Nate Has Something to Say

So I think I have mentioned before that delayed speech in autism is not necessarily about an inability to speak, but a lack of understanding of the purpose of speech, of communication in general.  Basically, what's in it for me?  Nate has definitely fallen into this category for a while now.  I used to say to his initial infants and toddlers visiting therapist that I just didn't understand why he wouldn't repeat me.  Well what was saying "duck" gonna do for him?  Not a whole lotta. 

That's why the first stage of speech development is called the own agenda stage.  Basically the child has their own plans and if communicating with you doesn't make them happen then pooh on you.  Many kids with autism stay in this stage a long long time, and Nate was no exception.  The next stage is called the requester stage.  Nate has been in this spot for at least 6 months now.  So the main time he wants to and understands that he needs to communicate is when he wants or needs something.  It all started with a simple little word called "more".  He has gotten more and more assertive with letting us know, from walking over to us and saying more, to grabbing our hand, turning it palm up, and putting his cup in it, to now grabbing our hand, pulling us out of our chairs and to the area where the desired object is.  This is part of why pointing is also such an important precursor to speech as well- it is evidence that the child gets that they need to let the person know what they want or they won't get it.  Pointing gets frustrating after awhile, believe me, my mother in law listened to me say "this? this? this?" for a good 15 minutes the last time she was here for dinner.  After all of that time I finally figured out he wanted a frozen waffle.  Yes, I am a genius, ha.

So what we have been waiting for with baited breath is the early communicator stage.  The point where the child is starting to talk for reasons other than physical needs.  It's coming, I can taste it.  And this morning I got a good sampling.  I always talk to Nate about the bus in the morning, seeing "Mr. Sam" the bus aid and "Miss Robin" his teacher.  This morning as I was talking about it he looked right at me and said "Nate, bus".  Right after I fell out of my chair, I said yes, that's right.  Then he looked at me and said "mama, byebye".  Then he started crying and saying "ma, no bye". 

This is huge.  He also has said "Annie" for the sitter and supposedly "Riley" for our dog- although I missed that one.  I am praying this amazing trend continues....

More Than Words

You are looking at a graduate!  Of the Hanen More Than Words program!  A little refresher on what that is:

http://www.hanen.org/hanen-programs/programs-for-parents/more-than-words-parent-program.aspx

More Than Words^® — The Hanen Program^® for Parents of Children With Autism Spectrum Disorder

As a parent, you know how challenging it can be for your child with Autism Spectrum Disorder to interact meaningfully with others and connect with the world around him.
The More Than Words Program was designed specifically for parents of children ages 5 and under on the autism spectrum. Addressing the unique needs of these children, the program provides parents with the tools, strategies and support they need to help their children reach their full communication potential.
More Than Words does this by empowering you to help your child reach the following three goals:

1. Improved social skills
2. The ability to engage in back-and-forth interactions
3. Improved understanding of language

I have been attending this class I think since early October?  First, there are many people who have had to bend over backwards to help me make this happen- Rhonda my amazing coworker and one of my closest friends, thank you so so much for covering my cases while I took a half day every Friday!  And although she doesn't read I'm pretty sure, I need to thank my boss Val for her flexibility in letting me take my vacation time in a rather nontraditional manner.  And my mama- thank you for getting Jack off of the bus most weeks since I couldn't get home in time- once again you came to the rescue. 

Has Nathan made tremendous progress through this program?  I don't really know how to answer that.  He has made progress, yes, no question.  But I think that while this program definitely helped him, it has helped me even more.  To understand Nathan.  He may not be talking very much at this point but he is definitely communicating!  It's almost like this class has helped me interpret his way of communicating.  And it also helped me to accept where he is, and anticipate what will come next.  I understand more thoroughly now that I NEED to invade Nathan's private world.  He cannot be allowed to stay there- basically I need to get in his face, force him to interact with me.  Because he would be happy playing with a ribbon all day.  So I am figuring out how to pull more out of him.  And that is priceless.

