggles and I made him "treads" which were basically corrugated laptop packing material spray painted silver and tied on with elastic string- Jack LOVED it!!! He is sleeping with the whole get-up on his bedside table tonight.  He had his issues during the whole experience- he had major anxiety and had the occasional slip of the bad word or freak out.  He did better as time went on and by the end of the evening was doing very well.  He has a "script" that he used every time someone answered their door- do you know who I am, do you like my wall-e goggles, his eyes look a little sad huh?  He tries so hard, my little love.

The best part of the evening was being surrounded by family and friends.  Both grandmoms came trick or treating, and my friend Helen, her husband and her daughter Lila came with us as well.  It was lots of fun!  

Another victory for our family!  Happy Halloween everyone!

Empowerment Through Acceptance

Accepting the limitations that autism brings is one of the hardest parts of dealing with the diagnosis.  That and wondering to what extent your child will be affected by them.  I remember that at about this time last year I was at a birthday party and a good friend of mine, who's daughter is slightly younger than Nate was there as well.  Her daughter was pointing to all of the animals on a board, naming them and making their sounds.  Honestly, I was so raw at that point that I wanted to curl up in a ball and die.  Nate was no longer saying mama.  This was probably one of the key moments that led to me isolating both myself and the boys from peers for awhile.  I couldn't handle having my kids around neurotypical kids.  Obviously my friends and their kids were doing absolutely nothing wrong- in fact they were incredibly supportive- it was the pure normalcy of it that I couldn't handle.  And it was such a different experience than the one I had the first time around.   Jack was a VERY early talker.  The other moms were amazed by him, I was proud, and at times I did have moments of smugness.  The joke was on me.  I have learned just how little my parenting had to do with Jack's speech development.  Not that reading to him didn't have a positive impact, but much of it was just how he was wired.  I never got why other parents were stressing so much about their child's lack of speech.  I figured, it'll come.  Oh man, that just makes me cringe now! 

I didn't think the pain of that would ever get any better.  I felt like I had lost too much, with both of the boys being affected by autism, to ever get to a place where I would be comfortable around our friends again.  Am I there now?  Not really.  But I have realized that I am on that path.  I am slowly able to "expose" (because that's how it feels) Nathan to more "normal" situations.  Was it him I was protecting in the past?  At the time I thought so.  Nope.  He most certainly didn't and doesn't notice other people's reactions to him.  It was for me.  Mommy couldn't handle it.  And you know what?  I think I had a right to that- I had to find my own way through this maze that is our life. But on Sunday, when I was at the farm with the boys and Nate was stimming, I could take a deep breath and accept that it was going to happen, that it was going to continue to happen, and it is ok.  Getting to this point opens up a whole new world to us.  Would I venture to take both boys to the mall by myself?  Ummm, no.  At least not by choice, or for "fun".  There are too many triggers, and they are different for each child- it's like a minefield.  But outdoor activities, small gatherings, playdates; I AM getting to a place where I can handle these as an autism parent.  I can hold my head high while watching my kids do his thing.  I can answer other parents' questions without becoming overtly defensive. 

I will NEVER fully accept my kids' limitations.  I will always be fighting to better their quality of life, to improve their functioning both at home and out in the world.  But I guess I now understand that there is a huge difference between acceptance and feeling defeated.  I can fight for them while appreciating who they are during the process.  Nathan is doing the most awesome thing this week.  Most parents would be absolutely thrilled by it themselves, when their baby is about one.  He has been saying mama again for awhile now, but this week it's like something clicked and he has realized it's my name, that I come when he says it, that it gives him some power.  I have never heard mama said this much...ever.  I love every single second of it.  If he is sitting in his booster eating lunch and he hears the click of my office door opening, he starts in right away, calling to me.  He sometimes comes to the office door when he gets home from school and just stands there saying it until I come out (it's not hard to convince me).  When I walk into his room in the morning to pick him up out of the crib he says my name.  This time last year, I was honestly afraid that I might never hear that word come out of his mouth again.  So now I can find my almost 3 year old saying "mama" completely fulfilling.  I look at the other kids in our social circle that are his age (there are I think 6 within 2 months of each other) and I can find their speech cute again.  I don't resent what I am missing with Nate- or not nearly as much.  My friend's little boy is about to turn 1- I am preparing myself mentally for his speech to surpass Nate's shortly.  It's not nearly as painful as I feared it would be.  As long as we are moving forward in some way, I am ok.  What a huge leap to make in a year!  In terms of empowerment- accepting where we are with Nate gives me the ability to fully reconnect with friends that have kids his age again, and as I mentioned above, it gives me the confidence to take him out with me more.  I can handle it emotionally when he has a sensory meltdown, or runs around with pine needles waving them in front of his face for an hour.  Our whole family has come a long way.  For instance, my mother in law took Jack to get a pumpkin at a farm a few weekends ago.  She brought a small pumpkin back for Nate, but she also brought an extra long weed that she found- perfect for Nate to wave till his little heart was content.  I almost cried, I was so touched.  She too is reaching that point.  My mom is constantly looking for opportunities to have therapeutic one-on-one time with him.  And daddy?  There just aren't words- he has become one of Nate's biggest cheerleaders.  All of the people who love Nate are getting there.  He must feel that right? 

#Aspergers, #Anxiety and the Potty Mouth

Ahhh yes.  Jack is prone to periods of anxiety.  And unfortunately, things seems to fly out of his mouth at these times.  And it's really whenever he is in any way uncomfortable- if we are tickling him and it's gone too far for him, if we are swinging and he's going too high.  All of the sudden a**hole will come flying out of his mouth.  It's not like we haven't corrected him over this or punished him for saying this a million times.  We have.  And I honestly don't think he's doing it to be naughty.  He's changed it to ashhole for the most part, it's hard to punish him for this, although we have made it perfectly clear that this is not ok either.  It's tough when your kid calls you an "ash".  How do you even respond to that?  When he was younger, it used to be idiot.  We told him this was not acceptable, so he shortened it to "idi".  This is legend among our family.  In fact, my coworker's entire family has adopted this term- even her kids who live outside of her home use the term "idi" to describe someone they don't like. 

So is this a punishable offense?  I know that Jack has trouble expressing emotions, and sometimes I feel like this is just him trying to express that something is really bothering him or stressing him out.  He knows these are "big" words and that's why he uses them.  I want him to express himself, just don't want a potty mouth around the house.  I guess it doesn't really matter what I want, since all of the reprimands and punishment in the world don't stop it.  Kids with Aspergers are prone to Tourette's like symptoms, sometimes I think this is part of that.  It's just hard to know how to handle it. 

This morning the four of us ended up in our big bed at about 4:45am, everyone always seems to wake up especially early on the weekends.  John went to get Nate and bring him in when he woke up.  The minute he realized that Jack was in the bed he went ballistic.  He does not want Jack to touch mommy- at all.  So Nate was on one side of me, Jack on the other.  Nate kept swinging his little legs over me to karate kick Jack.  Jack kept telling Nate he was an "ash".  Then of course he would recommence his baby lion persona of the week.  This involves the most annoying high pitched squeak you can imagine.  It is actually very authentic.  This would in turn tick Nate off all over again and the whole cycle would begin again.  Just another relaxing morning at our house....John and I ended up hysterically laughing, because really, what else can we do?  At least they're interacting right?  Ha

"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. 

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!