Two weeks ago, we had our annual IEP meeting for Lewis.

We sat at the preschool a few days before he turned four and decided he no longer qualifies for direct speech therapy.

This may be why:

Music to my ears.

 

My little guy is three today.

He made his entrance at 10:21 am on 10/21.

These three years have been a blur for me.  He spent the first few months of his tiny life dragged from evaluation to evaluation for his older brother.  The revolving door of therapists in our house is not an anomaly, but a normal way of life.

And now they come for him too.

The mommy guilt around the third child is tremendous.  We have photos – I know we do.  But they aren’t up.  Or out.  They are in file folders on various computers and memory cards.

I even forgot to order his birthday cake on time this week because I was dealing with a crisis with his brother.

But…

The best birthday gift to me came this morning.

Tim put two birthday hats on his head.  Lewis started to laugh. And said:

“Mom! Daddy has two party hats on his head!”

Clear as a bell.  A full complete sentence.  Correct use of sentence structure.  Spontaneous and unprompted.

His IEP is set.  We have a wonderful plan in place to keep this progress going. His speech sessions start Monday. I see nothing but a bright future for him.

It’s all good from here.   This year will be magical.  It has to be.

Happy Birthday to my little buddy.  Let’s go have some cake.

three is the magic number

Did someone say cake?

“Three is a magic number,
Yes it is, it’s a magic number.
Somewhere in the ancient, mystic trinity
You get three as a magic number.

The past and the present and the future.
Faith and Hope and Charity,
The heart and the brain and the body
Give you three as a magic number.” – Three is a Magic Number from SchoolHouse Rock

Four months.

That’s how long Lewis has been working with his speech therapist through Early Intervention.

Their last appointment is coming Wednesday.  He’s turning three in two weeks.

When they started, his delay was quite noticeable.  I could understand about 50% of what he said.  Others…not so much.  Getting services for him was a delicate dance – the SLP had been in at 18 months.  Then 2 years old.  Then finally again at 2 1/2 years old.

In June, two word sentences were hard to understand.  He could label, but not complete phrases.  Many consonant sounds were missing.  No subject-verb configurations.  And as their sessions went on, other things became apparent.  Limited play skills.  No eye contact.  Difficulty maintaining attention.  That all brought us to August and our developmental evaluation and the eventual PDD-NOS diagnosis.

Even in that August appointment, the gap between his receptive and expressive language was quiet apparent, as they noted several times throughout the report.

I took this video yesterday.  Four months after therapy.

A “what” question in “What Mommy?”.  An “I” statement in “I swimming” and “I can’t swim”.  A conversation “Because it’s broken”.

Pretend play with goggles, swimming on the blue rug.

I showed this and another video to his speech therapist.  She was shocked.  And happy.  And a little teary.

As was I.

My son is a perfect example of how a little bit of early help can go a long way.  We are so grateful.  And so proud of all his hard work to get there.

Now we have a lot of happy talk in our house.  His voice is music to my ears.

Happy talkin’ talkin Happy talk
Talk about things you’d like to do
You’ve got to have a dream
If you don’t have a dream
How you gonna make a dream come true ” – Happy Talk from the musical South Pacific

**********

Side note: I took this video and many others on our iPad.  I truly believe that our iPad aided in my son’s success in learning appropriate speech patterns.   He’s a whiz on the iPad and thanks to apps like “Speech With Milo”, “AlphaTots” and others like those, he learned sentence structure and letter sounds in a way that made sense to him.  I’m saddened by the loss of Steve Jobs for many reasons, but the impact he had on the special needs community is immeasurable.  On a personal note, he died too young from the same cancer that also took my dad too young.  Just as I am grateful for the 13 months post-diagnosis that we had with my dad, I join with the world in being grateful for the years post-diagnosis we had with Steve Jobs.  This family thanks you for your vision and for your faith in your products that changed an entire community.

Umi-goggles on! Little Bear? You see Little Bear, saaaaaay LITTLE BEAR!

I made the call.  But this time it was to cancel an appointment, not make one.

The quote above?  From my 2 year old Lewis.  He’s not just talking now.  He’s speaking, having conversations, and using lines from TV shows and making them his own.  This spontaneous phrase combined a line from the Nick Jr. show “Team Umizoomi” with a picture from his Little Bear toothpaste container.  He put his arms up to his eyes for the goggles, and tried to look for his toothpaste.

