The Advice I Wish I Received

“What we have here is a spectrum disorder.” That is how the news was delivered to me as my highly anxious almost 3 year old was itching to get the hell out of the evaluation center. The next bit of insight was, “I think whether you do behavioral therapy or Floortime doesn’t matter, but you just need to do something intensive with a lot of hours. It is a good sign she has language. She will need to have therapy in a very calm and quiet environment.” That bit of advice was followed by, “Remember, you know her best.”

With that, we were out the door and I was looking dazed and confused, because of course at the time I did not feel like I knew my kid at all and had no idea what to do with her. Their advice was minimal and so superficial it was basically worthless. But then again, we were at a center where they were behind schedule. Many more kids to diagnose were sitting in the waiting room. At least they were sitting, mine was screaming her head off, so much my mother had to push her in her stroller in the hall to try to calm her down.

Did they know she was different from most they diagnose from the start? Were they hinting at that in their “advice” … that piece about the “calm and quiet environment” haunts me to this day. Yes, she has more anxiety and sensory issues than many kids I have met on the spectrum. Did I just miss the hint? Then I tell myself, there was no way I could have known that her anxiety and sensory issues at the time would predict she would be a slow progressor. And there was no way to know that her personality makes really pushing and forcing her to do things a total backfire….that meeting her where she is and slowly expanding her was the answer.

What advice do I wish the evaluators would have given me?  What could have made a difference? Well, this, for a start:

1. Your child is on the spectrum, which is very wide. Some kids progress fast and others progress more slowly. There is no way to really tell what your child will do, so it is important to meet her where she is and help her make small steps forward. Try to remain in the present, because freaking out over an unknown outcome is not going to help her.

2. Co-morid issues are possible. Make sure all underlying medical issues are understood and consider how they can factor into behavior. (Note: In our case, dyspraxia and oculomotor apraxia ended up playing a huge role in her development.)

3. Because of her anxiety and sensory issues, pushing her too hard can backfire. You must learn to read her and understand her way of thinking and talking, and you will become her interpreter to help others understand her. Continue to listen to your instincts and use careful observation to hone in on her subtle cues. Floortime is helpful, because it teaches you to meet her where she is and slowly expand her to get her ready for interacting with other people. Most Floortime therapy is private and not covered by insurance, unless it is integrated into occupational therapy, speech therapy, and behavioral therapy. Be aware that many therapists say they are proficient in Floortime techniques, but they are not.

4. There will be many therapists involved in your child’s care, so insist on team meetings to keep everyone on the same page. On your child’s early intervention (3 and under) and school-based (preschool to school years) teams, she will have an occupational therapist (to help with fine motor skills, activities of daily living, and sensory issues), physical therapist (gross motor skills), speech therapist (articulation and general speech work), and behavioral therapists (help with coping and a variety skills which often overlap with the other team member’s goals). It is very easy for confusion and inconsistency to happen with so many team members, so insist on frequent communication between team members.

5. The bulk of early therapy will be performed by behavioral therapists and their aids (verbal work and academic readiness), because applied behavior analysis (ABA) has the most data in the literature and therefore is funded by school districts and insurance companies. Behavioral therapists can help with strategies to control anxiety (for example, use first we do this, then that language to manage expectations) and use developmental maps to form goals. You must decide what types of behavioral therapists you want…those who do more natural therapy (look up pivotal response, Denver Model) or those who do more rote drilling. In current literature, the field is tending towards more natural, play based and relationship based therapies integrated with the behavioral therapies (look up Floortime and RDI for relationship based therapies). In reality, behavioral therapists who are proficient in relationship based therapies and natural ABA are hard to find. Ask tough questions and don’t back down.

6. When something isn’t working, move on. Don’t be afraid to fire people. You are the parent and you make the decisions.

 

 

A Note to Myself 3 Years Ago

Dear Self 3 Years Ago,

You just received Beth’s autism diagnosis and quit work to stay home with her. I know you are depressed and anxious about your little girl’s future. And to be honest, life as you know it will never be the same and things are going to get a whole lot worse before they get better. I don’t envy the road you will walk over the next 3 years, but you will come out the other side a better parent and a stronger and more compassionate person. You will let go the “shoulds” and “what ifs” and finally learn what true acceptance means. To help you on this difficult journey and to ease the path a bit, I have a few tips for you below.

