We’ve Wandered to ABA.

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Wandering and Autism Spectrum Disorders go hand in hand and make for one major safety issue.

When you see us at the playground, you might think I am a ‘helicopter’ parent to some degree.  I never intended to be that way– sure, I am a worry wart, but I believe in capable independent children.  Things change, though, especially when your little dude doesn’t respond to his name, use functional speech, show you things of interest or follow directions in a timely manner.  Safety issues in public places start to arise over and over again… you start to helicopter.

Most children sort of wander in a sort of rubber band pattern, stretching far enough away they turn back to a parent and return.  Our G literally tried to wander into pitch darkness at an evening hayride last Fall.  My husband was loading up the car, and I was in the middle of nursing baby G.  And things like that could happen all the time, but we spend an exorbitant amount of energy on preventing emergencies.

Because he has, as long as I can remember, been able to unlock doors and open them, and with his propensity to wander, even family parties become stressful in ways one might not expect– we spend so much time knowing where he is every minute.  “Are you with him?”  “Can you see him”  “G?  G?!”  We sound paranoid, but he hates crowds, having to engage in conversation, and he has a very poor ability to keep his sensory system regulated.  LEAVING a party quietly and wandering away would be extremely enticing to him.

And now we’re in terrible two-ville, and holy moly this is not fun.  Some of it could be residual adjustment and stress from starting his transition to preschool program… but we hear “No” at every turn, he hits me (he’s so little it doesn’t hurt), he knocks down his baby sister if she so much thinks about moving toward a toy of his preference, he throws things, he has sensory meltdowns, there are issues with self injury… ugh, it’s a mess.  He is truly, truly a sweet kid, and CAN be the best-behaved child in a room, but he is having a rough patch that is getting out of hand.  His communication limitations and very immature socio-emotional level (for his age) make for much frustration; it’s hard to balance his very diverse set of skills in my head (ya know, like he does math, but he cannot follow a direction, and can he not follow because he is having a sensory moment? a behavior problem? a processing problem? a focus problem? confusing).

It is good that he is acting out on one level because he has a sense of self, and that is great in terms of his development, but no matter how consistent I seem to be with discipline and behavior plans… it just isn’t working.

The behavior we’re facing right now makes things like wandering that much more of a concern so we are stepping up our game.  It’s time to make our home safer for him.  It’s time to pursue an intensive Applied Behavior Analysis program.  We’ve loved Floortime, and we are continuing to learn and grow our relationship through play, but we are needing something more.  So off we go down another new road… we’ll see.

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The 2012 Awareness Post

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I am a failed fellow.  As in, I joined the New York City Teaching Fellows program to teach special education, and then I quit.  There is truly a lot that went into my decision to leave the program including a death in the family, depression, and a myriad of other things.  But the thing I remember saying to my husband over and over as I left the program was this:

“It’s not like I don’t want to work with special needs children.  It’s that I love them all too much, and it hurts.  I just can’t handle it as a teacher.  I think I could handle it as their Mom.”

It’s interesting how life’s journey changes and curves as we grow.  I never once thought I would have a child diagnosed with autism.  I remember being pregnant and very briefly thinking about parents with special needs children and thinking, “How do they do it?” as if our child would never be a special needs child.  It wasn’t like I thought we were above it or something–nobody is ‘above’ anything; it just didn’t dawn on me that there was a chance for something in our lives to be so unique.

I look back at when I left the teaching fellowship with a sort of irony because I walked out of that opportunity and attempted to figure some things out with my professional life, and lo and behold, we found ourselves expecting our son.

It’s like I literally left teaching special needs to raise special needs.  Is it a coincidence?  Sometimes I think not.  And I think that if there is some sort of plan out there for me, and this is what I am supposed to do, then I am okay with it.  My son– and my daughter– have filled my heart with such tremendous joy, and so many amazing adventures await us.

I’m writing about all of this because of Autism Awareness Month.  I’m writing this because I think many of the people who read this blog might not even have children yet, and I want you to be aware… you could someday be a special needs parent, maybe an autism parent.  And you can be awesome at it.

 

From 1 in 150 to 1 in 88…

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The CDC released new statistics on the prevelance of autism in the United States today with a significant increase in the rate.  From 1 in 150 to 1 in 88 (as high as 1 in 54 males).  Many dispute why this rise in autism diagnosis is happening; some say more people are getting diagnosed and seeking medical attention because of awareness or because the spectrum has been ‘widened’ (as in kids who would not have gotten an ASD diagnosis in the past now are).  

What I know is that our family struggles daily, sometimes hourly, sometimes by the minute, because of autism.  Our son does not have a label because it is easy or trendy.  It’s not dramatics or raw sentiments to emphasize how truly difficult it is to raise a child with autism, and it’s not ridiculous to cite how truly difficult simple life experiences can be for my son.  