The canceled appointment?  His scheduled meeting with the zero-to-three developmental clinic for an autism evaluation.

The appointment had been recommended to us by Howie’s developmental pediatrician when I expressed concerns about Lewis’ language delay.  Remember her?  She’s the one that called me “Super Mom“.  At the time the appointment seemed like the fastest way in to see a speech/language pathologist, but she also mentioned that a full evaluation would be a good idea, considering Howie’s diagnosis.

It took me a long time to send in the paperwork.  I couldn’t put Lewis’ picture on the forms.  I couldn’t go through it all again.

But I finally put the package in the mail.  Without the picture.  And two weeks later I received the appointment date and time.  March 21st.

In the time since I mailed the papers, we’ve seen an explosion of language and development.  And now, I see none of the red flags of autism.  None.

I see pretend play as he zooms a car around the house and makes rumbling noises, or pours me a cup of pretend tea.  I see the ability to follow first/then commands and multi-step directions when I ask him to get his shoes, bring them to me, and then we’ll go outside.  I see tantrums caused by his inability to have a toy rather than meltdowns triggered by his inability to control his body.  I see him look me in the eye when we talk and I feel him hug me out of love.  I see an understanding of emotions when he draws a happy face and labels it “happy!”.

Yes, he’s drawing.  Recognizable faces.  And he can make the letter “L”.  From following my instructions.

All the “appropriate” developmental milestones for a two year old.  That’s what we’re seeing now.

I’m trying so hard to focus on how wonderful that is, and not that we’re still working on many of those milestones with Howie.  Our almost five year old.  They are almost evenly matched now in the social development area.  That’s still hard to face.  Because it won’t be long before Lewis moves ahead of Howie in many areas.  And then where will we be?

Mom! Mom! Get coat and go Kyle’s house!

This was yesterday.  Lewis grabbed his coat and handed it to me, asking to go to his friend’s house.  I was bursting with pride.  How could I say no?  He and I now have conversations, share cups of “hot toffee (coffee)”, read books and sing along to Glee together.  The articulation isn’t quite there yet, so I’m still going to have early intervention back when he’s 30 months old, just to make sure he’s on track for his age.  Just because I can understand him doesn’t mean the rest of the world can.

Right now, though, I’ll take it.  It was so different from where we were a year ago with him.  That’s why I canceled the appointment.

Last month, I wrote a post called Mother’s Intuition about learning to trust your gut when something’s wrong with your child.  I’m using my mother’s intuition again.  This time, however, it’s to say that everything is going to be okay.

I may be wrong.  But my eyes are wide open and I will be looking for any and every sign along the way.  And if I see something that makes me nervous, I know I’ll have the strength to trust my gut and make the call once again.

Two Boys in a Snack Tent

I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.” – I Can See Clearly Now by Johnny Nash

The paperwork has been sitting on my desk for three weeks now.  I can’t do it.

All those forms that I need to complete if I want to get Lewis evaluated by the team at the Center for Children with Special Needs…they are still blank.   I can’t fill them out.

I started to – I really did.  When we got home from the appointment with Howie’s developmental pediatrician (remember her?  she called me “Super Mom“?), I sat down at my desk with the stack of forms she gave me.  It was the quickest way to get in to see the speech/language pathologist, she told me, since we were still concerned about his speech delay.  And it couldn’t hurt to have a full evaluation, could it?

So there I sat that afternoon, pen in hand, ready to answer all those questions again, just like I did a year ago for Howie.

But then my eyes glanced down to the bottom of the page.  “Please include a picture of your child here.”

I stopped.  I put the pen down.  And blinking back tears, I walked away.

That was three weeks ago.  Right now, those forms are staring at me as I type (ok, they are actually under a pile of blue paper snowflakes, but they can still see me and I can see them…)

I can’t fill them out because I don’t see it with Lewis.

I’m going to try to explain what it is.

Here’s what I don’t see: I don’t see the long, protracted meltdowns that seem to go on forever.  I don’t see the impulsive behaviors and the inability to control them.  I don’t see the feeding issues, the sleep issues, or the motor planning issues.  I don’t see a child uncomfortable in his own skin.  I don’t see a child desperately trying to interpret the world around him.

Here’s what I do see:  I see empathy.  I see pretend play.  I see a child who can feed himself, undress himself, and sleep through the night unassisted.  I see the ability to hold a crayon and do a puzzle and transition from one activity to the next without a tantrum.