This class has also served as a support system in many ways- parents comparing and sharing their experiences, venting about frustrations and at times sharing sadness.  It has been through this class that I have come to realize that while Nathan's "play" is not "typical", he is not the only child that loves to play with tissues, ribbons, and leaves.  He is not the only child who loves to just run laps...and laps...and laps.  These behaviors are actually pretty darn common in kids on the spectrum.  I think I knew this in theory before the class, but being around other real families having similar experiences has been very helpful.  I hope and pray that I am able to keep in touch with people I really connected with- I am actually not too worried about that.  Think it's a pretty sure thing- we need each other.  Good autism mommy friends are hard to find  :-)

Unspoken Words

 

Nathan and I have an amazing bond.  Of course Jack and I do too, but with Nate it's different.  I feel this tremendous need to protect my little boy, to help him speak and express himself, since he isn't yet capable of doing it for himself.  Think of those first few months of your child's life, when they couldn't speak and you had to rely on expressions, crying, gestures, etc to know what they wanted.  No, we're not in that place anymore, but we certainly lived there for a very long time.  And the language Nate has now remains limited, and his use of it does as well.  So I have found myself in the unique position of continuing the "baby" phase for a very long time- or at least this aspect of it.  There is no one on earth who can read this little boys wants and needs the way I can. There is no one on earth who can fulfil them as well or as quickly as I can.  And Nate is well aware of that.  He comes to me whenever possible, and then to daddy.  It is apparent that he feels no need to communicate with anyone else, except his sitter and teachers when we are not there, and sometimes his grandparents.  What a huge responsibility this is.  On top of interpreting all of this, it is also my job to help him learn how to communicate more effectively.  This is true of all parents, but when you put it in the context of classic autism, it becomes a whole new ball game.  I was working at this very hard before, but now that we are participating in this "more than words" seminar, it's become a third full-time job.  And it is the most difficult of the three by far.

As parents of infants, we take so much of their development for granted, we read the books, we celebrate the milestones, but we never really think that they might not come.  Until it happens.  For instance, last Friday my neighbor and I were walking back from taking the kids to the bus stop, and she said something like, "it's amazing how fast the language starts coming around 9 months" (she has a little guy).  Then she clapped her hand over her mouth.  I just smiled and said that's completely true.  Hey, I watched it with Jack, and Nate.  I know what she's talking about.  I just never thought we would lose all of that progress and now be struggling with this same milestone over and over again. I was talking to Nate's speech pathologist about his words, and I mentioned that it feels like every time he picks up something new, something else drops off.  She said this is extremely common in children with autism.  For instance, the first new word he picked up when we started with the infants and toddlers program last year was ready, set, "go!".  Guess what I spent this weekend working on with him?  And it's harder this time- I could use a car rolling last year, this year I have to lie on my back and do it by lifting him up over my head with my legs on "go".  He needs that incentive.  Every single word we gain needs a similar motivator.  And the consistency has to be well, consistent. 

I am learning many new techniques in the seminar.  And working my tail off on applying them in daily life.  Really it feels like creative cruelty, or professional withholding.  Poor Nate.  But some of it is working.  Every time he wants something, every single time he says more (which he knows used to thrill us by the way- I am sure he's pissed that it doesn't work anymore), it becomes a 5 to 10 minute process of "more what?"  If it's cup or pops, we're golden.  Anything else, we're screwed.  The closest we get to a name is "and that, and that, and that".  Which is a huge improvement, but helpful? Not really.  If it's pretzels, I hold them out of his reach and wait, and wait.  Then after a few minutes of nothing, I approximate the "p" sound, sometimes this gets some repetition, which is great.  If not, then I say the full word.  The point to the bag and say more.......if still nothing then I pick up his hand, physically point his finger to the bag, say pretzel like 50 times, and basically jump up and down like this is the best news ever.  I have no problem with doing this in theory, it's just the whole 10 minutes to get a pretzel to the kid thing that is driving me crazy.  Another technique is working on "choices".  He usually can't verbalize which he wants, the actual goal for him is to see him scanning each item visually and eventually somehow indicating which one he wants.  The scanning thing is huge, kids on the spectrum are in their own world, so observing what is around them is a big step.  He is doing pretty well with this.  Granted, his choices are pretty obvious- I hold up pops, and then maybe a sock.  It's not like he's torn. 

