The Woman's Got Game!

OK, now I have to tell you, when we left Nate's ABA program for the ECI program the 3 year olds graduate to, I was skeptical.  He was one on one with an aid in ABA, and we had Miss Kristen who came out once a month.  And we loved us some Miss Kristen!

So when Miss Gwen knocked on our door for the first time....well, I was having the usual issues with change.  Miss Gwen comes an hour a week on Mondays.  It is almost becoming a spectator sport among those who love Nathan.  My mom comes most Mondays, and we say that it's because we all want to learn Gwen's techniques, but honestly, as my mom said today, it gives us all such hope. 

What this woman can get Nathan to do!!!!!  I mean first of all, she has him sitting in his little cube chair for an HOUR.  And focusing pretty much the whole time.  She does give him some short down periods, but for the most part it's work work work.

When I say work, what I actually mean is "play" for neurotypical kids.  She gets him to play with toys appropriately.  Today it was race cars going down a ramp (not to brag, but I can get him to do this too, lol), doing a 10 piece puzzle, building a block tower repeatedly and not only that but tricking him into wanting to do it so badly that he had to strain and reach to get the blocks- which he did.  They worked on color sorting, they played peekaboo. 

And this is the one that kills me- she got him interested in bubbles.  He has been ho hum about them forever.  In case you didn't know, bubbles are typically one of the most motivating activities for all kids, but especially kids on the spectrum.  Without this tool, it's kinda like what do I use as incentive now?  She was blowing the bubbles one at a time and he was reaching to pop them.  She repeatedly put the bubbles away- he asked for more.  We have been working on a communication technique with Nate- it's so simple that I don't even really understand why it works.  I just know we have been using it at mealtime, and Gwen used it incredibly effectively today.  It is literally a laminated sheet of paper with three dots on it.  The idea is that when Nate wants something, you take his finger and touch each dot I-want-cup.  The goal is to get him touching each dot when he wants something and eventually filling in the words that go along with it.  Well he has "I want" down pat.  We are working on the nouns, he has a few- like cup, pretzel, chip, and if that isn't what he wants he usually gets frustrated and just starts pointing in the direction of the kitchen saying "that".  What a huge improvement this is!  So today with the bubbles, when Gwen started putting them away, he would say "I want", but not be able to fill in "bubbles".  Eventually he started looking at her and pointing to each of the three dots.  He knew that he had to touch ALL THREE.  That "I want" wasn't adequate.  So he substituted the dot for the word, and when he did so, she gave him the bubbles, and repeated over and over "I want bubbles".  The hope is that he will soon replace the dot with the word.  But it's amazing to have him doing that much.  Every little step is just so so huge.  I can't emphasize this enough to parents of neurotypical kids.  I remember how amazed I was when Jack was developing speech (very very very quickly).  I can't express how hard it is to watch your child struggle so much with communication- every time we jump even the smallest hurdle- it feels like I just WON a marathon. 

And you can tell Miss Gwen feels the same about her "students".  She came in today a little teary saying that another client had his/her first meaningful speech in 2 years during their session today.  Can't. even. imagine.  Miss Gwen does have one magical tool- the cube seat with a desk contraption that goes across it.  Basically Nate is a captive audience.  Starting to think I need to get me one of those!  Of course, I'm pretty sure the desk isn't magical, Gwen is just amazing.

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. 

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. 

#Autism is not Contagious- Come Closer Please!

It's the oddest thing.  I will be out with the boys somewhere and Nate will start stimming.  Some people smile at him, but others back away, clearly uncomfortable with this atypical behavior.  For the longest time his stimming didn't seem that out of place- he was still a baby- lots of babies do the whole total body stiffening thing- it's a sign that their neurological system is not fully mature.  But he is too old to brush it off as that anymore.  He is different- and it is obvious- from the monotonous sounds to the jerky movements, to the lack of speech. My little boy is different.  And even to the casual observer it is obvious.

 

This is also the case with Jack, although not to the same extent.  With Jack it's more like people are overwhelmed- he goes up to everyone (and I do mean everyone) and does his Wall-E impression or tells them about his 15 to 20 pet hermit crabs in great detail.  Note:  he does not have any pet hermit crabs, not one.  The usual chain of events goes like this:  Jack approaches person (almost always an adult), Jack starts talking, the adult acts interested for a minute, the adult realizes he is not going to stop talking.  An annoyed look replaces the previously open expression on their face, sometimes they even walk away.  I was given some cards by the receptionist at the boys' OT awhile back- I think they are from TACA.  They are called, "my child has autism" cards.  Here's the link:

http://www.tacanow.org/store/My-Child-Has-Autism-Cards-100/

I have never handed one out.  I have a hard time drawing even further attention to the boys.  I have been letting Jack go a bit more lately- he is starting to "get" it a bit more- social behavior I mean.  But when he is in a stressful or new situation he has a tendency to revert back to his old behaviors.  Which he did yesterday, when we took him to a fall festival at a farm.  Look who he had painted on his face.  Who did he show it to?  Describe it to?  Every single person he encountered, and some that he sought out.  Many people are very kind about it, some find him adorable.  Then the others....