It was the complete reverse with Howie.  All the things I see with Lewis, we didn’t see with Howie.  And all the things we worried about with Howie, we don’t with Lewis.

That’s the it, I guess.  I don’t see the autism.

And that’s why I couldn’t put his face on that form.  Because I’m not sure it belongs there.

This is not to say that I’m not seeing things that worry me. I still see a child who understands everything but still has a very hard time expressing himself and that gap concerns me.  Lewis is very shy and won’t talk at all to anyone he doesn’t know.

There are some sensory issues too – he has a fit if his socks aren’t just right and would be happiest staying in his pajamas or not wearing any clothes at all.  This sensory avoidance stuff is very familiar, though.  Throw in a hatred of turtlenecks and a fear of touching cotton balls and this kid is…me.

So long story short, I don’t know what to do.

I do think he needs to see a speech therapist again for another evaluation.  We’ve come a long way but I don’t know where we really are in the grand scheme of all-things-speech.  If I fill out those forms for the developmental evaluation, we could see someone quickly since this particular clinic takes the youngest kids first.  But I can’t get past the fact that in my heart I feel like we’d be wasting all the other doctors’ time – that we would just be going there to get a faster speech eval.  I can’t stand the idea that we might take up an appointment time that we don’t really need.  We could use up a spot that could have gone to some other family – one desperately seeking answers and help.  A family like just like ours, only one year ago.

But what if I’m completely wrong?  What if I’m not seeing it because I don’t want to see it again?

Would I be so quick to give up my spot on the appointment list if this was my first child and not my third?

Sigh.  Parental guilt.  Never ending.

I do know one thing.  The speech pathologist from Early Intervention will come back in February to test Lewis when he’s 2 1/2 years old.  She promised she would.  I’ve already called her and left a message to set up an appointment.

And for now, I think I’m going to stop there.

I’m trusting my gut on this one.  If I’m wrong…if I’ve missed something…

I’m keeping all that paperwork on my desk.  Just as a reminder that it’s there, waiting for us, if we need it.

“Sometimes I think I know too much
’bout what goes on in the real world and such
Half of me is certain, the other isn’t sure
One half has the symptom, the other has the cure…

It’s a fine line, a very fine line
Split decision
It’s a fine line, a very fine line” – Split Decision by Steve Winwood

On Thursday, I made my triumphant return to storytime at the library.

There was no parade, no confetti, no shouts of “You Go Girl!!”.  But there should have been.

It was the first activity that Lewis and I had ever done together.  Yes, we’ve been to the supermarket, Target, and many other shopping adventures.  But never an actual “activity”.  Never something just for him.  And for me.

It wasn’t always like this.  When Gerry was a baby, we did everything.   We did all those gymnastics classes, music classes, and puppet shows.  I’d take him to the park to play and we’d stay all morning.  And we went to story time at our local library before he was old enough to walk.  Gerry would stay close to me, right in my lap, and while the other kids got up to explore, he always stayed put until the librarian was finished.  We’d spend hours at the library, sitting at the table, reading books, choosing our favorites and taking them home.

When Howie was a baby, we tried all those things again.  Before Howie was old enough for his own story time, I’d try to take Gerry to different activities at the library so he wasn’t missing out.  We had just moved to town and I thought it was a good way to meet other kids and parents.  Inevitably, I’d spend the whole time in the hallway with Howie.  He was either screaming, crying, or running away.  Following close behind would be Gerry, because he didn’t want to be in there alone.  After several attempts, we just stopped going.  I tried a few times when Howie was older (with baby Lewis in tow) and he still couldn’t sit there…for anything.  It was embarrassing.  I felt like the only one there chasing after her kid, covering his ears so the music wasn’t so loud or pulling him away from the crayons because it wasn’t craft time yet.  So after getting yelled at by the librarian for signing up for events and not showing up, we stopped even trying.

When Lewis was finally old enough for his own story time, I was a bit reluctant.  Ok, VERY reluctant.  Once bitten, twice shy.  I thought it was better for us to just do our own thing.  I can read to him.  I can color with him.  I didn’t want to go through the same embarrassment again.