You’re Welcome,

Yourself in 3 Years

  1. What Autism is NOT is Very Important. Contrary to what many believe, these things are not part of the autism diagnosis definition, and in many ways they are more important for understanding Beth and how to help her: low tone, dyspraxia, motor planning impairment, ADHD, anxiety, sensory processing disorder, and visual scanning/discrimination impairment. Look these terms up and study them at length. Several therapists will tell you Beth’s “autistic behaviors” must be ignored or controlled through bribery and they will not look deeper to the core issues. Do your homework and don’t accept that there is no reason for behaviors that get in the way of Beth’s functioning. She is trying to tell you something.
  2. Embrace your sensory kid. Careful observation and supportive parenting will take you a very long way with this sensory kid. It is not about a sensory diet, it is about a sensory lifestyle! Beth experiences her world by her senses in a very unique way, and she seeks out and avoids certain senses. It may help to think of her as still in the exploratory developmental phase in many ways. But don’t underestimate her, because her sensory seeking and avoidance will change often and mature with time. It is also hard for her to use all her senses at once and integration will come slowly, but it will come! 

    Eating Snow

    Eating Snow (Take my advice and just give her a spoon, because this will be the dominant snow activity for a long time.)

  3. Just Do Something. You don’t know where to start and you are afraid to fail, but trust me, dive right in and just do something. Once you start, whether it be a new play idea, an educational session, or an outing, you will find your way and there will great value in the ideas that do not work out as you planned. If Beth resists your attempts to interact with her or teach her something, divide the task or goal into smaller concrete steps or go back to a previous developmental step to work on foundations. Don’t be afraid to put an idea or activity on hold and come back to it. This is not failure, it is giving her time to develop on her own path and you time to process the attempt and come up with new ideas. Also, if Beth shows interest in something, don’t be in a rush to move on to the next level. Just enjoy interacting with her where she is for a while and look for signs of readiness before you try to add more complexity or go onto another developmental goal. For the most part, development will come in very small expansions on familiar ideas.
  4. “Well, at least my kid doesn’t…” Take the advice of Bob Newhart and just stop it with these statements, because most likely she will do these things (https://www.youtube.com/watch?v=Ow0lr63y4Mw). She is not doing it now, but she will bite, kick, scream, meltdown, etc. but luckily for you she eventually grows out of it for the most part (for now, never say never, you still have the teenage years coming). The reasons for the aggression included communication delays, boredom, demand was too high for tasks, and extreme fatigue due to sleep issues. Also, she will be a big time stimmer, especially flapping and repetitive vocalizations in interesting voices. The stims will emerge over time and it shock you at first, but you will grow to accept them and learn how to use them. Her different stims will reveal her inner state and give you nonverbal clues to show when she is happy or uncomfortable (for example, sick, in pain, or needs to have a bowel movement). You will also learn how to use stims to motivate her to do non-preferred things and to help her cope in stressful situations.

    Flap Happy Kid

    Flap Happy Kid

  5. Sleeping. Brace yourself and pass the coffee. You will try melatonin with little success. You will try various locations and beds configurations, such as sleeping on the couch from ages 3-4, in a pack and play and a bed tent at 4, and finally sleeping in a large bed in the middle with several pillows surrounding her to prevent her from hitting walls when she flails her arms in her sleep. Foam board on her bedroom window to block out light and sound and the right noise maker helps. Exercise helps. But the biggest help is time. She will start sleeping much better at 5.
  6. Move It! She will have enormous difficulty moving from point A to B and moving her body. This issue is core, so it must be worked on every day. Music and imitation will be a huge help for her motor planning development. Also, hide her favorite mouthing items (edible toothpaste, floss) in various locations of the house and work from staring at the item a foot away to hiding it in separate rooms and using more and more complex hints. Any movement should be cherished, so welcome large therapy balls into your home, and encourage “traditionally forbidden activities” such as climbing on furniture and  jumping on the couch/bed.

    Yes, you be estatic when you find her hanging onto spindles while standing on the bac of the couch.

    Yes, you be ecstatic when you find her hanging onto spindles while standing on the back of the couch.