I'm applying these same concepts with books at bedtime, with songs at lullaby time, with parts of toys during playtime, etc.  One other technique is to basically "put words in his mouth" while literally sitting at the same level on the floor as him with our eyes at the same height.  So if I say "time to go night night" and he screams, I say "no night night mommy!"  Help him express himself with words, and also let him know that I understand.  I know these seem like really simple things, but when your child has little desire to communicate, little desire to use words, these interventions are a big step. 

Tomorrow is Nate's first "big boy" IEP meeting.  Blah.  We already have the evaluation, they send it home with the child ahead of time so the parents aren't shocked.  Good thing.  Of course, as always, reading this crap was really comforting- yeah right.  They put my boy's receptive language in the first percentile and his expressive language in the second percentile.  They literally stated that if measured by what age level his understanding is, there has been no progress in his receptive language.  At all.  They put him at 11 months last September, and that is what the Child Find evaluator put him at last month.  I call BULL _ _ _ _!!!!!!  Either he had a bad day when they observed him in class, or they "over" evaluated him the first time.  Because if I had told him "go bye bye" last fall he would have stared at me or more likely at the floor.  Now he either throws himself on the ground in protest or if I say "go bye bye with mommy" he stands up and takes my hand.  And this is true in every aspect of daily life.  He knows and understands SO MUCH MORE than he did at this time last year.  So for the first time, John and I, while still saddened by the numbers, were able to shrug off some of this evaluation.  Because we know our son better than they do.  And they are going to put the worst case scenario in writing in order to get him the best services available.  And that's what I want for him.  So I guess I just have to take it.  And keep working, and working and working. 

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. 

"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. 

Grief, Hope, and Some Really Cool IPhone Apps

OK- how, you ask, can this post be cohesive with such varying topics?  I doubt that I will be- sorry about that.  I am a bit scattered right now.  I have been in crazy organization mode this week- putting together a really strict budget and just trying to get on top of things in general.  I know there are iphone apps for almost everything, but haven't really taken the time to explore very much- can't imagine why, with so much time on my hands.  I'm just gonna throw the ones out there that really impressed me this week-
Cozi- family organization- family calendar, can send automated texts to the hubs to remind him of appts, grocery list, to do list
Allrecipes- has a recipe spinner- you plug in what type of dish (ie main course), main ingredient, and prep time and it throws ideas at you- and compiles a grocery list of the items needed to make them
Goby- lists local events based criteria like date, family friendly, etc, and moves with you- ie, if you change location it senses that and gives you the events for your current location
ShopSavvy- this might be my favorite- it's a barcode scanner- you can scan any item you want to buy and it runs it through the system and tells you what local store or internet seller has the best deal.  you can also type items in, but why would you when scanning is so much stinking fun?

Then I decided to type in autism.  It's a well known fact that there are a ton of apps that are helpful to children with autism- the ipad is a coveted item among most parents who have children with autism.  The iphone is a bit tougher since the screen is small and most of these kids have fine motor issues, but I did find a couple that I will be trying:
Autism Lite- this is for parents- it helps you track supplements, diet, behaviors such as meltdowns, self stimming behavior, sleep, etc.  of course for the full monty you have to pay- the jury is out on that
Autism iHelp- basically ABA cards on the iphone screen- practical objects and such that you can go through with your child where ever you are- you can also opt for a voice over to say the words to the child
AutismApps-  this is hilarious, but helpful.  It's an iphone app outlining all of the autism iphone apps.  but seriously, it reviews them, categorizes them, etc.  very helpful

So as John would say, stand back!  I am on one of my organizational rampages.  Everything will be slow-cooked, coupons will be clipped, comparison shopping will be constant, and lists will be everywhere.  I usually get like this when I am super busy.  There are an overwhelming amount of appointments, etc coming up for the boys.  If I don't get a bit more efficient I will be drowning in a sea of gluten free fish sticks and dirty laundry.  Not that there's anything wrong with that.