But both my pediatrician and speech therapist told me Lewis needed be around kids his own age.  He needed to hear other 2 year olds talking and he needed to learn how to play and interact with them.  My friend has a 2 1/2 yr old, so we started searching around for activities that we could try – gymnastics, music classes – to get ourselves back out there.  I turned them all down.  It cost too much, it was 25 minutes away, the time of day was bad.  But really, I was just too afraid.

Then, the flyer for story time at the library came home.  A time just for 18 month olds – 3 yr olds.  Free.  Five minutes away. 10:45am.

It was like the library wrote the flyer just for us.  So my friend and I signed up.  Thursday was the first class.

I’d like to say it all went smoothly.  That Lewis sat in my lap and listened to the story and danced to the music and did the craft.  He didn’t.  The crayons were out when we first got there and all he wanted to do was color.  Of course, that was last on the agenda, and I had to keep pulling him away from the craft table.  He stood on my lap during the first story, left the room during the second one, and refused to give up his bean bag during the “pass the bean bag” game.

But you know what?  I didn’t care.

This time, I didn’t care what the librarian or the other parents thought.  We did our best to conform with the story time flow, but if we couldn’t, we didn’t.  When he screamed because he couldn’t color, I gave him his pacifier.  When he couldn’t sit, I let him stand, and when he couldn’t stand anymore, we left the room until he could come back again.  I didn’t force him to give up his bean bag for the game.  And looking around at the other kids?  They weren’t playing by the “rules” either.

When it was time to color, Lewis sat very nicely at the table.  He picked out the green crayon to match his shirt, and colored his little cut out person with scribbles and dots.  And when he was done, we were done.  I didn’t wait for some goodbye cue from the librarian.  I followed my own kid’s cues.  We left the library with my friend and her son.  No meltdowns.  No tantrums.  No screaming and yelling.  Lewis held my hand as we walked down the path to our car and we went home.  Just like that.

To say that my kids are different would be ridiculous and obvious.  Of course they are different – every kid is.  They have different strengths and challenges.  Howie is very articulate, yet struggles with sensory overload, auditory processing and behavior control.  Lewis is the opposite.  Certain activities will work for one child and won’t work for another.  There’s nothing wrong or shameful about that.

What I have to remember is that I am different now too.  I am a different parent than I was four years ago or even two years ago.  I understand my kids’ limits better and when it’s ok to push them and when it’s ok to pull back.  I am more focused on their needs and not conforming to what the librarian wants or thinks.  I attempt to work with in the parameters of the activity, and if my kids can’t do it, we leave and return when and if we can.  I’m not going to make the experience miserable for my child, the librarian or the other families in the room.

No more embarrassment, no more shame.  It’s not worth it.  Because the alternative is to never leave the house.  That can’t be an option.

So when the next Thursday story time comes around, we’ll be there again.  I’m actually looking forward to it this time.

You remind me I live in a shell
safe from the past, and doing’ okay
but not very well
No jolts, no surprises
No crisis arises
My life goes along as it should
It’s all very nice but not very good
And I’m ready to take
a chance again” – Ready to Take a Chance Again by Barry Manilow

We had our first snow of the season this morning.

When the kids saw it out the window they were beyond excited.  I went out to warm up the car and brought in a giant snowball so they could all touch it. That started the mad dash around the house for the winter stuff.  Luckily I’m disorganized enough that most of our winter coats, boots, hats and gloves were still out from last winter, so they were easy to find.  However, being that disorganized also means that I have no idea what fits anymore.

Howie was clamoring to go outside and play in the snow.  Maybe clamoring isn’t the right word.  Demanding?  Insisting?  Perseverating?

It was 8:30am and I realized that Howie wasn’t dressed yet for school.  We need to be out the door by 8:35 to get to school on time.  I pulled him away from the window to help him get dressed. To distract him, I asked if he wanted to wear his boots to school today.

He ran away from me and started jumping up and down.   “Hug!  Hug!  Hug!  Hug!”

I grabbed him back and wrestled with his pajamas. I asked again if he wanted to wear his boots.

“No! No! No!  Hug! Hug! Hug!”

“No hug until you get dressed and answer me!”

More jumping.  “Hug!  Hug!  Hug!”

“You need to look at me and answer me first!  Do you want to wear your boots!”

And did I mention that while this was going on, Lewis would come over and gently tap me on the back with a Wii Remote and fall to the floor and roll around?  I’m sure he’s imitating some move in a game that Gerry plays, I’m just not sure which one.

