The Journey to “Normal,” Part 3: Our First Attempt at Therapy

Imma in November, 2009, just before she started therapy.

From the time Imma was 2 ½ until she turned 3 in June of 2010,she had sessions with both a speech therapist and an occupationaltherapist.  In December of 2009, I wasextremely hopeful that this would “fix” her. I use that word because that’s what I was hoping for.  I have read a lot of posts by parents withspecial needs children who say things like, “My child doesn’t need fixed.  S/he’s perfect just the way s/he is.” Or, “Ifmy child could do x, y, z, s/he wouldn’t be the same person.” I get that, Ireally do.  I totally understand thatImma is who she is because of her disability and as much as I love who she isand would never trade her for anyone, that does not mean that I want her tohave a disability for the rest of her life. Let’s face it, it’s a lot easier to get along in this world if you canspeak and understand verbal communication. So, why would I want my child to try to navigate in life without thosebasic skills?  Of course I want her tocontinue to have all the amazing gifts she has. Imma is extremely gifted inmany areas, especially when it comes to math and spatial reasoning.  I’ve literally watched in amazement as shehas put together complicated puzzles quickly, just by glancing at the shape ofthe piece she needs next.  No, “do thecorners first and then the edges,” she doesn’t even need a picture.  She can just look at the shapes and put ittogether. She can subetize like no child I’ve ever seen before, though she’snot exactly Rainman with the box of matches yet, though she is gettingthere.  If Imma tells you she sawsomething somewhere, it was there.  Ihave multiple examples of me telling her that’s not possible, you didn’t seethat, and then I’ll find out that yes, she did, it really happened.  She is highly visual, has almost aphotographic memory.  She has a lot oftruly amazing gifts.

But if you don’t speak “Imma,” it doesn’t matter, becauseyou’ll have no idea what she is trying to tell you.  And 99.9% of the people on this planet don’tspeak Imma.  So I want(ed) her to be ableto talk.  I want(ed) her to understand whatpeople were saying to her.

And ECI (Early Childhood Intervention) was going to fixthat! Or so I thought, at first, for a few weeks.

The speech therapist was a very nice YOUNG lady who came toour home once a week. She played with Imma, tried to engage her in differentactivities. I joined in the sessions. We would drive cars on the bed and saythings like, “Truck go!  Vroom, vroom!”  Imma would crash the cars into eachother.  We would put people in the carand say, “Go in!”  Imma would sometimestry to repeat us, and then crash the cars. We would “cook” dinner at the play oven. “Stir, stir, stir.”  Imma wouldsometimes smile and attempt to say something that was maybe “stir” or maybenot.  At the end of each session, I wouldask  questions.  “Why isn’t she trying to talk? What can I doto help her?  What if she is justrefusing to talk?”  And I would get thesame answers. I am a teacher—an Early Childhood Certified professional—and Iwould be given the following advice, “Play with Imma, talk to her about whatyou are doing.  Use short, two wordsentences.  Read her stories. Talk aboutthe pictures.”  Really?              DOYOU HONESTLY THINK I HAVEN’T BEEN DOING THAT FOR THE LAST TWO-AND-A-HALFYEARS?? When I would say things like that, I would get the same answer, “Justkeep trying.  She’ll get it.”

And I don’t think that the therapist didn’t want to help ordidn’t love Imma. I think she didn’t know what else to say.  That was the standard answer for non-verbalchildren, regardless of who the parent was and regardless of what theunderlying problem was.  So she continuedto come, we saw minimal progress, I grew more and more frustrated, and Imma washappy and non-verbal.

Now, non-verbal does not mean quiet. I want to make sure Iexplain that. Imma made plenty of vocalizations.  She could say some words.  In fact, it was about this time when Istarted making a list.  I made an excelspreadsheet of all of the words she said, the date that I heard them, if I knewwhen it was, phrases, songs she had attempted to sing.  I was taking this extremely seriously.  I was trying to prepare for an attempteddiagnosis and I wanted diagnosticians, doctors, psychologists, specialists,whoever, to know exactly what my baby was capable of, whether she was willingto do it for them or not.