Speaking of busy- today was Nate and my first "More Than Words" class.  It was really an orientation for the parents- the kids will, for certain classes, be in childcare with some of the aids that work with them in ABA.  So it wasn't quite as bonding for him and I as I had hoped- but it will be in the future.  I realized while I was there today that I felt a tremendous sense of relief.  At first I couldn't pinpoint the reason for it- was it because I was among other "autism parents"?  No, I go to my TACA meetings, talk to other parents at the boys' OT, etc.  Was it because I am hoping this will really help Nate?  Honestly, no, although I am very optimistic about this.  Then it hit me- these are allparents that are at the same stage of this journey as I am.  Even at TACA, most of the parents have older kids, they are wiser, when I talk to them I feel like I am "behind" or "naive" about the interventions.  Not that they are condescending, they are not at all.  It's just how I feel.  I guess the best example I can give for parents of neurotypical kids is what I experienced when I joined playgroup with Jack.  I went to the organizational meeting and listened as the leader divided the kids in Jack's age group between two groups- first time moms and moms with other children.  At first I was kind of insulted- why was that necessary?  I so get it now.  Now that I have two kids- finding a time to meet would be so much more complicated, playgroup would be an "extra" activity, as opposed to the absolute lifeline it was to me when Jack was a baby.  With our first kids, we all freaked about everything, now we are like, oh reflux, really?  Colic, really?  moving on....If I had been in the playgroup with the second time moms I would have felt overwhelmed and afraid to speak up.  And that's how I feel at TACA quite often. 

If anything, I have been dealing with this longer than most of the parents in this group, because of Jack.  I felt relief because I could see my hope, frustration and grief mirrored in the faces of these other parents.  One of the moms cried multiple times today, just during the introduction.   At first, I felt pretty in control of my emotions, and then they put on a video of testimonials by other parents who have been through the program.   They made sure to include children with varying degrees of autism- several who were verbal, a few who were non-verbal.  I was struck by some of the footage of the parents talking about how grief-stricken they were when their children were diagnosed.  I wanted to scream "yess!!!!!" Thank God they included this.  We ALL needed to hear it, to know that it's normal.  So many friends and family members try to comfort us- but unfortunately, many of the things they say end up making us feel worse, or guilty, or minimize what we are going through.  Things like "it's not fatal".   Ummm, yes, I know that.  I am not worried about my child dying, and I am so so lucky for that.  However, I am worried about his life- what kind of life he will be capable of living.  And that is a very real fear.  I have had people say things like "someone has to work at McDonalds", or "he'll find a skill".  This is NOT comforting.  What parent doesn't want their child to thrive?  Anyway, I digress.  I don't think there were any dry eyes when the video was over.  I have a feeling that this class is going to take on a support group atmosphere as the the parents get to know each other.  This thrills me.  Next week we will be videotaped interacting with our children individually- kind a "pre-course baseline".  They will do this multiple times throughout the course, presumably to show progress.  I am ready to get moving on this- it is quite time consuming, there is extensive "homework", both reading and specific activities with Nate.  Thus the need for extreme organization.  There- see, I tied it together for you, haha.

Moving on- Nate has continued to have a very good week.  He is pointing more purposefully, he has been more verbal.  At one point this week he started saying "hug" and then running into my arms.  Bliss.  But besides expressing himself more, I get the sense that he is understanding more of what we are saying.  "ready to go bye bye?"  He heads for the door.  And, as insulting as it is to the sitter, the minute he sees her, he now bursts into tears. We got back from class today, and when he saw that she was still there he lost it.  It took both of us several minutes to convince him that mommy was staying.  Then he was fine.  We have been reading the "duck and goose" books at bedtime.  He will now point to the "duck" on every page when I say "touch duck".  Now, I am not picky, he can point to either the duck or the goose, and that counts for me.  On one page there are three birds- now when I ask him to touch duck, he individually points to each one of them.  This is huge for him, and shows that he is not doing it randomly- he understands what I am asking.  John and I both feel that major progress is being made- I started him on some digestive enzymes this week too, hoping this will be helpful.  Keep praying for him!!!

Sorry this was kind of all over the place, but it kind of matches my mood this week.  Have a good night and thanks for listening!