  7. Potty Training. Get out the Clorox wipes, because this is going to be a long, messy haul! Even now she struggles with understanding her potty signs and usually runs to the toilet only after the urge is dire. You made a lot of progress in tiny steps (first pee and poop on the little potty in front of the TV, then pee in the toilet but poop on the little potty in front of the TV, then you discovered she relaxes with certain visual stim like the iPad and marble run and used that to relax her before darting off to the big toilet for BMs, and now we are still working on requesting to go potty in public places). Through elimination diet you will learn she is sensitive to soy, almond milk and has lactose intolerance, and elimination or reduction of these foods will make BMs more comfortable for her and reduce the number from 4-5 to 1-2 a day.
  8. Respect the Physical Issues Behind the “Behavior.” Your biggest regret will be that you didn’t have PT and OT come watch the behavioral therapists while they worked with her and while she was at preschool. She can’t sit on the floor and in certain chairs because of low tone, so get her a fully supported chair, give her breaks, and let her stand at a table to work until she is ready to sit. She can’t pay attention to work presented to her because of visual scanning issues, so reduce clutter, use slant boards and recipe book holders, and encourage her to look across the whole field by sweeping across or circling the region she needs to attend to with your hand. She has tremendous difficulty with all motor planning, so reduce or eliminate these barriers, even going so far as to rest her hand on the table in front of a picture when you want her to point because it takes so much effort to raise her arm and then move forward. Because of physical issues, attending to tasks will take enormous effort, so short sessions are a must (at age 5 she is doing 12 minute sessions and uses a visual timer).

    This is where you are headed - distraction free work area, smooth backed chair with full support and foam tape on the floor to prevent chair from slipping, table at a good working height.

    Future work space: distraction free work area, stands for ipads and books to help her read more easily, smooth backed chair with full support and foam tape on the floor to prevent chair from slipping, table at a good working height.

  9. Developmental Trackers Like the VB-Mapp (http://www.marksundberg.com/vb-mapp.htm) are Just Tools, They are NOT… a replacement for common sense, critical thinking, and good teaching. Because of the VB-Mapp, there is a time limit on how long the therapists will give your child to answer questions due to the core belief by behaviorists that taking a long time to answer is a behavioral issue. They will cut off your child’s thinking and feed her answers using errorless teaching, which she will grow to hate because she has slow processing and motor planning issues. You will argue that your child just needs more time, but you will compromise how long to wait, which will be a big regret. The therapists will want to work on all deficits, but use her strengths (naming colors, letters, numbers) or she will lose the skills and her confidence. The VB-Mapp advises that “barriers to learning” are mostly behavioral, which is wrong. Beth needs support due to all the physical challenges stated in number 8 above and it is the reason behind many behavioral “issues.”  Do not let the therapists use the same language with Beth over and over, because she has trouble with motor planning, so when she finally learns a language pattern it has a tendency to get stuck. Be very wary of the goals in the VB-Mapp that have “or” in them, because it will be the cause of missing core issues, such Beth’s face blindness. Also, read the details in the secondary skills tracking list even if it is not required because Beth meets the milestone on the primary list.  Otherwise, things like teaching yes/no will be missed. Fight for putting yes/no on the IEP even if the other therapists do not want to because it will “lead to less words.”  Yes/no is empowering for your child and any language that is empowering must be taught first. There are many other issues you will have with the VB-Mapp, so be wary!
  10. Play Will Come Slowly and Will Be Unique. For the love of God, DO NOT GIVE AWAY HER FAVORITE BABY TOYS AND “STIM” TOYS! She has an emotional attachment to certain toys and she will ask for them when she finally has the words and you will end up buying replacement toys. Let her dump things and set out invitations to play on tables, because it is the only way she can find things with her motor planning issues. Play games where she searches for her favorite edibles among the toys so that she can find where her toys are located. Practice taking toys out and skip clean up until she can manage it. Eventually when some of her sound and spinning stims calm down, you will be able to use them to expand her play. Before she can play, she needs to be able to use her hands. Using her hands is difficult, so incorporate hand use into her favorite activities, like using tools while cooking, squeezing colored seltzer water from condiment bottles into other containers on the light table, opening up containers to get her favorite foods and drinks, flushing toilets to watch the spin, and using a gum ball machine with a twisty ramp dispenser to watch the gum ball spin down. Interactive play will start at 5 with activities like ball play, balloon play, interacting on trampolines, singing songs, and marching while playing instruments, but everything you do with her up until that point is a foundation for future play.
    Turning the (Very Tough) Handle on the Gumball Machine

    Psst! She is motivated by the gum ball spinning down the twisty slide!  Use her spin stims to motivate her!

    Take note when she says "big bubbles" when you blow bubbles for her. She means it, and it is a huge opportunity for expansion of play!