Autism Mom was on one shoulder, gently reminding me that we would get nowhere until he got his hug.  Running Late Mom was on the other shoulder, already at the end of her rope at 8:32am on a Monday.

At 8:33am, Autism Mom kicked Running Late Mom off her shoulder.  I pulled Howie in for a hug.

“I would like to wear my boots and make footprints in the snow around the tree.”

I gathered up Lewis in his winter coat and gave Howie his boots, praying they would still fit.  They did, of course.  As did his coat and gloves and every other winter item from last year.

We headed outside to the car. At this point it’s pouring rain (this is New England – don’t like the weather?  Wait five minutes).  As I put Lewis into his car seat, Howie ran around the front yard making footprints in the quickly melting snow.  It was a scene right out of “The Snowy Day” by Ezra Jack Keats.  He was getting completely soaked but he didn’t care.  I joined him for a minute and we compared footprints.  His smile returned and he climbed into the car without complaint.

At school, we made footprints together as we raced towards the door.  I handed him over to his one-on-one aide and reminded her that his sneakers were in his backpack.  Howie started to run for more snow, but she caught him at the door.  That motion made him slide in the snow, causing his footprints to make a giant swoosh in the now slush by the school stairs.  This giant laugh came out of him – the laugh that tells me he’s going to be ok.  I ran back to the car through the rain to get Lewis home.  I could still hear him laughing.

When getting Lewis out of the car, I handed him the one pound bag of Dunkin’ Donuts coffee I had bought the day before.  He carried it in, and wouldn’t let it go.  I turned around for a moment to get my coffee cup ready, and he had climbed up into his high chair.  This is usually his signal that he wants something to eat.

Following the advice of the speech therapist, I looked him right in the eye and asked him what he wanted.

He pointed to the bag of coffee.

And for the first time, a spontaneous two word sentence response to a question:

“Sum No-Nut?”

Maybe this Monday won’t be so bad after all.

“Talking to myself and feeling old
Sometimes I’d like to quit
Nothing ever seems to fit
Hangin around, nothing to do but frown
Rainy days and Mondays always get me down” – Rainy Days & Mondays by The Carpenters

Dear Jan the dental hygienist-

I just had to write you and thank you for today’s visit with Howie at the dentist.  I have to tell you – I had been dreading this visit all week, all month really.  Every time I looked up at the calendar and saw “Howie: dentist appointment 11:15am” I got a lump in my throat.  There were a million different ways today could have gone awry.  But it didn’t.  Thanks to you.

Maybe I should back up and tell you what a rotten week I’d had.  Or should I say “crummy week”, because that’s the word that Howie used to describe his day on Tuesday.  The week started with some conversations with a few people who I thought really understood me, but then I realized that wasn’t the case.  Then came Howie’s “crummy” Tuesday – a day where everything went wrong for him at school.  I tried to take away some positives from that day – his teachers had said he was very articulate about why he was having such a hard time – but it was still breaking my heart to see him so angry about school.  Four year olds just shouldn’t have bad days.  That night ended with him asking for his usual three blankets on his bed, plus his weighted blanket, a giant body pillow and his three foot long stuffed dog in bed with him.  The kid was out of sorts even at bedtime.

Wednesday came along with new challenges and guilt.  I took Lewis to the doctor for his two year old checkup.  The kid screamed from the moment we entered the exam room until we left.  And I mean screamed.  He must have some post-traumatic stress thing going on with the doctor’s office from being there so much.  When he was four months old, he had bronchiolitis and we made many trips to that office to check his breathing.  In recent months, we’ve been in to get his ears cleaned after worrying about his speech delay.  Can’t blame the kid for hating the place.  He calmed down enough during the appointment for the doctor to advise me to get an independent speech evaluation.  The guilt was swirling around me as she said “I don’t think he has PDD, but…”, and then Lewis started screaming again.  And in my head, I was screaming too.

Jan, Thursday came and it was Lewis’  2nd birthday.  I was still recovering from Monday, Tuesday and Wednesday.  More guilt piled on me as I realized that I had no party planned, no cake made, and no presents wrapped.  He was falling into the classic “third child syndrome”.  On a day when I should have been celebrating, I was wallowing in family pity.  The day ended ok, after a reminder from my husband that “he’s two – he doesn’t know”, but I still felt like I was failing him and my family.  The kids weren’t happy and I couldn’t even pull together a simple birthday party for my own kid.  What was happening here?

