Jinx

Well, I did it again.  Jinxed myself.  In my last post I mentioned how normally after we have overnight guests, the day or two after they leave R will have frequent crying bouts and meltdowns as he processes the stress that he had bottled up during their visit.  This has never not happened.  Until this week, when after we had family visiting for Christmas we went two days post-their-visit without incident.  Homefree.  Or so I thought.  Mere moments after publishing my post this morning, R began getting fussy.  Over the next several hours he became increasingly unhappy.  Little bouts of crying turned into big bouts of crying, and by 3 pm, full blown meltdowns.  The next four hours were awful.  I put him to bed early and I can still hear him sniffling in his sleep from the next room over.

If I hadn’t shared my excitement over his lack of bad day after visitors this time, would it have happened?  I know logically my choosing to share or not share, feel excitement or not, should have no impact on the future.  So why does it always seem to, against all reason?

Going to bed.  Tomorrow will be better, God willing.

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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.

To the Mom of the Typically Developing Child at the Special Needs Gym

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R, enjoying a fidget toy in the spinning egg chair at the special needs sensory gym

I realize that I don’t know your story.  I realize that your child may have a speech delay, or been followed by EI after a premature birth, or beaten a devastating disease.  I don’t presume that she has had a completely typical life.  But I can see, at this point in time, that she is a typically developing toddler.  I have seen you and her almost every single time I take my son to the special needs sensory gym.  She is over a year younger than my son, and is a sweet, curious, and playful little girl.  I see that.  I see that she is adorable.  I do.  I know you wonder why I avoid you and her, why I cringe when she barrells over to us.  I know you are perplexed when I don’t seem appreciative that you have prompted her to greet my son, when you have praised her for offering him a toy or “helping” him with something.  I know you thought it was strange and perhaps a bit rude that I was not eager to bring my son into the rocking boat with her when she requested and you asked us.

Here’s the thing.  I don’t mean to sound unkind, but the truth is, we come to this place to avoid children like your daughter.  There’s nothing wrong with typically developing kids.  It isn’t that I don’t like them, that I don’t like your daughter.  I have two NT kiddos at home myself.  But the special needs gym is a haven for my Autistic son–and I’ll admit–for me.  It’s the one place where we can completely be ourselves.  It’s the one place where my son is not the odd one out.  It is the place where no one bats an eye when a child is happily stimming away, or has a meltdown.  It’s the place where I don’t have to explain anything to anyone.  And it’s the place where I don’t have to see the harsh comparison between him and his typically developing peers.

It’s also one of the few places he can enjoy due to his anxiety in public spaces.  We cannot go to the library.  We cannot go to the mall play spaces.  We cannot join a mommy and me group or take a gymnastics class or visit the Y.  But we can go to the special needs gym, and it is my son’s favorite place in the entire world.  It is also a place where he is generally free from the attentions of other children, which he finds agitating.

So when your daughter runs over to us, staring me in the eye, chattering away, and shoves a toy in my son’s hands, it is all wrong here, in this safe place.  He freezes, waits for her to leave him be.  I cringe, hearing all the words my son can’t say from the mouth of a child half his age.  I see her share attention and play pretend and it just reminds me how different my son is.  It pops my happy bubble, and I feel the worry creep in.  I don’t need my boy to speak or look me in the eye, I don’t need him to play “appropriately.”.  Yet absurdly, it still hurts to see other children doing those things so easily, so naturally, like it’s absolutely nothing.

When your daughter asked my son to join her in the rocking boat, and you repeated the question when he didn’t look or respond, I had to explain.  I had to tell you that he doesn’t speak or understand yet.  But I don’t come here to explain.  I come here because it’s supposed to be the place where explanations are not necessary.

I saw the confirmation on your face.  You had been pretty sure he was different, but now you really knew.  I watched you prompt your daughter to always say “hi” and “bye” to my son after that.  I watched you praise her when she brought him things he didn’t want.  I watched you caution her to give him space when it was clear she overwhelmed him.  Perhaps you were just doing what you would have done with any child.  But a part of me felt we were being used as props to teach your perfect child how to interact with “those” kids.  I resented it.  We don’t need the charity of your child’s attention.

