Splash pad

Splash pad

It’s hot in Texas, ridiculously hot. Sometimes the only relief I can offer my kids from the boredom of staying indoors is a trip to a park with a splash pad. It distracts them for a while and D has an especially good time being the water bug he is. That doesn’t mean I can let my guard down though.

On our last visit a little boy about five years old approached D. He wanted the toy my son had in his hand. D didn’t really have an interest in playing or sharing so he guarded his toy and kept running away from the boy. Frustrated, the boy told his mother that D had his toy. My anxiety went through the roof. How do I diffuse this situation and tell this boy’s mother he’s lying? Before I was able to stand up another mom spoke out and said, “No, that’s his toy. He’s been playing with it this whole time.”

Crisis averted. The mom that spoke up was cool, calm and collected. She had been watching also. Why had I not been able to muster up the same confidence as quickly as she did?

The kids continued to play and finally the little boy asked my son what his name was. D didn’t make eye contact and kept playing by himself, from the outside it looked like my son did not hear him but I knew he did. Again the boy approached, asked and did not get a response. After the fourth time he went and got his mother. If you have read my post When Other Moms Are Rude you’ll understand why I gave them their space. (Long story short: D and I were callously rejected at a park when I tried to explain he had autism and could not speak.)

She got down to her son’s eye level and told him to ask again nicely. At this point I got up and walked toward them. I told them his name and explained that he could not yet respond because he has autism. I wasn’t ready for the response I got though. Her jaw dropped and she said, “Oh! I’m so sorry! I had no idea!” I just said, “it’s ok” and walked back to my seat in the shade. Her response felt a bit much, at the most I expected an acknowledgment like “oh ok”. Instead I felt awkward because in her mind autism warranted over-sympathy. I really wanted to tell her that it’s just a word that means he learns differently than other children, but I didn’t.

Did I really have to?

When I see or meet other families with children on the spectrum I acknowledge them first with an understanding smile. It’s a silent camaraderie. If we happen to strike up a conversation – great! If not, it’s perfectly fine. We have our hands full as it is, worrying about having a coherent exchange is at the bottom of our list of priorities. We know our struggles are different but at the root of it all are our children, bound by the same diagnosis.

Aisle 12

Aisle 12

I went grocery shopping by myself this weekend, I usually have D or Baby A with me but this time I was alone.  It wasn’t the first time I had this opportunity but I always feel like I’m missing something when I don’t have them with me.  The upside:  I was able to focus more on what I actually needed to get instead of herding kittens.

I’m past being embarrassed by, “Sto-” “C’mere” “No” “Wai-” “Get dow-” “What are y-” “Don’t”, etc.  It felt strange to think in full sentences.

I pushed my cart to a checkout lane, acknowledged the cashier and bagger when they greeted me and typed in my reward card information.  I noticed the young man waiting to bag my groceries was not picking up the items as they came down the belt to him.  He finally leaned over the pile, almost parallel to the floor, and began stimming.  It was a sort of rapid wrist twist that caused his fingers to make a popping sound.  It lasted about 20 seconds and afterward he stood up and seemed fine.

He looked into the distance and was not putting the groceries in bags and I made it a point to wait until he started to ask if I could assist him.  He never made eye contact and simply replied, “Sure.”  I began bagging my items alongside him and remember thinking that I was so proud of him.  This is someone I’ve never met before and yet I feel like I know a tiny bit of his struggle.  As if this somehow connected us on a non-existent level.

When I finished loading my truck I sat and thought about him.  I hoped he was being respected by all the customers he came across.  That they be understanding, kind and without judgment toward this young man who was working harder than they could know.

It gave me hope for my son also.  A reassurance that he will exceed all expectations.

ARD Meeting

ARD Meeting

Last Monday was rough. I had D’s ARD meeting, if I remember correctly it stands for Annual Review/Dismissal. There is something about these meetings that raises my anxiety but I haven’t quite figured out what that is yet. I still have mixed emotions about how it went.

It started out by highlighting his goals and accomplishments for the past school year. The speech pathologist went over how much progress he’s made and what his areas of improvement are. His compliance needs work, that’s not to say he doesn’t work hard but he only works when he wants to. It doesn’t happen often, but it does happen.

The occupational therapist went over how he is mastering vertical and horizontal lines and that he likes taking turns with her. Currently, he is working on drawing a circle. Same comments about compliance as the speech pathologist.

His teacher had nothing but praises and again brought up compliance. She also brought up an assessment, one of a million that I can’t remember the acronym for, and stated that his communication is equivalent to 0-18 months still. I couldn’t hear anything she said after that for ten seconds. Her lips kept moving but nothing comprehensible made it to my brain. If I’m being honest, that’s not what I wanted to hear.

When I was able to focus again, she was saying that D needed to be in a PPCD 2 classroom next year. Another ton of bricks. He would benefit greatly in a classroom with peers that were on the high-functioning end of the spectrum, this was her reasoning. When I caught my breath, she said, “it’s a good thing.”

In all reality, it probably is. I just need to learn how to reign in my anxiety as an autism parent and learn to trust professional opinions.

When Other Moms Are Rude

When Other Moms Are Rude

About a year ago I was at the park with D.  Summer in Texas can be brutal so we like to play as early in the day as we can or early evenings.  I remember it was a Sunday morning because it was our best chance at having the park to ourselves.