It Never Gets Easier

Nope.  I woke up this morning, put on my big girl pants, and headed in to infants and toddlers.  I have been through enough of this in the past year, I can deal with this.  I know what to expect.  True, true, and true.  Doesn't matter.  It's my baby.  Lynne, his case worker, met me at the door with a hug (she is NOT a hugger) and a box of tissues.  These are both negative prognostic indicators.  She and I sat down, just the two of us, to go through his "progress".  I am going to give it to you straight- I will not make you wade through 20 pages of documents before you get the numbers.  When he was 21 months old, Nate's language comprehension was at 8 months of age, his expression was at 9 months of age.  He is now 33 months old.  His comprehension is 14-16 months, his expression is 11-12 months.  At least the comprehension is improved, but the fact that his speech has progressed by about 3 months in a year is just so, so, depressing.  And these two pieces of the puzzle being so severely delayed set him up to be delayed in every other area as well.  Such as gross and fine motor, he is testing at about 21 months.  Much of this is because he can't comprehend what he is supposed to do, or what the person is asking him to do.  I sat through all of these numbers with dry eyes.  I can do this, I can do this.  Then she asked me if I had any thoughts or comments.....I started talking, or trying, and out it came....sob, sob, sob.  It wasn't even just the assessment, it was being back in that room, with Lynne, thinking about how the team told me last year that I wouldn't even recognize Nate a year from then.  God I wish that were true.  Yes, he has made a little progress, but not nearly as much as anyone expected.  Especially in the language and social aspects.  Mommy guilt always kicks in with a vengeance at times like these- what am I doing wrong?  what am I missing?  Am I too lazy and that's why he's not improving?  She told me I am doing an amazing job, that I am a very motivated parent that is exploring all avenues for her child.  I wanted to punch a wall.  Why isn't all of this helping him more?  The diet, the supplements, the therapies, the one on one at home....why??????  Of course no one can answer that one.  After these check-ups I find myself vowing never to turn on the TV again- not for the kids, not for myself.  I vow to drill this child constantly, read to him, do anything developmentally appropriate that I can think of.  This, of course, is not practical- not for us, not for any family.  I just wish I knew what to do.

We discussed the next steps.  Turns out this fall is going to be really intense again.  He basically has to go through this full assessment process again in order to be placed for his 3 year old stint.  Because he will change agencies- from Infants and Toddlers to Child Find.  His class will be larger and longer, but to make up for this, a therapist will be visiting the home 1-2 times a week.  He will likely go to Benfield Elementary School, where they have an ECI program.  But first the assessment- then another IEP meeting. 

After the meeting concluded, all I wanted in the world was to see Nate.  It was about 9:20am, and his class isn't finished until 10:15.  Lynne snuck me into a back corner so that I could observe but Nate couldn't see me.  His teacher, Miss Gina, shuffled me to different hiding spots throughout the hour so that I could observe his drills, play, circle time, art time, and game time.  She went through his book of drills with me to show me his progress.  While all of this was wonderful, and the teacher was extremely accommodating, I feel like this observation period, at least today, was a mistake.  Because Nathan was by far the lowest functioning child in that class.  And one of the oldest.  I feel, once again, like I have been punched in the gut.  Most of the other kids have speech, they participate, they get "in trouble".  Nate just sat there- he followed directions, ie he went where he was told, but other than that it seemed like he just sat there in his own little world.  At one point I was talking to the teacher, and she commented that she knew how frustrating this must be for me.  She stated that she has a niece with autism, who is now 21.  That she has done very well with ABA- she can do simple tasks now, but nothing so complicated as going to the store and buying something.  This story did not make me feel better. 

In case you were wondering, bi*** aid was there today, but was not working with Nate.  I reported the incident from yesterday to Lynne, and was SUPER sweet to the little snot all morning- I prefer to kill with kindness. 

It is so hard to watch your baby struggle so much.  Every time I think about this morning I cry all over again.  Now, so that I don't lose it any further, I am going to force myself to make a list of positives:

1.  Lynne and Gina said that Nathan seems more "open" in the past month- that the fact that he is clapping on command is "huge"
2.  we have the assessment for the more than words program next Friday- maybe that program will help
3.  Nate is not being sent to the program for the 3's that are "severely" disabled, he is going to regular ECI (early childhood intervention) classes.  in and of itself, that is a positive
4.  much of Nathan's progress is not going to be captured by these formalized assessments- they way he responds when he sees someone he knows, the tenacity with which he now demands what he wants, the way he is pointing to the kitchen counter and saying "that" 15 times until I get it right.  there is no way to quantify that
5.  at the end of class today, I snuck out, and switched off with his aid.  She was holding his hand, and they were preparing to walk the kids out to the pick up line.  I just slipped my hand in his and said hello.  He looked up, looked down, looked up, realized it was me, did a little jumping and grinned like a little goof.  Then chattered to me the whole walk out and whole drive home.  When I had to leave him with the sitter he went ape.  He loves his mommy as much as she loves him. 