After that I started to avoid you.  I know you noticed, but I’m not strong enough yet.  There are other special needs moms that can interact with moms of typical kids and it doesn’t affect them.  They can graciously manage the curious glances and fishing comments of parents, and the in-your-face antics of typically developing children.  They can smile at those children and mean it.  They can laugh with you and share stories like it’s no big deal.  They can drive home after without crying.  They are strong.  I’m not there yet.  One day I will be, then maybe we can have a cup of tea and you will show me what I missed out on while I was trying to cope.

Vanishing

Once, when R was 9 months old, he picked up a crayon and drew a long, bold line across the paper sitting out on our kitchen table.  It has been more than 2 years since that day, and he has never used a crayon again.

Around 14 or 15 months of age we also thought he was saying one or two words.  But it faded, and by the time he was diagnosed at 18 months, we were no longer sure the words had been there at all.  To this day, I honestly don’t know.

At 22 months he began using two signs.  “More,” and “milk.”  A few months later he lost them.

He once hand-led me to something he needed, which was huge for him in the communication department.  I was incredibly excited.  But it never happened again.  Another time he pushed a packet into my hand, a clear request for me to open it.  This too never happened again.

We worked for months on learning how to dump something out of a container.  It may sound like an odd goal- but he would only try to reach into containers, and there are many types of containers that are too narrow to fit your hand in, so you dump or pour instead.  This is a standard developmental skill that babies develop between 6-12 months of age.  We worked on it for about 6 months, and then one day he seemed to be getting it.  It lasted about a week and then we never saw it again.

When he turned two he began imitating some of the nursery rhymes he loves to watch on his videos.  We heard “ee-i-ee-i-o” from Old MacDonald, and we heard snippets of the ABC song.  He was completely nonverbal, so these were almost like first words for him.  But a few weeks later they disappeared.

This has happened with so many things.

I don’t know why he can do something once, or a handful of times, or even for weeks or months, but then lose it.  Our therapists have offered a few suggestions.  It could be a motor planning difficulty, one therapist suggested.  He may know what he wants to do in his brain, but not be able to make his body cooperate.  Another therapist opined that he had not put down the developmental foundations necessary for these skills, therefore he cannot consistently recall them.  In other words, if you try to run before you can walk you will fall down a lot.

Whatever the cause, it can be hard to watch.  Now, when he does something new, I am afraid to get too excited.  Sometimes it seems that whenever I share a success with a friend or family member he loses it shortly thereafter.  I feel like I will jinx it, so I keep it to myself, like an early pregnancy, waiting for that moment when enough time has passed that it feels safe to share.  That it feels like he will keep it.

Down The Hallway

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The first hallway R is working on walking down at his school

Yesterday R walked with his sped teacher from the school lobby, down the first hallway, and around the corner to the hall where his classroom is located.   This is huge.  His school ST and OT were there, and everyone in the front office- the principal, the school secretary, and the school nurse- came out to watch and congratulate him and us.  R does not even start school for another 6 weeks.  Let me explain.

R has extreme anxiety in unfamiliar places, and I use the word unfamiliar loosely here.  We generally have to visit a place several times per week for several weeks in order to acclimate him to it and put it on the “familiar” list of places that he tolerates.  During those first weeks, he will scream and cry, melting down the entire time.  He does not calm down after a certain amount of time passes.  Having favorite foods, toys, or activities at the unfamiliar location does nothing to reduce the difficulty.  He will still need weeks of regular practice exposing himself to the environment, no matter how many of his favorite things are there.  If we go less than twice per week he never adjusts at all.  Often, places that started out with weeks or months of meltdowns go on to become favorite destinations once he has adjusted.  We knew that school would be no exception, in fact, school would be harder because it is such a large place.  He has to adjust individually to each part of the school, both outside and inside, and each hallway or room he needs to be able to enter.   So when school started for my older two children in September, I opted to drop them off and pick them up each day so that I could take R along and give him regular exposure to, at the very least, the outside area of the school grounds.  This was still 5 months before he would start school himself.