So Jan, you can imagine how I felt when Friday arrived and it was time for Howie’s dentist appointment.  Of course, first we had to get through our monthly team meeting for him at his preschool.  The whole ride to his school I was cursing myself for scheduling two anxiety riddled events in one day.  But the team meeting went really well.  He’s doing great in school and two months in, he’s fitting in just right in the full day inclusion program.  This week had been tough for him, they said, but it was an anomaly and not the norm.  His teachers were looking at this week as a teachable moment – his “engine” was running high all week and he was having a hard time regulating himself.  I told them I was pretty sure he was coming down with the same cold his brothers had, and his sensory issues are usually out of control about 3-4 days before he actually gets sick.  His teachers really seem to understand him and his needs, and I am constantly impressed by how well they work with him.

Even after all this, I was sure I should have canceled that dentist appointment.  We really needed it to go well.  Jan, his last experience at the dentist was miserable.  It was their policy that parents stayed in the waiting room when the kids were having their teeth cleaned, and they stuck with that even after I told them he was on the spectrum and had sensory issues.  Fifteen minutes in, I could hear him crying.  I went to check, and they stopped me and told me he was fine.  When he came out another ten minutes later, I could barely hear what the dentist was saying over his sobbing.  I knew right then we had to find another place.

Which brought me to your practice, Jan.  We had to get this one right or else I feared I’d never get him back to a dentist again.  I talked about it all week.  Offered all sorts of rewards and earning opportunities.   And I made that call that I dread – I called your office before the appointment and told them he was autistic.  I struggle with this all the time, the “should I tell” and the “who should I tell”.  I didn’t want to say anything.  I don’t want my son thought of as being different.  But I had to.  I needed him to be treated differently this time.  I needed you to know before we walked in that door.

And Jan, you were wonderful.  You took us in quickly and quietly told me you had been given the “heads up”.  You looked right at him when you spoke and guided him gently through the appointment.  You told him we were doing “science experiments” when you painted his teeth purple (his favorite color) to see the plaque.  You let him sit on my lap the whole time, and whenever he got nervous, you backed off, talked to him about what you were doing, and took your cues from him.  And he did it.  He had his teeth cleaned, polished, and covered in fluoride.  I was amazed.

When I thanked you for your kindness and understanding, you told me you knew.  You told me about your cousin’s child with sensory issues and your nephew with Asperger’s.  And that clinched it for me.  You got it.  I should have known.

And that’s why I had to hug you when we left.  If anyone knew that I did that, they’d be shocked.  I’m not a hugger.  But it was the only way I could express my gratitude for what you did for us this morning without crying.  You took what could have been a potentially disastrous appointment and turned it into something special.  Life changing.  My son left there with his giant purple balloon and told me he “really liked this new dentist”.  I couldn’t agree more.

On behalf of my family and my son’s teeth, I thank you for all that you did. See you in six months.

Sincerely,  Alysia

P.S.  TGIF!!

Monday morning feels so bad
Everybody seems to nag me
Come on Tuesday I feel better
Even my old man looks good
Wednesday just won’t go
Thursday goes too slow
I’ve got Friday on my mind” – Friday On My Mind by The Easybeats
(more…)

So first of all, a big thank you.

I wrote one line last week about my youngest having his second early intervention appointment.  One line. And I got the most amazing, most overwhelming support from my friends – both in person and in cyberspace.

I got the phone calls I expected that day, the ones from my mom and from my husband.  But what I didn’t expect were the e-mails and comments and tweets (yes, I said tweets…sigh) from my friends here in town and across the globe.  I can’t express how much that meant to me.  It was so different from when I went through it with Howie and I knew only one person who would understand.  To have so many others check in with me…I’m speechless.  Thank you.

So, speaking of speechless…

It’s taken me a week to really be able to process our visit with the speech therapist last week.  It was the same woman who evaluated Lewis in May, so she was very familiar with our situation.  We were able to skip over most of the Michigan Early Intervention Developmental Profile and go right to the speech/language portion.  She went through the test, trying to get him to use his words to ask for the puzzle pieces, the blocks, the animals…and got nothing.  She tried to get him to repeat her words so he’d start talking.  She tested him a bit, forcing him to ask for something before giving it to him.  Nothing.

So since he wouldn’t talk, the therapist and I did instead.  She asked me how many words I thought he had (about 20).  She asked me how many of those words someone else could understand (about 10).  And she asked me how many of those words that someone else could understand were also spontaneous.