Most of the words Imma said had to do with food.  These were the things she was requesting, thethings she really needed.  “Cookie,” “cup,”“water,” etc.  And some words I think allkids know, such as emphatically screaming, “NO!” when she didn’t wantsomething. The areas where Imma was struggling the most had to do with answeringquestions and responding to every day conversation.  I have since learned that those every dayscripted conversations that we all have are called intraverbals. Intraverbalsare the words we use to fill the void of conversation, they are the responseswe choose in order to respond to others in a way that makes sense.  And the majority of what we say really is scripted,if you think about it.  What do yougenerally say when someone asks, “How are you?” “Fine, thank you. How are you?” That’s what I say the vast majority of the time.  In fact, look at the phrases we use when wewrite.  How often do we use the word “vast”in conversation?  Rarely, but when youjust read the phrase, “vast majority of the time,” did that sound unusual toyou?  Probably not because that is aphrase we use often when we are writing, sometimes when we are talking.  Those words go together.  You and I learned what words go togetherthrough a natural process when we were toddlers.  We had to experiment a little, but our brainsare naturally programmed to pick up on how other people use language.  We process it so quickly we don’t even stop tothink about it.  We don’t need anyone todefine abstract concepts like articles “the” and question stems like “why.” Ourbrain has just learned how to do that. 

Imma’s brain didn’t develop that way.  She has to learn what each one of those wordsmeans individually.  Now, at 5 ½, she canremember phrases, often from movies or television shows, and she is good aboutinserting them into conversation when they make sense, or almost make sense,but her brain, for whatever reason, does not automatically create that dialoguefor her.  That is a lack of intraverbalskills. The only way she is ever going to learn how to do that is if someone A)figures out how to teach her brain to pick up on those phrases and understandthem or B) teaches her the meaning of every single word in the Englishlanguage, including abstract ideas, articles, and other miscellaneous words wedon’t even consider when we talk because they just come naturally.

I decided to add this information now because I hope some ofyou will find it useful, not because I had any idea when Imma was 2 ½ that thiswas the problem. I have only come across this information recently.  However, when she was 2 ½ and we just startedworking with the speech therapist, Imma was not progressing and if I had knownthen what I know now, I’m not sure I would have continued in that program.  The tools ECI was using to try to teach herhow to speak weren’t working, and they could not possibly have worked because shewasn’t capable of doing what they wanted her to do.  It was as if they were trying to build ahouse where there was no ground.  Itdoesn’t matter how strong the timber or how many nails you put in, if there isno ground, your house won’t stand.  Andyes, I meant to say ground, not foundation, as your brain was trained topredict.  A house with no foundationwould have a much better chance of having some semblance of standing, at leastmomentarily.  A house with no ground doesn’tstand a chance at all.

But we pressed on. 

Imma, age 3.

 The therapist came, told me to keep doing what I was doing. The OT wentto pre-school once every two weeks and left reports that Imma wasn’t speaking,wasn’t playing with the other children, barely made eye-contact, but was happyand squealing and cute-as-a-button. The teachers continued to tell me howconcerned they were and that they didn’t make Imma do the things the otherchildren were expected to do, like stay with her group or finish her project,because they weren’t trained to teach a child like her and they didn’t know thetechniques it would take to make her comply. She wasn’t a behavior problem, she just didn’t understand.  No, the behaviors would come later.  Pre-school became a daycare and my child wentto a place for eight or nine hours a day where no one knew how to help her.

And I got tired. Tired of trying to figure out how to help, tired of trying to figure outwhat was wrong. Tired of listening to other people who didn’t understand mychild.  Tired of hearing what she couldn’tdo.  Tired of hearing what I was supposedto do, which was usually what I was instinctively doing.  I kept looking, kept trying to figure outwhat was wrong with her.  I looked intoapraxia of speech, selective mutism, language processing disorders.  Again, these all seemed to fit, but notexactly.  It wasn’t until the very lastsession Imma had with ECI, the one right before she turned three years old andwould be become the responsibility of the school district that the therapistfinally mentioned the word I’d been terrified to hear.  At our last session, she handed me somepamphlets and said, “I think you should read these. It talks about differentoptions for diagnosing and treating autism.”

There it was, the “A”word, hanging out in the air between us, charting it’s course to my heart justas lethal as any bullet.  Autism.  In six months, neither therapist had evermentioned the word, written it on any of the reports we had gotten, given usany information about it.  But, as sheexplained, that’s what she thought was wrong. She thought my baby had autism. And, while treatable, autism is a life-sentence.  You don’t get cured from autism.

At the time, I felt that we were at the very bottom of thevalley, down in a chasm, away from all light and hope.  But I was still hopeful that we would find apath out of this darkest of corners.  Even with the therapists both explaining thereasons why they were fairly certain that Imma was autistic, I still chose notto believe it.  I really started digginginto every aspect of the condition.  Ilooked at the causes, the symptoms, the treatment, the prognosis.  I needed more proof.  I needed a diagnosis.  It was when the school district was in theprocess of evaluating Imma to see if she had autism that I found out there wasan entirely different level of depth to that valley, one that I couldn’t evensee on her third birthday.