I was part of an on-line Due Date group with several dozen women who were all due in September 2012. We were together as a group pretty much since we found out we were pregnant. I was never as close to this group as I was to my May 2010 group (together 5 years now and still going strong, ladies!), but I made some good friends there and would chime in if I had a funny story to share or if I had a question that I hadn’t dealt with before.
Around the time all those babies were 10 and 11 months old, other moms started posting “she said her first word” and “here’s a video of him talking”. And there I was, looking at Simon, who wasn’t saying anything. He wasn’t even really babbling the way babies are supposed to do. It wasn’t just his lack of vocalization, either; he wasn’t waving or clapping. He used to give kisses, but now he stopped. There were times when it seemed like he couldn’t hear us. He was still happy and laughing and very, very active, but something just seemed…. off.
By 14 months, he still wasn’t talking. Wasn’t even close to it. He would make these noises, like ‘guh guh guh’, but he would do it without opening his mouth. You tried to do it, didn’t you? It’s hard, right? But that’s what he did. I remember getting really excited one evening shortly before Christmas when Simon looked out the window and saw Adam pulling into the drive from work. “Da!”, he shouted, and ran for the door. I nearly cried, thinking ‘Yay! He said his first word!’. He never said it again.
He started to exhibit other odd behaviors around this time. If he had a toy that made noise, he would hold it up to his right ear to listen. Additionally, he had been giving high-fives but now if you asked for a high-five and held out your hand, he would bump his forehead into your palm. He stopped giving kisses and instead would bump his forehead into your mouth.
So, I took him to the pediatrician. Remember, this is Kaiser we’re talking about. His doctor gave me the usual bullshit about how ‘boys talk later’ and ‘second children talk later’ and ‘his sister is so vocal he doesn’t need to talk’. (A note here about Eleanor. She was and still is very precocious and was talking in 2 and 3 word sentences by 13 or 14 months. I tried very hard not to compare their developments, but it’s hard not to when there’s such a large gap.) I wouldn’t accept what his pediatrician said and ended up scheduling another appointment with a different doctor at 15 months. I think it may have corresponded with him being ill, I’m not sure. Anyway, this doctor listened a little bit more. She still told me I was overreacting, but finally agreed to give us referrals for an audiology assessment and a speech assessment.
Now, while all this was going on, we were having a lot of other family changes. We had put our house up for sale at the beginning of December 2013 and had gotten numerous offers within the first few days, one of which we accepted. We were looking for a rental house to move into after the sale was completed. It was the holidays. And I was very, very pregnant, with my c-section scheduled for January 18th. After we got the referrals for audiology and speech, I scheduled those appointments for early January, hoping to have them done before the new baby arrived. To make matters even more fun, a few days after Christmas, Eleanor fell and lacerated her forehead open and ended up in the emergency room.
Early January was very chaotic. The buyers on our house flaked out the day they were supposed to sign the papers, and the resulting stress sent me into labor 11 days early. Our last baby, George, was born January 8, 2014, weighing a tiny (for me) 7 lb. 9.5 oz.
Simon was almost completely uninterested in his new baby brother, which was not unexpected. When he visited me in the hospital (damn, that was a horrific hospital stay), he spent most of his time trying to escape the room and run down the hallway.
We had to re-list our house and were lucky to get another offer almost immediately for even more money. And I had to reschedule Simon’s appointments.
Throughout all of this, I was posting on my Due Date group about my concerns and was hearing the same shite thrown back at me. “Boys talk later.” “He’s fine, he’ll talk when he’s ready” And so on. All while the other moms were bragging about their kids talking and counting and singing. I cried frequently. I didn’t begrudge them bragging about their kids, ’cause that’s what parents do, and I knew they weren’t doing it to be malicious, but it was hard to read nonetheless.
When George was a couple of weeks old, Simon had his audiology appointment. His hearing checked out fine. Then he had his first speech assessment on February 10.
We had to drive down to San Diego for the appointment as Kaiser did not have any speech pathologists in North County. She met with us for about 45 minutes or so and said that, yes, Simon did have a significant speech delay. At that appointment, he was 16 months old and his Receptive Language (his ability to process what he is being told, follow directions, etc) was at a 9-month level. His Expressive Language (his ability to outwardly communicate) was that of a 6-month-old!
Kaiser Permanente apparently will not cover speech therapy until a child is 24-months old, so the Speech Pathologist recommended an at-home program called ‘It Takes Two to Talk’ and told us to come back in a few months. She mentioned at the time that she thought Simon had ADHD, which we thought was ridiculous. We also opined that we didn’t think he was autistic and she gave us a funny look. I remember that clearly.
I dropped 50 bucks on the ‘It Takes Two to Talk’ program and it was worthless. It was all stuff we were already doing with him. Meh.
Towards the end of February, we moved into a rental house in preparation for us eventually moving to the Pacific NW. Adam was spending his evenings looking for a job in either Seattle or Portland. It was a much nicer house than where we had been and we all settled in well. Eleanor started preschool in March. George was doing all the newborn stuff. And I was worrying about Simon.
He started having meltdowns. Bad meltdowns. Half-hour long, 45 minutes. He had a picture book, My First Words, that had numbers 0-10 listed out and I found, purely by chance, that it would calm him down for me to count the numbers while pointing to them.
Zero…1…2…3…4…5…6…7…8…9…10…10…9…8…7…6…5…4…3…2…1…zero. Blast off! <poke his belly>
Repeat. Repeat. Repeat until calm.
We learned quickly to take that book with us everywhere. Everywhere.
He also started pushing his forehead on the floor. Remember how I said that he would bump his forehead into your hand for a high-five or bump his forehead into your mouth instead of kissing? Yeah, his forehead seemed to be a very important sensory spot for him. If you would ask him to love on his brother George, he would head-butt him. And, now, if he got particularly upset or anxious, he would push his forehead on the floor.
He also started hyper-focusing on items and activities. We introduced him to ‘Finding Nemo’ and for months, that was all he wanted to do. He would sit and look at his word book for hours. He became obsessed with pointing at pictures and having me name the object/letter/number for him. Over and over and over again. He began exhibiting what can best be described as OCD behavior. For example, before getting into his high chair to eat, he would have to run and slam his hands onto the door leading out to the garage. Every time. His cup always had to be on the same side of his high chair tray. He loved (and still does) watching the credits of movies. Even if he didn’t watch the movie, he would watch the credits. Even the news scroll at the bottom of the morning news was fascinating for him. Moving words or numbers = lots of fun for Simon.
At his 18-month Well Baby visit, I again stressed my concerns to his pediatrician, only to be told that Kaiser wouldn’t approve any developmental assessments until the age of 2, but not to worry, I was just overreacting, he was fine. Placation, placation, placation.
On May 2, Simon had his follow-up visit with the Speech Pathologist. She didn’t do another full assessment, so I don’t have scores available for that one. The records indicate that he was still significantly delayed, but speech therapy would not be approved until 24 months. She also mentioned that when he did get into speech therapy, it would be group therapy and not individual.
My response to that, and pardon my French, was “Fuck you very much.” My kid needed help, he needed it now, and damned if I was going to wait until September. I have friends all over the world with children that are dealing with cerebral palsy, autism, and sensory processing disorders, so I was familiar with the concept of Early Intervention Services typically offered through the county you live in. I started making phone calls and, finally, got him in for an assessment on June 9.
Zero…1…2…3…4…5…6…7…8…9…10…10…9…8…7…6…5…4…3…2…1…zero. Blast off!