I want to be clear.  Jack did a GREAT job at the farm yesterday.  He went on a tractor ride, he jumped on a trampoline, he played inside some playground tractors.  As always, reactions are just a bit more intense with him- if he likes something, it's LOVE, if he doesn't want to do something it is a meltdown.  There is very little gray area with him. 

I have definitely developed a thicker skin with respect to the boys and perceived reactions to them.  Even so, I am a very sensitive person.  I feel people's looks, I can sense those stares, the reactions.  It makes me feel incredibly protective of both boys.  Nathan sat for as long as we would let him yesterday playing with straw (waving it in front of his face).  I saw a few looks.  Yes some people noticed his odd behavior.   Probably way fewer people than what I think.  It's not like everyone is sitting there staring at my kid.  That's just how it feels :)

Confession time.  I used to be one of "those people".  I avoided kids that had disabilities- I never wanted to seem like I was staring, I felt awkward.  I am here to tell you that as a parent of special needs children, I would love for you to talk to my boys, to treat them like the wonderful little people that they are.  It's difficult I know- you don't want to say the wrong thing, you don't know what kind of interaction they are capable of.  So what?  Give it a try.  I don't want to have to hand out those cards.  I don't want to have to explain myself, or my children to anyone.  I want them to be accepted. And let's face it- according to the new research, it's 1 in 88 children that are affected by autism.  Until more effective treatments are found, or preventitive measures are taken (which would mean actually acknowledging the problems- not likely), this is not going away.  So try doing what I am learning to do- embrace it.  Don't push it away, don't turn away, don't make faces or act offended or annoyed.  Don't pretend you don't see either, I know better.  Ask me questions, ask my child questions.  I can't guarantee that they will answer, in fact, it's much more likely that they won't.  But I believe they hear everything, that they absorb and observe way more than they get credit for.  And the more that they see people trying to communicate with them, the more likely they are to try to reciprocate, right?  So come closer, talk to them, you might be surprised. 

Attention and Asperger's

Jack has been in kindergarten for almost two months.  I talked about my worries to some extent a few weeks ago in http://jackandnatesmom.blogspot.com/2012/10/feeling-like-crappy-mommy.html.  I want to touch on this further as it is becoming more of an issue.  I emailed Jack's teacher the same night I wrote this post, I hadn't heard a peep from her, and I was concerned.  Her response read something like- Jack's attention is quite an issue, myself, the OT, and the special educator are all concerned.  She stated that she is worried that Jack is going to start to lag behind- that she has to constantly move him from circle time because he cannot focus and cannot keep his hands to himself.  She agreed that he is by no means low academically, but said that she can rarely get an answer from him because he is so distracted.  He scores in her "middle level group" but cannot do the written work on his own- she feels that this is mostly due to attention and not his fine motor delays.  Then she called him a sweetheart. 

I knew this was what I was going to hear.  I was praying he had miraculously not been having issues, but I knew better.  It is the ultimate contradiction in terms.  Jack is so hyperfocused on some topics, like his airplanes, robots, hermit crabs, but cannot focus on tasks and cannot sit still to save his life.  I have done my research, and I know that it is very common for a child with Asperger's to also have characteristics of and often be diagnosed with ADHD.  I never wanted to label my child in this manner.  I feel like the diagnosis of ADHD is overused- I will admit that I often thought it was the way parents excused their "difficult children".  God has this experience brought me back down to earth.  There are some instances where I am correct.  And I do still believe that the diagnosis is overused.  But look at Jack.  He has many many difficult behaviors, yes.  Would I love to have a calmer child who doesn't constantly overwhelm me?  Of course.  That is not what is motivating me to seek some type of further intervention for Jack.  I am scared for him- I am so so proud of what a brilliant little boy he is.  He used to astound people at age two by identifying all of his letters and numbers, and naming a plethora of world war II fighter planes.  I have learned so much about bees, hermit crabs, orcas, etc from him.  And much as his fixations drive me a bit nuts, I wouldn't want him to be different- he's my little boy. 