There was another mom there with her son who looked to be around the same age as D.  At this point, my son was still very non-verbal.  He could not independently say hello or goodbye.  Eventually, our two kids met and her son addressed mine and asked his name.

After the third time he asked I knelt down to his level and gently explained to the little boy that my son could not speak.  I looked up at his mother and she didn’t have an expression on her face.  I know parents are uncomfortable with strangers speaking to their children so I said to her, “he is non-verbal and has autism so we are still practicing with hellos.”

She yanked her son by the arm and left without ever acknowledging our presence.  I will never know what went on in her head, and quite frankly, I don’t care.  What an incredibly rude thing to do.

I was hurt of course.  I am no stranger to rejection but this was different.  This was another parent openly displaying their disgust for my child.  How could she see my son as an affront?

She was dressed in black leggings, a peach racerback shirt, a blue drawstring sack, aviator shades, her hair was tied back and she was wearing a headband.  Regular suburban mom, right?  I feel like this was the parent version of Mean Girls.

Autism awareness is important and so is acceptance.  Yes, we have come very far in a decade but there is still work that needs to be done so our kids have a fair shot in this world.  After all, our children will inherit the Earth.

Stay positive and spread joy.

Worst Early Childhood Services Provider

Worst Early Childhood Services Provider

D is only three and we have already gone through our fair share of providers.

We were steered toward an Early Childhood Intervention (ECI) evaluation after our insurance decided they would not cover D’s speech or ABA therapy.  At his initial evaluation, the providers determined that D qualified for services.  D was assigned a provider and we were happy that he was getting the help he needed.

At first, the provider would strictly come to our home and demonstrate therapy techniques for us to practice.  She would come by once a week and we were seeing progress on D’s end.  Finally, she suggested that she visit the daycare so she could coach his teachers there.  After coming to our home for 2 months we felt comfortable she would provide services at his daycare.

About three months later we began to see some regression in D.  This is not uncommon in children with ASD so we convinced ourselves this was a normal part of the process.  I emailed her to ask about his progress and she sent me a “progress note” of her latest visit.  It looked like everything was running smoothly.

Until his daycare teacher asked me if he was still getting services.  I was slack-jawed.  I spoke to his teacher and the director of the daycare and they both said they had not seen D’s provider for a while.  We asked to see the sign in log for visitors and saw that the last time she signed in was the first week of April.  It was July.

One of the things I like the most about that daycare is that they take meticulous notes on who stops by.  Parents have an individual code they have to enter on a keypad and everyone else has to be buzzed in.  They also have security cameras installed in every room.  There was no way she could slip in unnoticed, sit down with my son for an hour and no one see a thing.  I was devastated.

My son had not received services for over three months.  My husband was livid and called her supervisor.  She eventually admitted to not going to see my son because she was overwhelmed and figured he would be the least impacted.  What in the actual *expletive*!

I can’t say it was all for naught though.  That was a harsh lesson in ECS providers.  This person took advantage of the fact that my son could not speak and our inexperience when their career is centered on helping children in need and their families.  I admit I have a hard time trusting that D’s providers have his best interest in mind now.

It’s sad that one person, the very first person we were exposed to, ruined our trust in people who are supposed to help our son.  We have had better luck since then, but that initial burn will stay with us.

If you are an ASD parent or family and you suspect something is not right with the services your child is receiving, please trust your gut and take action.  I should have investigated further when I saw D’s regression but a part of me did not want to believe that an adult who was supposed to be helping him was actually neglecting him.

Raising Our Biracial Kids in Suburbia

Raising Our Biracial Kids in Suburbia

I grew up in a relatively rough neighborhood.  I realized quickly that I didn’t want to raise a family in that same environment.

After six years in the Air Force I decided I would move to Texas to finish college.  Eventually, I got a job where I met my husband.  We lived in an apartment community in a good area in town.  When we got pregnant we both decided to purchase a single family home further into the suburbs.  We wanted our child(ren) to have a big backyard and the freedom to run around at all times of the day.  I was 38 weeks pregnant when we closed on our house.

When the time came for me to go back to work we started scouting daycares.  We realized we did not live in a diverse area.  I am first generation American, my parents were Peruvian immigrants, and my husband is black.  Our kids don’t quite look like anyone else here – they have an olive tone and very thick, curly hair.

My hope for my children is that they are able to grow up without feeling like anomalies.

Though my early childhood was spent in a bad neighborhood we ended up moving to a better area when I was seven.  My parents were thrilled but I was in hell.  I was tirelessly teased by most of the kids at my school.  Almost all of it stemmed from the fact that I physically looked differently than they did.

I have been so traumatized that I am seriously considering homeschooling my kids in a couple of years.  I would have to quit my full-time job and we would probably have to move into a smaller home but I am willing to do all of this just so my kids don’t go through what I went through.  The current social climate is exacerbating my anxiety.

We have a couple of years until we have to make a firm decision but I think I already have my mind made up.

As a parent, we try our best to give our children the most opportunities to succeed.  I may just be projecting my struggles onto them which I also want to avoid.  They have so much potential and I want to instill in them that they can do anything.  I don’t really worry about Baby A because she is as headstrong a little girl as I have ever met.  It’s D who I don’t want to fail.  He is already considered different by the very nature of his diagnosis and I want to help him open as many doors as possible.

Maybe I just need to relax.

I might just be an elephant parent.