We struggle, and we do not know why we do.  We have no idea why autism has struck our family, whether it is in our genetics or in the environment or something during pregnancy or birth or something he consumed or experienced or something else.  We try to guess, we try to alleviate, we try to be safer in whatever terms we can with out daughter, we try to solve challenges with therapy… we try and try and we make progress little by little.  But there needs to be more research because more and more people are being afflicted by autism, whether that means a person is experiencing autism or caring for someone with autism.

Some people perpetuate the argument that autism is simply neurodiversity, that it is something to be celebrated and enjoyed and respected.  I celebrate my son.  I enjoy him to no end.  I respect him and his needs.  I do not celebrate and enjoy autism.  Autism gets in the way of his ability to enjoy many life experiences, his ability to communicate his needs, his wants… his dreams.  He is pained by experiences and endures sensory problems that prohibit his abiltiies in multiple areas of functioning.  It makes him no less lovable than if he did not have autism, but the fact is, we have seen him regress, and we have seen him on good days and bad.  There’s something that autism does to a person and does do to my son… to me, it’s almost a verb…  I think my son thinks uniquely; he is exceptionally bright at just two years of age, but the fact is that my husband and I also come from a line of very intelligent people… I’m not even close to thinking that autism is the blessing that has given him all of his intellectual talents and gifts or his unique way of being.  

And he’s not just a quirky little nerd with a label.  Autism does truly explain his difficulties, whereas the phrase “awkwardly smart” does not.  People like my son and families like us need help.  We need research.  We need to know there is hope for the next generation of parents and children that they might be able to better understand, serve and even cure– yes, even cure (and no, not in some weird, nonproven and dangerous way)– autism.  

That’s how I feel right now.  It could change in the future, but at this moment, this is where we are reacting to these numbers.

http://www.cdc.gov/Features/CountingAutism/

http://www.autismspeaks.org/blog/2012/03/29/1-88-we-need-strategy

The Car Grab Game and Other Things

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My son loves cars and trucks so much, and he has become quite the specialist in them.  He knows a forklift from an excavator and readily shouts “tanker truck!” when he sees one park in front of a house along our road.  It’s nice that he has these preferences when the obsessions wane so that they don’t dominate his every thought because it gives me and his therapists a great way of pulling him into activities that push him.

 

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The Car Grab Game is just that type of activity.  He works on his visual spatial skills and low tone all in one little game!  He has to sit on his stool (lovingly painted and given to him by one of his aunts) and follow my directions to reach over and grab vehicles based on what I say… “Car Grab PURPLE.” or “Car Grab BIGGEST.”  It’s actually sort of great how this little game makes him apply his cognitive skills in a physical way while also pushing him to differentiate colors/sizes/shapes/etc. based on listening to directions.  He does very well at this game, and the bending exercises are helping him build the tone he needs to pull up his pants; this is a priority right now because he is almost completely potty trained during the day (very few accidents if any, but we still use training pants when we go in the car) and starting his transition to preschool program in April… kiddo needs to pull up his pants!

Games that challenge my son with cognitive and sensory skills are really great for him because they challenge him in his very ambiguous ‘trouble spots.’  Kids with sensory and spectrum issues often are in some ways gifted in the visual spatial arena, specifically puzzles– my son is no exception to that as he now completes 12-15 piece jigsaw puzzles with very little assistance if at all at 28 months of age.  However, the same kids often have trouble with visual spatial in new places or when picking out information from a scene in real life when multiple sensory systems are trying to interpret and process information– it’s sometimes very difficult for my son who absolutely knows all of his colors from grey to pink to pick out a green crayon if reaching into a big tub of them.  It’s sort of confusing because your child can look like they have cognitive deficits if assessed one way, but he or she will look exceptionally gifted if assessed in another way, and performance often depends on much more than just the type of activity done.  How loud is the fan in the background?  Is the sun too bright?  Are his socks twisted?  etc. etc. etc.

So the Car Grab Game is a golden activity here in our house, and I think most eager-minded little men would like this game.  And obviously, this game is easily adaptable to any kid’s preferences and challenges.  Enjoy!

“A little angel is singing.”

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My daughter loves “The Flower Duet” from Lakme so I play it often during afternoons, especially in that it’s-almost-naptime-cranky time.

In any case, I just played it, and my son looked at me with a smile and said, “A little angel is singing.”

His first true pragmatic speech of the day.

No, sweet boy, a little angel is talking, and that angel is you.