I don't want him to fall behind when he has no reason to.  It would be one thing if he were challenged academically and needed to move at a slower pace for that reason.  But anyone who has ever met my son knows that this is NOT the case.  When he is listening, really listening, look out!  It goes back to what I was talking about with Nate the other day- not only does Jack learn, and thus far keep up with (if not surpass) his peers, but he does it through that "noise"- his sensory distractions, his fixations, his anxiety.  I can't help but imagine what he might be capable of if he wasn't constantly dealing with all of that. 

So I emailed his pediatrician, I forwarded the correspondence with the teacher to her.  She was not the least bit surprised- she may have a heavy patient load, but she has always treated the boys with a great deal of individual attention, has always emailed or called me back on the same day that I reach out to her.  And I feel like she has made the effort to "know" my children in a way that no other pediatrician we had ever did.  Such a huge comfort during this first uncertain and anxiety provoking year.  We are going in this Saturday to sit down and have a consultation with her.  All of us.  I am nervous.  I have a feeling I know what she is going to say- what she is going to suggest.  Meds.  This is a whole other can of worms that I was not ready to open- although I knew that it would come up sooner or later.

It is true when they say that parents know their kids better than anyone else.  I mean, ask my mommy friends, I had Jack "diagnosed" with, what did I call it?  Infantile OCD?  at age 14 months.  I KNEW.  And when I watch him sit and try to complete a task, I can tell that he is struggling really hard to focus. That it's almost painful for him.  Other family and friends, and even doting therapists of his have tried to chalk it up to his fine motor delay but that is not what this is.  I have the benefit of bouncing things off of our in-home daycare provider.  She is older and wiser, and was a teacher for many years.  AND she has worked extensively with Jack on tasks and fine motor activities. She has seen what I have, and experienced the frustration of a little boy held back by his own busy mind.  So I talked to her about this for awhile today- she talked about something I hadn't considered.  What this must do, or will do, to Jack socially.  Now I know that kids with Asperger's are supposedly not as cognizant of their peers, yada yada, and Jack may not yet notice when kids are annoyed at him or making fun of him, but he loves other people and wants to be around them in a way that I am very proud of.  I don't want to discourage this at all- I want to push him toward this.  I love the fact that he came home today and announced that his 3 best friends, Liam, Sean and Dakota had all died long ago and were now long-bone fossils.  A little morose yes, but awesome.  His inability to attend in school may not be effecting this too much yet, but it will.  It will affect all aspects of his life.  I want him to be happy.  So we are left with yet another tough decision.  Am I going to medicate my 5 year old?  I don't know.  I am opposed to it.  However, I am also opposed to making my child's life more difficult than it has to be, and I am also opposed to withholding something that might improve his quality of life greatly because of my own preconceived notions.  So I am going to go into the office and talk to the pediatrician armed with my research and with an open mind. 

A Tear-Free Evaluation for Natey

Look at this face! 

My little boy did a great job this morning!  John and I took him in to his school to meet with the team who will be taking over his education when he turns three, basically next month.  He will move from the Infants and Toddlers program to the Child Find program, and they require their own evaluation.  So even though he was just evaluated about a month ago, it was time to go through it again.  Except today was fantastic.  In the room were myself, John, Nate, Lynn (his caseworker for the past year) and two educators from the Child Find Program.  Right off the bat they saw Nate freak out and try to climb on a chair to reach his snack (excellent communication, right?)  We had a ton of paperwork to go through and sign as usual (I already have a full file cabinet for the boys' paperwork), and then a developmental assessment.

The team was very good at working the evaluation into regular activities, making a very smooth transition for Nate.  They used his interactions with mom and dad, and used his "pops" as rewards, and objects that he was to "find" as well.  This was highly motivating for him.  He was also in a pretty cooperative mood- he did new puzzles, he stacked blocks.  They brought out a book to see how well he would attend to it, and it just happened to be Goodnight Moon- so he pointed to the red balloon, pointed to each of the three bears, etc.  I was beaming with pride and cheering from across the room.  I bet that was a bit distracting, oops.  It was spontaneous, couldn't even help myself. 

He said go, come, byebye, pops, more, cup, pointed at things, even rolled his eyes when Lynn annoyed him (swear to God).  He was flat out charming.

The thing that amazes me the most about kids like Nate?  That he is absorbing all of this and reacting to his environment through such "noise".  I don't know how else to describe it.  In between tasks, he is stimming, moving in a very jerky manner, staring into space, completely not there.  How does he bring himself back over and over again and then even remember what he's doing?  Can you imagine how hard that must be?  Think about it like being on narcotics....drifting in and out and trying to have a cohesive conversation.  Any progress that he has made (which really is a lot) has been in the face of these challenges. 