A New Opportunity for Natey and Mommy

I got a handout in Nate's backpack today.  It's one I have received multiple times and chosen to ignore.  Why?  Because I didn't think that what they were offering was possible for us.  The county has made the investment of sending their infants and toddlers speech pathologists to be certified in the Hanen program.  And they offer it to the families of the children in their ABA program FOR FREE.  The program is called "More Than Words", and it was developed specifically for parents of children on the autism spectrum.  It involves 8 2 1/2 hour group sessions, a pre-program consultation, activities at home, and 3 videotaping sessions where the parent and child are taped while interacting, using the methods taught in the program.  The information in the program deals with improving communication skills. 

http://www.hanen.org/Hanen-Programs/Programs-For-Parents/More-Than-Words-Parent-Program.aspx

The More Than Words Program was designed specifically for parents of children ages 5 and under on the autism spectrum. Addressing the unique needs of these children, the program provides parents with the tools, strategies and support they need to help their children reach their full communication potential.
More Than Words does this by empowering you to help your child reach the following three goals:

1. Improved social skills
2. The ability to engage in back-and-forth interactions
3. Improved understanding of language

The More Than Words Program focuses on your natural, day-to-day life with your child. You’ll learn how to tweak the activities that you’re doing with your child already and turn them into productive and enjoyable learning opportunities.
You’ll discover how to take everyday activities like meal time, story time and bath time and use them to help your child improve his communication and social skills.

Here is a little more information (you know how much I love to provide links :-) )

http://www.hanen.org/Helpful-Info/Research/More-Than-Words-Parent-Research.aspx

Know what this sounds like to me?  It sounds like the portion of the study at Kennedy Krieger that I wanted to participate in, but was not lucky enough to be randomized to.  It sounds like a program that even a month ago, I would have doubted would be beneficial to Nathan.  Because he wasn't "there" enough to participate, to focus.  He is, without question, there now.  The changes in Nathan have been consistent these past few weeks- we have continued and been increasing the speak smooth.  I took Nate to get Jack at the bus like usual today- our neighbors were delighted to see him pointing to the things around him and saying "and that, and that, and that".  He asked for more bread while we were there, and then more cup.  He continues to look at books almost constantly, and he is pointing to more and more things while we read them at night.  Last night he was pointing to the duck throughout one book we were reading.  And he is doing more things like clapping hands when I ask him to.  The jist of it is that he is much more responsive.  His OT said something this week, his sitter, his mimi, and of course daddy and me.  I feel the need to grab onto this change and run with it as fast and hard as I can.  So the handout came at the perfect time.

The obstacles.  Ahhh, yes, those.  The reasons I have never entertained participating in this program in the past.  It takes place on Fridays, about 40 minutes from our house, from 1pm-3:30pm.  For 8 weeks.  This is Nate's naptime, and he is supposed to attend with me.  But I listened to him shout and talk to himself for his whole naptime today.  He can miss his nap.  Done.  Jack- school.  He gets home at 3:50pm and there is no way I will be back in time to meet the bus.  Grammy is going to come meet him on Fridays (love you more than words mom).  Done.  And the biggie- my job.  Take a half day every Friday for 8 weeks?  No way!  Yes way.  My work partner (and dear friend) is completely supportive, I spoke with my supervisor today- supportive but wanting to check with the higher ups.  They said yes.  So.....DONE!  I am ecstatic!  I am so grateful that my company is willing to work with me on this- taking 4 days of vacation time to help my kid is nothing, right?  But Friday afternoons are a precious commodity in the business world.  I am so lucky.  It's not just the attending the program thing, although that is the biggest part of course.  It's getting this one on one time with Nate.  And gaining tools that I can use in our everyday life.  I'm really excited!  Our evaluation is on September 28th.  Our insurance constraints have been such that I have not put Nate in speech therapy.  When I asked his instructors and therapists from school, they felt that he would benefit more from OT at this point, so that is what we have done.  Now I have a way to give him speech too- and I get to be involved.  So psyched!!!!