At first he would burst into tears as soon as we parked.  He would not walk, so I would carry him, as he cried, from the car to the drop off point, or, after school, from the car to the pick up point.  As weeks passed, the crying lessened and he began walking on his own while holding my hand.  At this point one of his therapists suggested I request permission to begin walking him into the school, and, ideally, work on walking him down the hall toward the preschool classrooms.  I asked the special education liaison, who told me I had to ask the school principal.  The principal agreed, but said that legally I could only go as far as the entry lobby unescorted, so she asked that we work on that for now, and see what we can do once he has mastered that area.  I agreed readily, because that alone would take a month or more.  So every day we walked to the drop off point at the bottom of the school steps, I said goodbye to my older children, and then walked up the steps, into the school, and worked on taking steps closer to the hallway he would eventually need to travel down.  At first he screamed.  I was embarrassed because I didn’t know if the principal had explained what we were doing to the front office staff– the front office adjoins the lobby to the right of the school entrance.  But I pushed the embarrassment aside and focused on R, because if we could do this it would have a huge payoff once it was time for him to start school.  I would open the door, take just one step in with him screaming, then I would immediately praise him, turn around and take him right out.  The screaming faded to fussing, and I gradually added 2 steps, then 3, then 4.  Soon he was no longer fussing until the moment we stepped just a little too far out of his established comfort zone.

His IEP meeting was scheduled for 2 months before his 3rd birthday.  Two weeks before that, the school conducted his evaluations.  At that point he was comfortable in the school lobby, which we had been practicing, and the cafeteria, which was where we went every afternoon for parent-pick-up to get my older two kids.  The evaluations required us to visit one of the preschool classrooms however, and that was way beyond R’s comfort zone.  I had warned the team ahead of time, but I don’t think they understood how bad it would be.  After an hour of screaming and crying they agreed to conduct the evaluations at my home instead.  When the day of our IEP meeting arrived, we candidly discussed how crucial it would be to accommodate R’s transition needs.  They had all seen first hand what it is like when he has to enter an unfamiliar environment.  The team offered that the special education teacher (for the self-contained classroom he will be placed in) could begin meeting us at the lobby and work on taking him down the halls and to his classroom over the next two months.  Other team members chimed in that once he was accustomed to the sped teacher, they would like to begin joining him as well so that he can get to know them before his official start date.  We were very excited and grateful for their willingness to do this.  The sped teacher met us the very next morning.

For the last 4 weeks we have met each morning.  The teacher made R a book with large pictures of each part of the school he will travel, in chronological order, pictures of his classroom, and pictures of herself and his school therapists.  She opens the door for us, greeting R warmly, crouching down at his level, and works on helping him take a few more steps each week.  We decided to introduce a treat to make it more positive and enticing.  R loves chocolate chip cookies, so I baked dozens of mini, bite-sized cookies and put them in a container for his teacher to keep at school.  After he takes his steps, a little further each time, he gets his cookie, as well as plenty of praise and encouragement.  This last week he has really begun to gain some comfort and confidence walking down that first hallway.  Realizing that he can walk again and get another cookie if he likes, he has started walking down the hallway with his teacher 2 or 3 times each morning before we say goodbye and head home.  We have gone from spending about 3 minutes there each morning, to spending a solid 15 minutes.  Last week his school OT and ST began joining us as well.  He has had a few weeks to get to know the sped teacher, and they felt it was a good time to introduce some new faces.

And that brings us to yesterday, the first day that he completed the entire length of that first hallway, an enormous grin on his face and a bounce in his step.  I thought he would stop there, but to everyone’s delighted astonishment, when his teacher scooted around the corner a few steps he took the plunge and followed her around that corner, and out of sight of me, the lobby, and the exit  (which he normally makes a point of checking visually for security).  There were misty eyes all around, and at that point we had gathered a crowd.  The school nurse squeezed my arm and said “it’s like he’s a totally different child than we used to see!”  And I was just so happy that they were all getting to see the child I see every day.  The sweet, happy, cheerful little boy with huge dimples and an infectious laugh.

This was huge.  Yesterday was huge.  I am so proud of R.  He is so brave, and I love watching him meet these challenges and defeat them.  There aren’t really words for how proud I am of R.  But you know what else is huge?  This school.  This group of people going above and beyond to support a child that is not even their responsibility for another month+.  The special ed teacher and therapists are investing over an hour per week now working with R.  They have taken time outside of that to make him a picture book, to email me and consult with some of our other therapists to better prepare his program for when he starts.  We owe the principal great thanks for allowing us to do this at all.  We are also thankful to the front office staff for their kindness, tolerance, and support, instead of thinking of us as an annoyance.  Every way you look at it, this is huge.  And we are just so grateful.