Speaking of progress....we were in the same room for Nate's evaluation today that we sat in for his initial infants and toddlers evaluation last year.  What a difference!  First and foremost- I was not alone- Thank You John- that means the world to me.  I had my wits about me, I was mentally prepared- really over prepared.  I was expecting worse.  And Nate, of course, was on his game- compared to last year....well honestly there is no comparison.  It was in this context that I could finally recognize that.  There HAS been progress.  He IS a different child.  Maybe not quite as advanced as we had hoped, we were definitely expecting more speech, but he attends at a whole different level, his eye contact is much better, and he communicates his needs.  It goes back to when they put his cup in my diaper bag last year where he could see it, but not reach it.  He tried to grab it a few times, and then walked away and gave up.  Meanwhile today he's climbing on furniture saying "come...more cup, come".  WOW

We have our first official "IEP meeting" for Nate on November 12th.  That is the day that they will review the deficits they identified today, his placement, etc.  They were talking about the goal being mainstream kindergarten eventually.  I think this is a very very lofty goal, but it comforts me to know that they are thinking this might be a possibility.  I didn't think it would be.  I am expecting to be told basically the same things I was told last month- I am preparing myself for this.  As the parent of a special needs child, I have to find a way to reframe these assessments for my own sanity.  Every little bit of progress is a huge victory- there has not been further regression.  This is an amazing group of educators; Nate has them, his private services, and two parents who would move heaven and earth for him.  We go back to Dr. Brenner on October 30th.  I am sure he will have more medical interventions to try.  We have to keep on plugging away on all of these fronts- and praying.  Please everyone keep praying for this sweet boy!

Today is a GOOD day

"You Made My Day"

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

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

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

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

Progress is Progress

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

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

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

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

Getting His Point Across

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

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

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!

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. 

Listening...

We are all guilty of it....we zone out, we think about what we are going to say next, we ignore....I know my mom, dad, and husband's tone of voice when they have turned off and I am talking to a wall.  My phone at work often acts up, there are times when a patient can't hear my voice, and I have had people continue talking to me for up to 15 minutes without realizing that I haven't said a word in a really LONG time....hilarious.  I have watched  therapists we have seen  zone out....helloooo?  ya there?  Listening is one of my biggest concerns with my boys.

I know, I know, EVERY parent with young kids feels like their kids don't listen to them, don't answer them, don't obey them.  But as I have said in the past, I have called Nate's name 35 times and had him never turn his head.  I can ask Jack to do something 15 times and get the same result.  This is not all the time....they both have more attentive moments and times when they seem to be "gone".  I don't know that this is really about listening so much is it is about lack of joint attention.  Well ok, it's probably about both.

http://autism.about.com/od/SymptomsofAutism/f/What-Is-Lack-Of-Joint-Attention-In-Autism.htm

Question: What Is Lack of Joint Attention in Autism?

If you have a child with autism, you may have heard therapists tell you that your child needs to work on something called "joint attention." What is joint attention, and why is it important?

Answer: When you and your child are reading a book together, you are paying "joint attention" to the pictures. When you are reading the book and your child is playing with his fingers, wandering around the room or noticing a bird flying by the window, you may be reading to your child, but your child is not engaging with you. It can be very tough to develop joint attention skills in a child with autism, but of course the ability to attend to a conversation or activity along with another person is absolutely critical. Why is it often hard for kids with autism to build joint attention skills?
Unlike typically developing children (or even children with related disorders such as ADHD), children with autism are often more interested in and engaged by their own thoughts and sensations than by other people or even the outside world. As is implied in the word "aut"ism (meaning "self-ism"), people on the spectrum tend to focus inward rather than outward. While that's not necessarily a problem some of the time, it can limit children's ability to learn through imitation, develop play and social skills, and attend in a learning situation such as a classroom.
Quite a few therapeutic techniques specifically help kids with autism work on joint attention skills; all of them begin with the idea that true joint attention only occurs when both parties actively WANT to pay attention to the same thing. Applied Behavior Therapy (ABA) has been used successfully to build joint attention skills, but developmental and play therapies including Relationship Development Intervention (RDI) and Floortime may be even more effective. While there isn't a lot of research to compare the outcomes of behavioral versus developmental therapy in treating lack of join attention skills, parents will certainly have a lot more fun working with their children through play!
If you're working on building joint attention with a very young child, it's important to figure out, first, what's likely to engage them. Many children with autism respond well to gentle tickles, chase games, bubble popping, and other fun, sensory-friendly, open-ended activities. These can serve as a terrific gateway to back-and-forth play, shared activities such as building with blocks, and much more.


