Fall Update: lots of good stuff

It’s time for a happy post since my last one was a little sad and pissed off.  There is also tons to be happy about!  R is really growing and developing and it is so incredible to see.  Remember that little, awkward wave around his hip I saw him do for the first time in my last post?  Well he has continued to work on learning it with his school staff and he is rocking it these days!  Watch here!  

It’s beautiful fall here in New England.  Last year we went apple picking at a gorgeous farm in CT with family.  R was having a hard time with the unfamiliar environment.  He cried a lot at first, for an hour or so, but eventually settled down as long as I kept him in the carrier against my body.  At the very end he finally felt secure enough to get down and did run around for a few minutes before we left.  This year, in contrast, he didn’t cry at all.  Not a single tear.  And he did not need to be carried or comforted.  He fell in love with a 200 lb jumbo pumpkin, which he ran back to at every opportunity.  We finally snuck him away from it to the rows of apple trees, where he sprinted up and down and across the rows and threw himself into patches of long grass similar to how a kid jumps into a leaf pile.  He was all smiles and had a great time.



We also had R’s annual IEP meeting to review his current IEP and write up an updated one for this year.  We knew most of it would stay the same, with minor goal adjustments, but there was one significant change we wanted to make, and that was to request a 5th day of school for R.  Our school district’s special education preschool program is a 4-day program, Tuesday-Friday.  However, based on R’s high level of need, slow rate of progress, and pattern of regressions we and our consulting clinical neruopsych felt he belonged in a 5 day program.  The other issue was that the four day preschool program involved an integrated (half special needs kids, half typically developing) classroom.  However, R is not even in that classroom due to his higher needs.  Instead, he attends the substantially separate intensive needs classroom, which is for children with intensive needs from preschool – 1st grade, and, due to including older students, operates 5 days a week.  So his own classroom would already be open and staffed on that 5th day (Mondays) and we felt there was no reasonable excuse for not giving him the 5th day of services.  We sent a written request detailing our reasoning 2 weeks before the IEP meeting.  A few days before the meeting my son’s teacher told me, off the record, that when the district asked her and my son’s ABA supervisor about the request they had both strongly advocated for it and stated they believed he needed it.  This is not the first time my son’s teacher has advocated for him with the district, and it really warmed my heart.  It can be tricky position for teachers to be in, and many prefer not to entangle themselves.  The fact that she speaks up for my son means the world.  On the day of the meeting we nervously awaited the district’s decision.  I thought they would want a round table discussion of it, and that we’d have to defend our reasoning.  But instead, the district chairperson just told us that when the team discussed it they were overwhelmingly in favor of it and so we were going to receive the 5th day for him.  It was done!  No argument, no fighting the district.  Our district has been pretty incredible from the start, but I also think we really owe his team for speaking up on our behalf about what’s best for R.



So R is now a 5-day student!  We are seeing so many wonderful things as he learns at school.  His teacher sends a lot of videos and pictures of R working at school like some of the ones below.  R is learning to hold a glue stick, and to smear it with hand over hand help.  He is learning to scribble with a chunky crayon or marker with prompting and hand positioning.  He can now stack 3 blocks independently, use a shape sorter, place a single inset puzzle piece, wave in response to a prompt (with model), and use about 8-10 different PECS cards.  With many of the new things he is learning he gets this adorable goofy grin on his face because he knows he is doing it.


Some of the toy skills have carried over to home and become new preferred activities now that he knows how to do them.  He gets a lot of hand over hand help to complete artwork activities at school, but we hang each one up on the wall and he loves them.  He stares at them while he eats (they are in the kitchen), and he will go stand on a chair and touch and bang on them with a big grin on his face.

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touching his artwork

R has also learned how to have a tantrum.  He previously had never tantrumed in his life.  He had sensory and anxiety based meltdowns, plenty of them, but he had never deliberately thrown a tantrum until just a few weeks ago.  On the one hand we were excited to see him take this developmental leap.  It means he has realized that his parents can control certain things and that he can affect our behavior with his own, or simply express his anger that we are not giving him what he wants.  I think in the past he did not realize we had the power to give or withhold.  If a preferred snack was not offered to him, it simply didn’t exist and that was sad but it was no one’s fault.  Now he seems to have realized that actually if he doesn’t receive it, it is because mom and dad have not given it to him, even though we could, and it’s our fault and it’s not fair!  The development is awesome.  Dealing with the resulting tantrums not so much!  

