Just Imagine

As the parent of a child with developmental delays, I often get anxiety over every missed milestone. It started early: When will my daughter roll over? When will she sit up? And it continues today. I go down the rabbit hole of Google searches and lose sleep over each missed milestone, searching for solutions and comfort. When she didn’t engage in imaginative play by the age of 2, my response was no different.

I saw that my fellow moms of young toddlers were hiding holiday presents so their little ones wouldn’t find them. Mine were sitting on the floor in the hallway, unwrapped, and my 2 year old would pass by them without a second glance. Birthday presents from her first year were still sealed in boxes because she had no interest in toys.

Her therapists urged me to play with her and help develop her imagination. I did. And guys, I am not that great at this stuff, but I cooked pretend food like it was my job, and I called on my childhood ventriloquism skills to give voices to all the dolls and stuffed animals my daughter had. Despite my impressive ventriloquism skills, she never engaged and seemed unimpressed by my efforts, but I persisted. One day, she picked up the toy phone out of her kitchen set and held it to her ear. I am not sure if anyone has ever been praised so enthusiastically for holding a toy phone to their ear, but my daughter got the equivalent of a standing ovation at the Oscars.

By the age of three, typical children will be fully engaged in imaginative play and creating in-depth stories for their toys. They play more independently and even mix toy sets together, for example, Spider-man may come over for tea with Anna and Kristoff. At three, my daughter was doing some imitation and would copy the scenes I had created, but she was more interested in lining up the toys and reciting their names, rather than actually playing with them.

My daughter’s lack of imaginative play became more apparent at school, and I was genuinely worried. She knows who the Paw Patrol characters are because of her peers, but we have never watched a single episode. That’s right – I have a 3.5 year old and we have never watched a single episode of Paw Patrol! No need to be jealous though, because what we do watch is the same episodes of Barney, over and over and over and over and…well, you get the point.

The best part about working so hard with your child to reach milestones is that when they do reach them, it’s an incredible victory. It was only three months ago I took my daughter on a playdate to the Playmobil Funpark where she mostly marched around singing to a piece of plastic fence from the farm table. When we returned to the Playmobil Funpark this weekend, she was engaging in imaginative play with the toys around us. In April, she was singing and dancing and trying to put herself in places she shouldn’t have been. This weekend, she was actively creating scenes with the toys and pretend people. Her imagination was on full display and although it may have arrived late, it was beautiful to witness. The Playmobil place is a place I can’t imagine you’d see many moms tearing up in (unless they’re at the cash register), but if you do see a mom tearing up there, maybe this is why.

Check out some of our magical moments here:

Some tips to help develop your child’s imagination:

  • Find toys that replicate the real thing. My daughter started pretending to cook with her Melissa & Doug silverware and utensils. I found an old flip-phone (I am aging myself here) laying around, and my daughter loves to play with it; the same goes for old wallets and bags.
  • Use toys your child shows an interest in. My daughter loved Matchbox cars, so we started with simple races. Now she creates voices for the cars and they do more than just race across the kitchen tile.
  • Keep it simple. Start with just pretending to pour pretend water or eat pretend cookies. If your child likes to push buttons and make things work, employ toys that do just that. Slowly introduce items that may not be realistic like a unicorn eating a pretend cupcake.
  • Play. Play. Play. Get on the floor and play with your child, even if they don’t seem to show any interest. Keep playing. Stay imaginative and always encourage them. When you thought your child was going to pretend to eat the plastic pizza, but instead uses it as a steering wheel and starts singing “The Wheels on the Bus”, get on the bus and go for that ride with them.

 

Now serving fresh imaginations!

Concealing an Invisible Disorder

Someone recently asked me if I ever try to conceal my daughter’s sensory issues or delays. The simple answer is: no. That said, I don’t make announcements about it either. Her disabilities are invisible. When you look at my daughter, she looks like a typical three year old. She may even smile at you, and if she really likes you, she might call you “Poopie” as if you are old friends. Trust me, it’s a term of endearment.

There are days where we go in and out of stores, museums, and parks and not a single person would ever know that my daughter is delayed or has sensory processing disorder. They may see her singing to a stick and think she is just a quirky three year old, not realizing this is something she obsesses over and has been doing for over a year. They would never guess that at one point in her life, we wondered if she would ever speak. There are days when we are out and stop to have a snack, and my daughter starts rocking against a bench and singing to herself. Passers-by go from smiling to looks of confusion: Why is my daughter rocking? Why am I not stopping her?