Under the Sea Sensory Bin

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Sensory bins are great for all kids and all ages.  They offer the opportunity to explore and experience textures, sounds, sights, sometimes even tastes, etc. etc. etc.  I keep this container of lentils to make different sensory bins and offer them to my son when he seems like he needs some stimulation.  This one features some instruments (you may see some members of the the Melissa & Doug Under the Sea Symphony) and some magnetic fish with magnetic rod.  My sister and her fiance gave my son that as part of his birthday gift, and he is just now starting to use his little fingers to twist the reel– it makes the sensory bin that much more of a great tool for little ones if you pull some sort of motor skill into it, and fine motor was my choice of the day.

For the kid affected by visual sensory issues as my son is, this is a great tool for talking about and differentiating colors– and then actually going fishing.  Our OT used this with him, and they buried the fish and then had to find them– great tactile stimulation and discrimination activity.

Of course, it is hard to keep my guy organized during an activity like this, but all two-year-olds can be a little wily regardless.  Hope this spurs your imaginations!

Riding Up Ramps On Trucks.

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My son has low tone in his trunk, and his sensory issues make it hard for him to keep his balance the way many people can.  To combat these issues, he has been recommended for physical therapy, which of course, we have been waiting for almost one month for the services to start.  We will probably have a “No Provider Available” issued soon, which we will have to then do this through our private insurance and be reimbursed OR fight like crazy just enough to make people rearrange things and get him a service provider.  The first option is not a huge issue… but some insurances have limits on total amounts of a type of therapy based on diagnosis, and we worry that there may be a limit for physical therapy due to autism in our plan.  We have not been able to get a clear answer on that just yet.

In the meantime, our little dude has been riding on his truck (you know the little riding toys kids move by pushing on the ground with their legs) up the ramp to our back door to improve his core strength, leg coordination, etc. etc. etc.  He HATES it.  And it’s starting to kill me to watch him struggle and hate things so much.  I’m finding myself feeling just as frustrated as him.

But I then remind myself that we have ridden up ramps before and continue to ride up ramps… in whatever metaphorical sense you want to put it–

We had to fight to get our occupational therapy.  We had to fight for the appropriate increase in services after his official diagnosis.  And then we fought for a sort of “social program via structure preschool” and were told none existed.  And lo and behold, someone in EIS (we have not been told who) ‘found’ their grant to send kids (those who show the deficits in social-emotional, etc. skills to need it)to a sort of pre-preschool setting two mornings per week in order to prepare for inclusion preschool at age 3.

My thoughts:

1- How awesome is NJ for having this program?

2- How disturbing is it that this program was such a secret that our service provider told us “no such child in NJ attends such a program?”

And that’s the other thing we are preparing for… the ‘ramp’ of our guy starting his preschool program to prepare him for inclusion preschool.  We visited last Monday, and we were surprised by how much we liked it there.  Our son will be in a small classroom setting with about five other classmates who may or may not be there for early intervention.  On the day we visited, the kids were all there for typical preschool; the kids in the class attending for that purpose are a bit older (almost or already three), and they rotate out to a larger classroom of kids the same age on a regular basis.  The larger class and smaller class combine, and our son will have the chance to join the big group just as his classmates will.  He will have an evaluation with the program to see if he will need an aid… while our son does great 1:1 with his therapists, he seemed to be very challenged by the structure and directions of the teacher and the larger group, though he was happy to be there and smiled at other kids.

I think our son will be assigned a 1:1 aid, but I can’t be sure, and I think at this point, it can only help him.  Our son is such a mixed bag of strengths and challenges that it might truly help him to have someone help keep him regulated, keep him communicating, keep him attending.  He has cognitive, academic and imaginative skills well above his age level, but they are hard to see when he is having a hard time.

He’ll start at the end of April as he turns 30 months old, and he will lose his current D.I. teacher to do this program– the program will count as his Developmental Intervention.  We think this is the push he needs to start communicating in a classroom, to make some friends, to learn in a classroom, etc. etc. etc.  It’s going to be very hard for him, and it is most likely going to take some time for him to get used to it.

And for me, my biggest ‘ramp’ in all of this is letting go.  Letting him have therapy when I am not there.  Letting him learn without me.  Letting him go off into a world where he does not speak for himself and let him fall a little while others learn his ways… I know so easily what he wants and needs by just the tone in his wordless whines sometimes… how will he do when someone doesn’t know?  Will he answer questions?  Will he play with other kids?  Will he hurt himself due to stress?  Will he look at the teacher?  Will he come to circle time?  Will he this?  Will he that?  I have to let go… because by letting go he will adjust in his own way to this new world BEFORE he even gets to preschool, and he will have that much more of a chance of staying mainstreamed.

So that’s what we’re doing right now… riding up ramps on trucks.