    Take note when she says “big bubbles” while you blow bubbles for her. She means it, and it is literally a huge opportunity for expansion of play!

  11. Dressing. Dressing herself will come very slowly. Start with the things that are easiest for her, then move on. Independent dressing will unfold like this (from what will be mastered first to last): 1. taking everything off, 2. pants on, 3. socks on, 4. underwear on, 5. coat on, 6. shirt on, 7. shoes on (depending on the shoes, some are easier than others). The order is dictated by her motor planning, low tone, and body awareness, which impacts her coordination, balance, and ability to support herself while dressing. Teach her to find the support she needs while dressing (for example, leaning against a wall to put on underwear or sitting on the couch to put on socks).
  12. Find Your Peeps. Your peeps will be found on outings, at special needs music classes, and at special needs events you set up through meetups and closed FB groups. Online support will come from blogging, your Fumbling Thru Autism Facebook page, and the pages of special needs parents with a positive outlook. The most insight about your child will come from people who have autism and blog and/or write about their experiences (Judy Endow, Stephen Shore, Temple Grandin, John Elder Robinson, Daniel Tammet, just to name a few).
  13. Believe in Yourself. You will not believe me when I tell you this, but Beth will hit age 4 and you will decide that whatever many of the therapists are doing with your child is not working out, so you want to try some things on your own. You will decide to homeschool her for preschool at age 4 and Kindergarten. Several people will think you are nuts. But there is nothing wrong with letting your child learn to navigate the world, use her body, integrate her senses, gain more language to express needs, and cope better before she is expected to succeed in academics in a classroom setting. Isn’t that what we do for many young children and why should that be different for the child with delays and uneven development?

    Making letter A bread. Homeschooling is not as scary or crazy as it seems Mom, so relax!

    Making letter A bread. Homeschooling is not as scary or crazy as it seems Mom, so relax!

  14. Forgive yourself. You will get impatient, frustrated, raise your voice, miss cues, expect too much, expect too little, miss things, try things that don’t work for too long, etc. That is life. Forgive yourself, say sorry to your kid, and move on. You guys have work to do and a life to enjoy.

When “I Just Don’t Want My Kid to be Labeled” Hurts

The first time I met a parent who didn’t want to talk about her child’s autism was at Beth’s preschool. The parent had a child who was a year ahead of Beth in the 4-year-old classroom. Her child had some subtle and brief repetitive hand movements, seemed to zone out sometimes, and I noticed how he answered questions in a very factual way with memorized scripts. He didn’t need a full-time aid to go to school like my child did, but clearly he was on the spectrum and on the “high-functioning” end. So, I tried to talk to the mother. I opened up about my child’s autism and our home program and got back absolutely nothing in return. I was confused, but I still tried to talk to the mom as we waited in the hall to pick up our children. And then I just gave up because it was clear she didn’t want to acknowledge our children shared some similar traits, let alone use the “autism” word. This parent was part of the “I don’t want my kid labeled” crowd.

Fast forward to the end of the school year when I decided the therapy program we had wasn’t really working as I had hoped and we were Going It Alone (http://wp.me/p2OomI-3). We were at the end of the school year, I was about to say goodbye to her last therapist, and I was sitting watching my child struggle through the end of the year class production (songs, fingerplays, etc…all of which she could not do). At the end I could barely contain my tears of sorrow, and I look over at the mom of the boy who had autism and she didn’t want to admit it. She was high-fiving her husband and literally doing a fist pump. We locked eyes and she knew that while it was a great day for her because her child did well, it was not a great day for me. And then she looked away. I thought, good for you honey, you think you did something magical for your kid and you won some sort of game that he can pass? And, I admit, I thought, fuc* you. Thus began my struggle with the “high functioning” part of the spectrum.

For a long time I have struggled to accept that the high-functioning kids and my daughter really have the same condition. And I have had feelings of resentment and anger when some parents complain about their child’s problems, which quite frankly seemed minor compared to my child’s struggles. But I have been fortunate enough to spend time with parents of high-functioning kids and over time I have been able to gain empathy.  Too advanced for the “autistic support” classrooms, the high-functioning kids are put with neurotypical children and somehow have to manage. I have personally witnessed high functioning kids trying desperately to interact with their neurotypical classmates, and I have seen them shunned by their peers because of their uniqueness. It is painful to watch, and I get where the parents are coming from now.  So, I thought I had made significant strides towards acceptance of high-end of the spectrum. Until yesterday.