There are days where we go through an entire zoo while she sings to a bent stick in her right hand and marches the entire time. Some days, there is no concealing that she does things that most typical three year olds don’t. Other days, her “quirks” are easily dismissed as normal toddler behavior.

My daughter is nearing the 4 year mark, so up to this point there has been no need nor perceived pressure to try and conceal her disorder. If she needs to rock, I let her. If she wants to bounce, she bounces. I have never discouraged her from doing what she needs to do to self-regulate. I have worked with her to make sure she engages in these activities safely, but beyond that, she does what she needs to do and I don’t try to stop her. She has been at the same daycare for over 3 years now, and the teachers and other children don’t think twice when she rocks, bounces, or even bangs her head on her cot at naptime. The headbanging is gentle and rhythmic and was evaluated by her behavior therapist who felt it was safe and should not be discouraged.

Although I don’t hide my daughter’s delays or sensory disorder to people we don’t know, I don’t go around announcing them either. So, who do I tell? I make sure all her doctors and therapists know what is happening with her. I answer the questionnaires about what she can and can’t do with honesty, even when it hurts to know she isn’t where most kids her age are with certain skills. When I enroll her in extracurricular activities I speak with coaches and instructors ahead of time to see if it will be a good fit. I keep family and friends apprised of her regressions as well as the progress she makes. I’m not afraid to brag when she accomplishes something, even if it is something most kids her age have been doing for a year.

As she gets older, her quirks and behaviors might be less accepted. Will I encourage her or attempt to persuade her to do these activities privately? No. If she chose to do them privately, will I discourage her? No. It is probably easier for me to decide on these things now when we aren’t entrenched in the emotions of being bullied or made fun of at school, but my goal is to give her the confidence now to make these decisions for herself in the future, knowing that she will always have my support.

 

Is it Autism

I have spent three years wondering if my daughter’s sensory issues, language impairment, and developmental delays were all part of something bigger, like autism. When those thoughts came to mind, I would push them away, because it didn’t matter since she was already getting all the services she would be getting if she had a formal autism diagnosis. On the M-CHAT, my daughter scored as “high risk” for autism. But even with a high risk score, it didn’t mean things wouldn’t or couldn’t change. She was only 2 and constantly making huge strides in her development. I was sure that in another year, her “high risk” would become “low risk.” When she was tested again a year later, I was stunned when it came back again as “high-risk”. But people who knew her would say things like, “Don’t worry, it’s not autism. She’s waay too social.” Did I look worried?

Prior to being enrolled in an ESE (Exceptional Student Education) program in the public school system, my daughter was assessed shortly after turning 3. In the evaluation, it was noted that she did not appear to have autism, so I went forward on the assumption that that was correct, and that I needed to focus only on her sensory issues. At the same time, her differences were becoming more apparent when among her peers.

After a few months of being enrolled in the program at the local public school, I received a call from the program coordinator who wanted to discuss a recent team meeting about my daughter. She wanted to let me know about the summer program and then we got on the subject of autism and seeking an official diagnosis. The coordinator, who has personal experience as well, suggested that I take her to a local children’s hospital if it was something I felt like I wanted to know. She explained that there were pros and cons to the official diagnosis. She was walking me through it before it even happened. None of this was really news, but it was news that someone other than me thought this and was now saying it out loud.

Two days before I received this phone call, I read an article that listed the symptoms for autism in girls. By the end of the list I realized I was holding my breath, because a large number of items on the list applied to my daughter. I read it over several times and finally did a tally: I could easily apply 38 of 55 symptoms listed on the described non-definitive list. Several days before that, I watched the ten minute introduction of Sesame Street’s new character with autism with my daughter and as I watched her get enraptured by Julia, I realized they had a lot in common. So, the realization that my daughter may have autism was fresh in my thoughts when I got the phone call from the school. It wasn’t news, but in some ways, it felt like it.