Too Much of a Good Thing

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My sweet son licks everything.  Well, everything except food.  My little love, who only eats 3 different foods, licks absolutely every other surface.  The furniture, the walls, the rug.  Escalator steps are a big favorite, and we were once informed by confused mall security that going up and down the escalator over and over while carefully pausing to lick each step was, in fact, not permitted.  My favorite is when he licks my face, which is his version of giving a kiss.  His BCBA once commented “we can shape that,” meaning teach him to turn it into a regular kiss instead of licking, and I thought: Not gonna happen; I love my boy’s kisses.  My standard response when strangers comment on the licking is to smile and say that he’s building an immune system.  This certainly seems to be true, as R is rarely ever sick and hasn’t required antibiotics since he was a baby.

These days, R especially enjoys going outside to lick the driveway, the road, and a series of large, decorative boulders that line our street.  I can see that this brings him joy and helps him meet a sensory need.  I cannot help but smile when I see how his face lights up, how he runs to those special spots- knowing exactly where he wants to lick.  I love his giggle when he finishes licking one spot and moves on to the next.  I love how he dashes from boulder to boulder along our street, arms and legs bouncing with excitement, jumping on his toes and down again.  But today, as I followed him through this ritual, I noticed that there was some blood on his face.  Alarmed, I pulled him over to me to check.  I saw that his tongue was bleeding.  He was unbothered by this, eager to get out of my hold and continue to the next boulder.  But it was like a little stab in my heart to see that this thing he loves so much was making him bleed.  I don’t want to prevent him doing these things he is so  compelled to do, these things that he takes such pleasure in, but I don’t want to let him lick his tongue raw and bleeding either.  This is the hard part.  Helping him find safe limits while honoring his genuine need to seek out these sensations and use them to self-regulate.

Therapies

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I read the numbers on R’s assessment from Early Intervention (EI), and in his diagnosis report.  I don’t understand why the cognitive numbers are so low.  We had expected the low communication score, the low personal-social score.  Are they saying he isn’t smart?  I’m angry and defensive, worried and sad.  

“It’s because he’s just not interested in those things, not because he couldn’t do them if he really wanted to!” I tell my husband indignantly.  Still, I feel anxiously spurred to hurry up and choose therapies for him.  The psychologist recommended 35 hours per week of ABA therapy, but we have read things about it that make us feel uncomfortable.  It sounds like dog training.  It sounds harsh and rigid and unkind.  It sounds like they will try to change my boy, instead of supporting him.  I want to give him tools he needs to thrive, but I have no desire to make him appear NT.  

“ABA doesn’t have to be like that,” Clara*, R’s service coordinator and DT, tells me gently.  “It can be fun and play-based, and you can decide what the goals are.”  Still, I feel skeptical.  Our neighbors have a child with Autism too, and I ask her about their ABA program.  

“They are teaching her to clap instead of flapping,” my neighbor tells me eagerly, clearly feeling this is an excellent goal.

“Why can’t she flap?” I ask uncomfortably, not wanting to offend but not comprehending how this, of all things, is worth spending hours of therapy on.  

“Well it’s okay sometimes, I suppose,” she hedges, “but it’s not appropriate all the time; she needs to be able to do something more socially acceptable.”  I smile politely but inside I reaffirm my anti-ABA stance.  If this is ABA, it is not for us.  My husband agrees.  We choose Floortime instead, which we will have to pay for entirely out of pocket, unlike the ABA which would have been completely covered through EI for up to 35 hours per week. We can only afford 90 minutes per week of Floortime.  But coupled with the free DT, ST, OT, and therapy-group provided by EI we feel he is getting enough.  