I was at the playground, helping my child stay alive (she likes to climb down parts of the play equipment that she should climb up and the last thing I need is a bad fall and an emergency room visit). I passed by a mom saying, “She has social issues and other issues but I don’t want her labeled.  I mean, she will beat this thing, and then…” I got a flash of anger that took me back to the high-fiving “this is a game to win” mom back in Beth’s preschool. Here are thoughts that went through my head: Lady, you have no idea what a real diagnosis is, what autism is, this is not a MF game, your kid doesn’t have anything or else it would be obvious, and on and on. And then I took a deep breath. There are kids with high-functioning autism that really need help, so why am I so angry? What is the real issue here?

And then it hit me. For a mom to not want her kid labeled with autism means she does not accept my child. It means that autism is such a horrible thing to her that she would never want to even fathom giving her child such a label. Ouch, that hurts…it cuts me really deep. The mom’s inability to accept the autism label triggered an anger in me that is below the surface waiting to come out. The anger was too strong and out of proportion with the situation, which can mean only one thing in autism land. Grief of course (http://www.abilitypath.org/areas-of-development/delays–special-needs/states-of-grief.html). This is my issue, I own it, and I need to work through it. But at the same time, is it okay to say, “I don’t want my kid labeled” and treat autism like a game to beat instead of saying “My child has some challenges, but I don’t think it goes to the level of needing a diagnosis.” From my point of view, the former is discriminatory and it is hurtful. I work very hard to understand the high-functioning end of the spectrum and to squash down my own jealousy and resentment, so I expect that parents of kids on the high-functioning end should work to be respectful of my child who works very hard every day to make small gains, who could not pass in a typical class by any stretch of the imagination, and who most definitely has autism.

See here for part 2: https://fumblingthruautism.wordpress.com/2013/10/21/when-i-just-dont-want-my-kid-to-be-labeled-hurts-part-2/

The Sensory Piece

Beth, almost 3 years old at the time, was screaming her head off at her psychiatric evaluation. The clinician just gave me a her diagnosis. “It” was autism. She told me we needed to do some kind of intervention right away, either Applied Behavioral Analysis (ABA) or Floortime. I told the clinician about Beth’s sensory symptoms because I had been reading books about sensory integration therapy, and the clinician said, “yes, there is a sensory piece.” And that was it. The end of the advice on therapies.

Since then we have fumbled through dealing with the “sensory piece,” which has turned out to be the biggest challenge for us, and, quite possibly, THE underlying mechanism for what has lead my child’s autism traits and developmental delays. It has taken me two years to truly grasp Beth’s sensory issues and settle on an approach to parenting my “sensory kid.” In this blog post I will give a background on common sensory challenges in autism and typical sensory therapies. Also, I will provide an account of our own experiences with sensory evaluations and therapies, and describe how we opted out of formal therapy and took our own approach for awhile.

The Sensory Piece – What is It?

It has been well documented by people who have autism that they sense the world differently than “neurotypical” people (i.e. people who do not have autism or sensory processing disorders). This leads to behaviors that are often misunderstood by neurotypical people. Here are just a few examples, as explained by people with autism who have sensory sensitivities:

Sensory Therapies and the Contraversey

Here are two sites and a good book that explains the available sensory integration therapies and sensory “diets”:

In regards to effectiveness of the above therapies, the American Academy of Pediatrics (AAP) recently concluded there is insufficient evidence for the efficacy of current sensory therapies. Also, the AAP recommended that a separate diagnosis of Sensory Processing Disorder should not be used, and, because of the lack of evidence, pediatricians should help parents monitor effectiveness. They also had this line in the statement: “Occupational therapy with the use of sensory-based therapies may be acceptable as one of the components of a comprehensive treatment plan.” The news of course ran with the tag lines that the sensory therapies were “not effective” and “unproven” to sensationalize the recommendations and attract readers. The way I read it, the AAP is acknowledging that many people think the methods have worked for their children, it is just the methods haven’t been proven. Here are the main postings discussing the AAP recommendations:

The AAP recommendations lead to a lot of talk about what is behavioral versus what is sensory. It is a tough distinction with young children who have autism, because behavioral, communication, and sensory issues mix together and the children are melting down so frequently. This is a good article that urges parents and clinicians to try to understand the sensory issues underlying the behavior:

Some people believe an error in sound processing causes sound sensitivity and other symptoms in people who have autism, and that a listening therapy program can help. Here are a few resources that describe listening therapies:

As with sensory integration therapy, the AAP does not recommend listening therapy due to lack of efficacy:

So, as parents of a child who has sensory challenges, we have to make difficult decisions on the above therapies with insufficient efficacy data, which means we each have to follow our instincts to determine what is best for our child. I have known many therapists and parents who swear by the above therapies, and I respect their opinion and choices. I agree and embrace that my daughter has sensory integration and sound processing challenges, so in that regard the background and stories I have read on the above therapies has been enlightening. In the end our decision was to not pursue formal sensory integration and listening therapies, but first we went through an evaluation and tried a few sensory integration sessions before we came to that decision.

Our Experience with Sensory Evaluations and Therapies

Despite the AAPs recommendation that Beth’s pediatricians should help monitor her sensory therapies, her pediatricians knew little about sensory therapies. We were on our own, fumbling to figure it out. Eventually, in a desperate attempt to help calm my daughter’s anxiety, I asked our occupational therapists and behaviorists about various sensory therapies.  We tried therapeutic brushing, pressure vests, and a friend made a weighted blanket. We tried various squeezes and massages. All of these things were supposed to calm Beth, but I didn’t see an effect. If anything, the attempt to use these things stressed her out more.

At about 4 years old, we took Beth for an evaluation by an occupational therapist with expertise in sensory integration, and her sensory diagnosis was “mixed sensory modulation profile” with the following breakdown:

  • Auditory (response to sound): over-reactive
  • Vestibular (response to movement): under-reactive, with a low threshold (i.e. she craves movement, but can’t handle much input).
  • Proprioception (response to joint sense): under-reactive
  • Tactile (response to touch): mixed reactivity
  • Visual (response to sight): over-reactive
  • Oral (response to sensations in the mouth): under-reactive (mouths frequently)

I would say the above was a fair assessment, but I can name several exceptions in each category. The therapist recommended a combination of sensory integration therapy, listening therapy, and Floortime (play based, child-led therapy). We said yes to the Floortime (parent-based with monthly consultations, through the Play Project), but held off on the sensory and listening therapies.

Several months after starting the Floortime therapy, we tried sensory integration therapy with an experienced occupational therapist. After a few sessions, the therapist convinced me to put headphones on Beth for listening therapy, which greatly agitated her. The headphones combined with the therapist trying to push Beth’s legs back into a swing as she tried to escape led to disaster.  Things were way out of hand at the session, so I took Beth to the bathroom to have a break. There I was with Beth in the bathroom as she was attacking her own arms by biting them. She didn’t break through the skin, but almost, and it was the worst self-injurous behavior I have ever witnessed with her. I stormed out of the occupational therapy center shaking with fear and anger and never went back.

One Year Later, Progress and Next Steps

Over about a year’s time, I let Beth guide me on her sensory adventure without agenda. My heart told me this was the best way for Beth.  Now she is jumping, crawling, climbing, spinning, and running like the wind. Her oral mouthing issues have improved considerably, but they are still present. We visited a local special needs gym recently and Beth absolutely loved it….jumping, running, and climbing the whole time. It was a HUGE difference from 1 year ago and I almost cried to see her have so much fun in a sensory gym.  Beth’s auditory issues are largely better, and I have discovered ways to help her with her sensitivities and use her auditory preferences as an advantage. I use no specific “sensory diet.”  Since I homeschool, she gets doses of physical, tactile, and oral input throughout the day upon request, which really works well for her. Beth did not like the weighted blanket when she was young, but she took over my heavy synthetic down comforter this winter and started sleeping through the night. There have been many discoveries like this we have made and I will write more on our sensory approach with Beth in the next post.

But we still have a long way to go, and I would like someone with expertise in occupational therapy to help guide us. For the next step, I am on the hunt for a occupational therapist who works out of a gym who will do Floortime with Beth. It will take a very special person to recognize Beth’s signals and let her lead the way. I want someone who will provide Beth opportunities for slow expansion and who will treat me as partner by giving me creative suggestions to use at home. I have a lead on a possible therapist, I am pursuing it, and I am hopeful.

The Letter

While searching for some documents for Kindergarten (more on that in a later post), I ran into a letter that I wrote to Beth’s first preschool teacher.  It was a blast from the past.  Thankfully, since I am learning to live in the moment and accept Beth for the wonderful little person she is, I moved on with my day rather quickly after an initial reaction of shock and sadness.