As my conversation with the coordinator continued I wasn’t able to keep it cool. She noticed my cracking voice as I stumbled to find the right words and she jumped in and said, “I know what you are feeling right now. You will go through a grieving process and that’s okay.” I was silent. I listened to her speak, as I struggled to find words. Would I grieve? What was I grieving? I have known for a long time now that my daughter is not like her peers. I knew she was different, she had sensory integration issues, language delays, developmental delays – things that she was overcoming in time. There was no loss here to grieve. Was there?

After the phone call, the concept of grief bounced around in my mind for close to a week when I realized that it was the permanence of autism that was clutching my breath. I had been holding on to the idea that one day – if I did everything I could for her – that things wouldn’t always be so hard for her, because society isn’t made for people who think or act differently. In fact laws have to be written just to enforce equality for those with disabilities, because it may not be considered otherwise.

But the truth of it is, autism is a part of what makes her who she is. And I love my daughter for who she is, with all of my heart. At the recommendation of the school’s program coordinator – the first person to say aloud what had been in the back of my mind – I called the autism specialty center and scheduled an appointment for my daughter to be evaluated in later this month.

 

The Village Voices

As parents, we always want to believe that the decisions we make throughout the day will provide the best possible outcomes for our children. So when someone comes along and tells us that we need to do things differently, it can feel like a huge blow our parenting ego and affect our decision-making moving forward.

My first meeting with my daughter’s former ABA therapist left me feeling incredulous and angry. I learned early on in our journey that therapists will tell you things you don’t want to hear about your parenting methods. “How dare this woman presume to know anything about me after one meeting,” I thought, “she doesn’t know my child like I do.”

Of course, the therapists do know my child – just in a different way. After that first meeting with the therapist, it took all I had to not call and cancel services. As time marched on, her advice and criticisms didn’t ease up, and I constantly fought the internal desire to fire her. But I didn’t, because the truth is, I had no clue how to handle certain situations, and I needed help. Did I follow everything she told me? No. Did I feel guilty for not doing everything she told me to do? No.

Every night, I go to bed asking myself if I have done enough for my daughter: am I giving her everything she needs to be successful? What have I done right? Wrong? I consider different therapies, research new programs, and question every decision I make. It’s exhausting. On top of all that, the advice and sometimes criticisms of her therapists play on repeat in my mind.

At one point, my daughter was receiving six hours of therapy a week from four different therapists, all of whom gave me instructions on how to do things – and how not to do things. I was constantly trying to compartmentalize all the information and make adjustments. The advice of therapists was a steady soundtrack in my mind: “She needs a sensory break”, “Don’t react”, “Stop anticipating her needs”, “Talk to her more often”, “Order the weighted blanket”. This advice dominated my thoughts, when all I wanted was to be her mom – not her therapist or case manager.

My daughter and I recently reconnected with her first speech therapist. We went for ice cream – she brought along her son and dog – and once we had our treats, we sat down outside to catch up. My daughter climbed all over the seats and onto the table before marching down the sidewalk and crawling into the shrubs. She hunted for sticks, she sang, and she approached strangers on nearby benches. It was impossible to have conversation when every other sentence out of my mouth was a plea for my daughter to come back or sit down or please listen.

Later, I heard from the speech therapist (of course), who said she needed to speak with me about “some things” and give me some advice. “Here we go again,” I thought. We have formed a friendship over the last few years and she has seen me through all the ups and downs of parenting and my personal life, so I knew that whatever she had to stay was coming from a place of good intentions, but I did have to steel myself for whatever advice was coming my way. She advised me that in certain situations I need to stop asking and start demanding my daughter do the things I need her to do. She explained that by asking her if she would do it, I was giving her a choice and some situations – like how to behave properly in a social situation – it isn’t a matter of “choice”.

No matter how often I hear it, and no matter who is saying it – it just doesn’t get easier to hear criticism. Their words always stay with me, long after they have been been spoken, their choir of voices echoing through my head as I try to sleep.

Whether or not I can “do this” is even a thought i’ve had on some of my worst nights – this whole parenting thing. It’s a ridiculous internal argument to have because of course I can and I am doing this parenting gig. I have supportive people cheering me on with their insight, tips, and suggestions.

And just like any successful athlete, actor, or business person, I need to stay receptive and open to the advice and wisdom of coaches and teachers along the way in order to be a successful parent. Does it mean I have to do everything they say? Of course not. But I will let go of my ego long enough to at least consider that there might be a better…or more effective way of doing things. It does take a village, after all.