 

It has been nearly 6 months. R is about to turn two.  It has been a pleasure to watch him blossom in engagement and interest in his environment.  Though eye-contact was never a goal, he has begun looking at us in those moments of perfect connection between us: when we are tickling him, swinging him through the air, blowing raspberries on his belly.  In Floortime we have learned not to try and lead an interaction, but to let him lead.  We copy him, we join him in whatever he is doing, which is usually stimming, running, or climbing.  In DT and ST we have learned to narrate everything.  “Up, up, up!” we say as he climbs the stairs.  “Down, down, down!” we say as he climbs back down.  Where he previously had no interest in toys whatsoever, he now enjoys examining toys that are identical but feature different primary colors.  Sets of blocks, or alphabet magnets, stacking rings, and so on are fascinating to him.  We discover that his favorite color is blue.  He will always hold the blue toy in one hand, while carefully picking up the other colors in turn, examining them and turning them over in his hand.  He carries something blue with him at all times.  But R has not made any progress in skills that would increase his daily quality of life, and this becomes increasingly worrying.  He has no means of communication at all.  It is not the lack of language that bothers us.  We have seen that there are many ways to communicate, and speech is not necessary.  But R doesn’t communicate in any way at all.  He seems to think we can read his mind, and becomes very frustrated when we don’t know what he wants.  It breaks my heart because I think he thinks we are arbitrarily denying him, when in reality we just have no idea what he wants.  He also still seems not to understand anything we say.  He will be thirsty and looking everywhere for his water cup, and I will say, “Here’s your water, R, water, water!” as I wave the cup in the air, but he never once glances up.  He continues to search where he expects it to be and begins to cry loudly that he cannot find it.  I must walk over to him and wave the cup in his line of vision right in front of his face, and then, only then, does R calm and grab the cup.

Besides communication, R also lacks adaptive and cognitive skills that would make his day more comfortable.  He cannot remove his own shoes or clothing, or help with dressing.  He cannot use a utensil and hates the feeling of wet or messy foods, which limits him to eating only dry finger foods.  He cannot open a lid to get to a stored toy or treat.  He struggles to understand that things move around and may not be where he expects them to be.  He also deals with a lot of anxiety in new places, and we are at a loss to help him learn coping skills.  I wonder guiltily if we should have given ABA a chance.  We never even tried it before rejecting it.  

 

One day I arrive with R to EI group but no other children show up from his group.  The group leader suggests that we join the group in the next room over, which is the drop off group.  She tells me there will be no other parents; the children in that group are there with their ABA therapists.  Curious, I agree and we move next door.  R is the oldest in his parent-child group, being about to turn two.  The drop off group is entirely two year olds, so for once he is among children closer to him in age.  I sit with R in front of some brightly colored shape sorter shapes.  He examines them carefully one by one, except the blue piece of course, which he holds in his left hand.  I look around at the other children and am astonished to see them doing so many things that R can’t yet do.  One child is playing with a toy barn, moving animal figures around, making the animal sounds.  Another child completes a puzzle, another is placing pegs into a peg board.  Some are talking to their therapists, others sit at the art table scribbling with crayons and gluing tissue paper.  I decide these children must not be Autistic.  They must be here because of some other delay.  Then I remember the EI therapist mentioning that these children are with their ABA therapists, not parents.  I look and see that every single child is with a 1:1 therapist.  I ask one of the EI therapists, who has sat beside R and is trying to engage him, “Are those all ABA therapists?”  

“Yes,” she says, and tells me the name of the company they are from, which apparently is one of the largest ABA providers to children in my EI catchment area.  

“So all these kids have Autism too?”  I ask, still trying to deny that this could be true.

“Yes,” she says.  And to my intense mortification, I promptly burst into tears.  It is the first time I have cried since or about R’s diagnosis.

 

When I get ahold of myself the EI therapist is saying comforting things, asking about our therapies, trying to be helpful.  I explain why we aren’t doing ABA, how conflicted I have come to feel about whether we are making the right choices or not.  All I want is to do right by him, but I feel I am stumbling around in the dark, winging it.  She suggests I sit and observe the ABA therapists in the room, and consider that perhaps it isn’t what I thought it was.  I do.  I sit for those two hours and watch.  The ABA therapists do not seem very different from my Floortime therapist.   They are cheerful, kind, and playful.  Nowhere is the villainous creature my mind had conjured based on stories I had read about abusive, old-school ABA.  I go home and have a long talk with my husband.  The next day we call the ABA company that the therapists I observed work for.  We tell each other it won’t hurt to try, that as soon as we see something we are uncomfortable with we can stop.  We decide to take a chance.   

 

*name changed to protect her privacy