Spontaneous?

Meaning how many did he say on his own without prompting, without repeating.

About five.  Sigh.

The therapist wrote down a bunch of notes and asked Lewis questions.  He could follow two or three step directions but wouldn’t say anything to her.  I figured I needed to chime in here.  He has words, I told her.  I said I felt like I was walking a fine line telling her things, but I wanted to be honest.  I want him to get help if he needs it, but I was afraid that by telling her the things he could do, it might change his score, leaving him ineligible for services.  But I needed to give her the whole picture.  It wasn’t fair to Lewis, to the therapist, or to the system if I didn’t.

So I told her everything.  I told her he could count to 12, but wasn’t sure if anyone else could understand him.  She asked to hear that, and as she listened, she shook her head.  “I probably would have known he was saying ‘two’, but only because I knew the context”.  I told her he knew all the letters of the alphabet, and tried to sing along with songs but no words came out.  I told her that even though I knew he could say “Mama”, he never actually called me that.  I told her that I know he understands everything, but he’s starting to get frustrated because he can’t get us to figure out what he wants.

The therapist told me she appreciated my honesty and understood exactly what I was saying.  The counting and the letters, while great, isn’t really “speech” in her opinion.  It’s just rote sounds back.  She’s looking for labels of nouns, verbs to get his wants and needs across, and expressive language.  She sat there and scored the speech portion of the Michigan while Lewis had a snack.  Then she scored it again.  And again.

She looked up at me and her face said it all.  Yes, his speech was delayed.  But not delayed enough for services.

Same old story for us.  Just like our evaluation in May, and just like almost all of Howie’s evaluations, we’re smack dab in the middle of the “gray area”.

I could tell the therapist felt terrible.  She told me that she knows he needs help and would really benefit from services.  She’s worried about the gap between his expressive and receptive language, and is concerned that he’ll start to get frustrated and we’ll see behavioral problems creep out.  She could pick him up under “clinical judgment” for six months, but just like she told me last time, she’s worried that we’d lose time when he really needed it – the 2 1/2 yrs old to 3 years old time frame, where the speech demands are so much higher.  She recommended waiting again until January, doing another eval, and then she could pick him up from February to August, right before he starts preschool.

In addition, she gave me some new tips for getting Lewis to start talking.  She told me to “sabotage” his day a bit when it was just the two of us home, keeping things from him until he attempts the word.  I should concentrate on getting Lewis to say the last sound of the word, because he would use the same “b” sound for “bus” and “ball”.  She recommended that I focus on just saying one word, not a two word combination.  At that point, I had been trying to get him to say “more juice”, but in her opinion getting him to say just “juice” was the most important part.

(on a side soapbox note, the therapist also told me that if we had qualified, the fees would have been significantly higher than we had paid in the past.  Because of budget cuts, the department of public health was forced to either raise fees or increase eligibility requirements even more – by a 50% delay.  That meant that two year old would have to be speaking at a one year old level in order to qualify for help, thereby missing a whole group of kiddos who need help.  Of course, we all know that it means that when those kids get to school, their delays would have been SO significant that the department of education would have been footing the bill…same pot of money, just different department.  Just dumb.  ok, off the soapbox)

So, long story even longer…

This past week we’ve been trying really hard to implement her suggestions.  I wouldn’t let him down from his high chair until he said “done” instead of “da”.  If he wanted a banana, he had to say it and not “na na”.  And if he wanted out of his crib, he had to tell me “hi, Mama”.

It’s working.  He says “done” – the whole word – when he’s finished eating.  He’s saying “ba nana” (with the space).  And while he’s still not calling for me with “mama”, he will repeat “hi mama” perfectly when I say it first.

Great, right?  So why do I feel so guilty?

In one week of intensive work on my part, we’re getting somewhere.  It’s not like he caught up in a week, or will even catch up in a month, but we made progress.  Because I was giving him my attention.  You know, what a mother should do.  A mother who is able to focus on her kid.  A mother who isn’t completely exhausted with…everything else.  I know it’s pointless to play the “what if” game, but in this case I can’t help it.

Now it’s time for us both to play catch up.

“I may know the word
But not say it
I may love the fruit
But not taste it
I may know the way
To comfort & to soothe
A worried face
But fold my hands
Indifferent”
– I May Know The Word by Natalie Merchant

I am completely exhausted.  All in the name of science.