So this is something we have been working on with the boys for a LONG time.  Can I say that it is working?  Not really sure.  For both boys, environment is so key.  If we want to engage either of the boys in an activity there can be NO distractions.  This can be very difficult, because there are constant distractions for these guys in almost any situation- #1?  Their brother.  But on top of that, auditory sensitivity can really contribute to the problem.  There is a belief that kids on the spectrum have a very difficult time, how can I put it, prioritizing sounds.  So, because they are sensitive to sound, a mere ceiling fan going in the room can be enough to keep the boys from completing a project, or responding to a request or question.  So forget trying to engage them at all if the TV is on.  It is also one of the many reasons we avoid busy places.  Not only do the boys get overwhelmed by all of the stimuli very quickly, but they are very unlikely to obey requests such as "stay with me" or "don't touch that".  One of the hardest things for me to remember at times like these is that neither of them are trying or intending to be "naughty".  This is something that they struggle with because of the condition they have.  So frustrated though I may be, will punishment or yelling really help the situation?  Not likely.  More likely, yelling will just escalate the problem by overwhelming them further.  Am I guilty of doing it anyway?  Absolutely.  But every once in awhile I need to step back and remind myself of reality.  Jack and Nate's OT has suggested something called therapeutic listening.  At first I felt like saying, I don't think talk therapy is going to help my nonverbal toddler, but they gave me a handout and now I get it.  This therapy involves listening to recordings on headphones for about 30 minutes several times a day.  The aim of this therapy is to help autistic kids, with underdeveloped nervous systems, differentiate the human voice from other noises in their environment.  See another parent's experiences below.  

Read more: http://www.autismsupportnetwork.com/news/our-experience-therapeutic-listening-autism-therapy-78736273#ixzz21J0Aqj3m

So this is yet another avenue I am exploring.  It will probably cost us about $250 to get up and running, but really, if both boys ending up needing it, it's likely a good investment.

This is on my mind because kindergarten is on my mind big time.  I am not worried about Nate's school situation right now- those educators deal solely with kids like Nathan, and he is one-on-one daily literally working on joint attention and imitation most of the time.  But Mr. Jack is about to enter the fray of public school to the fullest extent.  Full day, mainstream kindergarten.  15-20 other kids shifting, mumbling, asking questions, answering questions.....hundreds of distractions, many transitions and the longest day he has ever had.  I am so worried about his ability to attend in this situation.  Even last year, in pre-K, the program catered to kids with special needs and the special educator and OT were very involved in the day to day activities.  There is no room for that this coming year.  I keep thinking of full day school as such a good thing for our family, but I am thinking of our daycare needs when this comes to mind, not Jack.  Neurotypical kids are expected to perform at a much higher level today than any of their parents had to at the same age, but it feels so wrong that my little boy with challenges like his is also expected to do the same. We could send him to private pre-K for another year, and we have considered this, but the bottom line is that I am not sure that it will make a difference.  He is going to face the same challenges and distractions for the rest of his life, and I am not sure it will matter if he starts this year or next.  It's going to be tough.  

 I just know that I am going to be holding my breath every day for a long time waiting for a call like "ma'am you need to come pick him up, what were you thinking sending him here".  Of course I waited for a similar call last year too and the only one I ever got involved him scraping his knee on the playground and an obligatory call from the school nurse informing me of the "incident".  I don't think the school nurse had to call for every bump when we were kids did they?  Figures....isn't there like 1 nurse for three schools now as opposed to 1 at each school when we were kids?  So of course we would expect them to do MORE.  It's the culture of our country and lawsuit happy society. OK, off my soapbox now.  Feeling a little bitter that my work calls are now recorded.  Luckily I work with a great team, and when we called in to our daily conference call last week, one of my coworkers inadvertently started singing In-A-Gadda-Da-Vida just entertain anyone who might be listening.  Ahhhh.....it's so nice to feel like a professional.  


So anyway, as always I am a nervous wreck, haha.  One advantage of watching the boys battle with joint attention and listening?  I am becoming a much better listener.  I have been catching myself thinking of other things, or what I want to say when someone is talking to me and correcting.  Really making the effort to listen.  If you haven't done this lately, try it.  It's actually very relaxing.  Even if it's all about propellers and BF-109's.