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Good Stuff

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Happy kid.

Sometimes I worry that I do (or will) write too many posts about negative things.  It can be very therapeutic to process difficult situations and emotions by writing them out, so I often get the urge to write during times of stress.  When good stuff is going on, I feel a lot less urgency to write about  it.  I’m busy enjoying it, and am more apt to share it verbally with others, or on Facebook.  Whereas when I am dealing with the negative side of things, I am often uncomfortable discussing it with family and friends.  I hope for this blog to be more balanced, and include the good stuff along with the hard stuff.

So here’s some good stuff.

Holidays.  My little guy did amazing over the holidays.  We had family visiting for two nights.  In total there were 7 people staying with us from out of town.  In years past we always spent Christmas with my parents, and my brothers would come out too.  Because R’s anxiety is such that it is not feasible for us to stay overnight at my parents’, everyone decided to come to us this year.  I was a little nervous about how R would do with so many people in his space.  He was a rock star.  When he needed a break he retreated to either his spinning chair, or doing his circuit across our kitchen counters.  Several times he allowed his grandparents and uncles to play with him by him tickling him and picking him up to spin him around or toss him.  It was really nice to see him able to not only tolerate everyone being there, but also have fun with them at times when he was feeling safe and receptive.  This was pretty significant progress compared to previous visits.

Generally, even when he does well with visitors, after they leave he lets out any bottled up stress that he’d been holding in.  We usually see a day or two of crying a lot and frequent meltdowns before he is back to himself.  We were expecting this to be the case after our holiday guests left.  I don’t think it has ever not happened.  But incredibly, this time it didn’t happen.  He was just happy!  We could see he was relieved to have his house back to himself, but there was no release of stress.  No crying bouts or meltdowns.  I thought, okay, well maybe it will come tomorrow.  Maybe he’s still holding it in.  But the next day (yesterday) was the same.  One very happy little R!  This is pretty huge for him!  It means that his stress levels and anxiety stayed at manageable levels despite having visitors.  I think he was probably self-regulating really well with his retreats to his spinning chair and his comforting back and forth circuit on our counters.  He is developing coping skills and that is going to be invaluable for him going forward.  I am actually seriously considering buying a second spinning chair for him to use at school.  Hmm…

The ball pit.  R has been going to a local special needs sensory gym since he was first diagnosed a year and a half ago.  I mentioned it in my previous post.  They have various equipment- 3 different types of occupational therapy swings, exercise balls, tents and tunnels, balance boards, sit-and-spin type toys, ride-on-toys, a sliding board, a quiet room with a bubble lamp and fidget toys, and a play room with developmental toys.  They also have a ball pit.  When we first starting going there R only used a few of the items.  But by 6 months in, he was using everything except the ball pit.  He was fascinated by all the brightly colored balls, but became frightened if I placed him in the pit, and would scramble out as quickly as he could.  A year later, and he was still too intimidated by the ball pit.  Until last week.  Completely out of the blue, he went for it, and he loved it.  You can watch the magic here.  This dude is awesome.  He does things on his own timeline.  When he’s ready, it happens.

Problem solving.  R scores severely delayed in cognitive skills. He scores in the low 50s (the mean being 100, like on an IQ test).  I have read that our kids often score well below their true cognitive level, particularly when, like R, they have low receptive language and are nonverbal.  However, I have noticed that R struggles to problem solve in very simple scenarios.  While it is far too soon to know if he is intellectually disabled, I think that his cognitive delays are real, and not just a matter of Autism masking his true abilities.  Last week my husband and I were discussing the fact that R had not yet figured out how to push a chair or box over to a place he wants to climb.  He loves to climb our kitchen counters, but requires a chair to boost himself up.  We leave one for him when we are letting him climb, and slide it away when we don’t want him up there.  Even if it is only 10 inches away from the counter, he would just cry, and never try to push it those few inches to the counter to be able to use it.  This kind of problem solving is present in one-year-olds, but just weeks from his 3rd birthday, R was not yet able to work it out for himself.  As if he had heard us discussing it last week and had been contemplating it ever since, this morning, first thing when he woke up, he confidently pushed a bar stool several feet until it was against the kitchen counter and proceeded to climb up like it was no big deal.  You go, kiddo.  You got this.