About three weeks ago, I received a letter in the mail from the Interactive Autism Network, asking if we’d participate in a research project through Children’s Hospital.  The study, sponsored by the Simons Foundation, is looking at families with just one child on the autism spectrum in attempt to understand if there’s a genetic or environmental link to autism.  All participants receive an autism evaluation for their child for free. My family fit the research criteria perfectly : only one child with an ASD diagnosis aged 4-17, one or more typically developing sibling older than 4, two biological parents willing to participate, and no other cases of ASD in the immediate or extended family (that we know of).

At first, I put the letter into the recycling bin.  I wasn’t all that interested in putting my family through some research project, and I was somewhat skeptical of the study as a whole.  But something kept bringing me back.  We fit the criteria perfectly.  What if by gathering data on our family, we were able to help scientists find a cause for autism?  What if we were able to help identify ways for earlier detection, and thereby earlier intervention?  I did a little research into the Simons Foundation and the project in general, talked to Tim about it, and decided to give them a call.

I asked all the appropriate questions, and got all the acceptable answers.  Yes, it was all anonymous.  The blood samples and questionnaires were all assigned an ID number so we could not be identified.  The information from the assessment would be ours alone and we could choose to share it with school and/or our doctor if we wanted to.  The blood draw would be handled by Children’s Hospital by a team comfortable working with kids on the spectrum (and 8 year olds who are terrified of needles).  They would even send us a practice kit and a social story for the blood draw.  The kids would be compensated for their participation, and the researchers would come out to the house for the interview portion of the study.   After getting the ok from Gerry about the blood work (five minutes of torture equaled a new Star Wars Lego set in his mind), we set up the appointment.

(speaking of Gerry, we included him fully in the discussion of whether or not to do the study.  His participation was important and we thought he was old enough to understand the purpose of the research and how he could be helping scientists discover the cause of autism.  He thought about it for a long time, as he is apt to do.  He came down on the side of helping kids like his brother.  Couldn’t have been more proud of his thought process.  The only exception is when I told him that the criteria involved having one kid who is on the spectrum and his other sibling not on the spectrum.  His response to me: “well, I know I’m not.  But we don’t know about Lewis yet.”  Ugh.  That was the kick in the gut that I didn’t need).

So today two researchers came out to the house and spent four hours with me and Howie.  One researcher administered the ADOS (Autism Diagnostic Observation Schedule) to Howie, and the other one went over the ADI (Autism Diagnostic Interview) with me.  Howie did great – he spent almost the whole four hours at the table with the woman with just a few short breaks.  On the other hand, I was a wreck.  The questions were incredibly comprehensive and detailed, asking me to recall a million small details of the last four years of our lives.    She asked about his speech, social interactions, and what developmental milestones were met or not met.  She asked for specific examples of speech patterns and moments of aggression.  She asked when we first noticed problems.  She asked four straight hours worth of questions.

I tried really hard to focus.  In so many ways, it was as if I was reliving those years all over again.  I could feel myself starting to fidget, and my body language was clearly showing my discomfort.  I know this because the whole interview was videotaped, and the little screen was turned around facing us at the table so my crossed legs and arms were staring right back at me.  It didn’t help that every question that I answered out loud for Howie I was answering in my head about Lewis.  A little bit of knowledge is a dangerous thing, and I was diagnosing Lewis along the way.

After finishing the ADI, we went through two more questionnaires – one about Howie and one about Gerry.  She gave me a few others to complete before our blood draw day at the hospital, including one social behavior questionnaire that I answer about me and one that I answer for Tim (and vice versa – that should be interesting).  They closed up their video cameras and went on their way around 2pm.  Thirty minutes later, Howie was out for a nap.  He was done.  And so was I.

I’m still having some mixed feelings about the whole thing, even after today.  We’ll finish up the study at the hospital in a few weeks and get the complete report from the assessments in about 6-8 weeks.  I’m not really sure what we’ll do with the information we get.  The scientist in me says that I should just file it away, that the point of participating is to help gather data with the hope of discovering a cause of autism spectrum disorder.  That’s pure science.

Then I remember there is no scientist in me.  Just a parent looking for some answers and some hope for the future for myself and my family. Just like so many other families.

She blinded me with science!”
And hit me with technology”
– She Blinded Me With Science by Thomas Dolby

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