Here is the letter written to Beth’s preschool teacher, Sarah (name changed to protect privacy), when Beth was about 2.5 years old. It was written before diagnosis and before our lives would change in ways we could not comprehend at that time.  My thoughts as I read this letter yesterday is shown in italics.

Dear Sarah,

Here is some information that may be helpful for Beth’s transition to preschool:

Previous Caregivers: I stayed home with Beth from birth to 6 months, then I went back to work full time.  Beth had a caregiver from age 6 months until about 2 weeks ago.  Our relatives from out of town have been covering the gap in care until school starts.  In the past 4 days, we believe we are seeing signs of increased stress due to the transition (clingy behavior, sleeping and eating problems, more anxiety in social situations).

So, the anxiety was already showing and we were worried enough about it to write this letter.  I had forgotten that it was so obvious, but we tried to accept Beth for who she was and we tried not to worry about it.  We were so hopeful that school would help Beth with her anxiety, especially around other children.  We also hoped school would help her with flexibility. The school was the best we could find, with acres of grounds, animals to feed, many opportunities for messy play, etc. We had hoped she would adapt after a short transition period. But after 2 weeks, the teacher called us in and said she highly recommended a developmental evaluation.  She felt our daughter was in distress at school and could not cope.  In her words, “I am very worried about her.  Very worried.”  We were in shock. 

Home Life: We don’t watch TV at all and we go outside as much as possible, so Beth feels most comfortable and happy when she is outside.  Beth’s favorite outside activities are the water table, swimming, going to local farms, visiting pet stores and zoos, the swings, and running outside.  Her favorite inside activities are books, music, and painting.

I wanted to let the teacher know that we were a different kind of family, so maybe that was why Beth was different (who the heck watches no TV at all…we do watch it now, but we were trying so hard to be perfect parents back then). Also, I wanted the teacher to know how to calm Beth with her favorite activities. I was worried about how Beth would cope, and I hoped that the school and this very experienced caregiver would have the magic touch to help Beth expand and grow. But when I picked up Beth from school, she had a look of desperation on her face and she would scream “Go home, go home, go home!” She looked so very tired, miserable, and sad.  I thought she would eventually adapt, but it never happened.  

Socialization:  Beth is our only child, but we try to expose her to other children whenever possible at informal social gatherings and organized toddler classes.  Beth has taken many toddler classes, but she loves music classes and unstructured gym classes the most.  Beth barely notices kids her own age, but she loves older kids.  Beth often seems stressed in new social situations with kids and/or adults, especially when the new people are many and in close proximity.  Recently, her reaction to these new social situations is to run away, or, if indoors, to scream to go outside.  This has been a challenge, so we are a little nervous about her transition to school.

Translation: We wanted the teacher to know we had done everything we could think of to socialize Beth.  We were out of ideas and we needed help.

Sleep: Beth sleeps about 8-9 hours a night and she very rarely naps.  if she naps, it is while riding in the stroller or car in the late afternoon (3-4 pm).

When we had our introductory meeting with the preschool, we told them Beth did not nap.  They assured us she would and they had many tricks to make it happen.  She never did nap there. Beth would pace back and forth filled with stress while the other kids were sleeping on the floor. I had no idea that sleeping issues would get worse after this and how tired we would all be for so long. But now, as of the last few months, Beth is sleeping 9-11 hours a night and if she wakes she goes on the potty and then puts herself back to sleep. I am so grateful that she has finally figured out how to sleep as much as her body needs and how to put herself back to sleep.  

Potty Training: We started potty training about 2 weeks ago. She rarely states she wants to go to the potty, but sometimes goes to the bathroom door when she needs to go.  She will only use the small seat that is place on the toilet and would not go on the separate potty.  We use chips as a reward.  We are open to any approach during the transition to school, including using diapers, and any changes to the approach we have taken.

I put potty training at the end of the letter, because I considered it the least important point. I had no idea that we would be potty training for years.  It has been a long, slow process.  But we are in the final stretch, and for the first time Beth’s little potty stayed upstairs all last week unused because she used the toilet full time.  I feel lucky Beth has just enough body awareness and planning ability to make potty training possible. 

Let me know if you have any questions or concerns regarding the above.

Thanks, Tammy

Oh yes, she had concerns and she let us know about them 2 weeks after school started.  And our lives were never the same again.