A Second Boy!

Did you know that “parents who have a child with autism have about a 1 in 5 chance of having a second child with autism, a far greater risk than previously believed” (http://well.blogs.nytimes.com/2011/08/16/autism-risk-for-siblings-higher-than-expected/)?

“In general, the risk of having a child with autism spectrum disorder (ASD) is about 1 in 68, or 1.5%. But the risk goes up for families who already have a child with ASD. If a family has one child with ASD, the chance of the next child having ASD is about 20%. If the next child is a boy, the risk is 26%” (raisingchildren.net.au/articles/autism_spectrum_disorder_having_another_child.html).

We knew that we were having a boy. We didn’t even have a diagnosis for Liam until about a month before his brother was born. I like to think that we would not have done anything differently. We did adopt our third child though. I wonder how much the information above affected that decision. More likely, it was due to my having a “geriatric pregnancy” because I would turn 35 two weeks before our son, Kieran, was born.

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Kieran does not have autism. It was easy to tell that, especially since we had “things to look for.” However, we didn’t know that siblings of a child diagnosed with autism could have other issues, if they were the 4/5 who were not born with autism.

“43 percent of children in the high-risk group have at least one area of clinical concern, compared with 12 percent of siblings of typically developing children. Apart from autism, symptoms of ADHD are the most prevalent, occurring in 13 percent of the high-risk children” (https://spectrumnews.org/news/many-baby-sibs-without-autism-face-challenges-at-school-age/).

Kieran is a passionate, full-steam-ahead, do everything early, who-needs-sleep kind of kid. Kieran has ADHD and ODD, which we would find out when he was about 3 years old. “40 percent of children with ADHD also develop oppositional defiant disorder (ODD)” (http://www.additudemag.com/adhd-web/article/4646.html). I will write more about this later.

He potty trained way too early, because he saw Liam using the potty – he would not be stopped. We didn’t push or pressure him – in fact, we tried to calm him  down about it, not no avail. This led to his having accidents much later than I would have expected. Accidents happened also because he was way too busy with whatever he was doing to stop to use the bathroom. With Liam, once he was trained – he was good.

I have lots of “Kieran” stories to share. I will start tomorrow with how Liam and Kieran interacted. I truly believe Kieran was the best sibling Liam could have had – Kieran has pushed Liam (therapeutically) more than any of his teachers or peers. He had such early language skills, that Liam benefited greatly from his company. He is also extremely attuned to social situations. Too much so. Liam heard a lot about what others were thinking and feeling from Kieran. They are playmates. They are best friends. They are each other’s “button-pressers.”

Here’s a quick story to leave you with, from when Kieran was older, to show you a glimpse of the type of kid he is. He keeps us on our toes.

We were visiting my in-laws and Kieran asked to take a bath.

“No, buddy. We are going to have lunch soon. It’s not bath time. Maybe later.”

Stomping away, “I want a bath.”

“Not now, Kieran.”

Returning after about 15 later.

Smiling, “Mom, I just had an accident. Now you have to give me a bath.”

We were in trouble with our second child 🙂

New Pre-School

The new pre-school was working out well, minus the finances.

Liam’s teacher prided herself on being comfortable with teaching children with autism. She had taught one or two other children on the autism spectrum and was able to offer us a few ideas to try at home, that were working in school.

She really saw his “light.”

When we would come in to pick him up, she would make a comment about something that went well or that he had accomplished that day – to show growth. It was a very encouraging time for us.

Liam also had made a friend. She was a year younger than him and, it turns out, had an older brother on the autism spectrum too – also high functioning. She would do a lot of the talking and he would have someone by his side to play next to.

She was a great role model for Liam, for how to use language. I don’t believe they were assigned (aka forced) to play together. She just enjoyed his company and didn’t mind if he didn’t talk that much, or talked about letters or numbers. (Liam would go on to have many more girls who were his friends – who were inherently tolerant of his habits and were precocious in their own language skills. They didn’t need him to do too much of the talking for the relationship to go well)

I remember one day in specific. I came to pick Liam up and there he was, surrounded by all of the kids in the class, reading a book to them.

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They were listening to him read and he was doing a great job. Moreover, he looked happy. I asked what was going on. The teacher shared, “It’s story time – Liam is reading the story to the class.”

His teacher had found a way to take one of his strengths and highlight it with his classmates. This strategy has proven extremely effective throughout his schooling. While he struggles in many areas, he has been afforded distinct experiences that have allowed him to show what he can do well, and even model for others. He can give to, as well as receive from his peers. No longer was he the kid who needed everyone else’s help.

Testing

People from time to time will ask how we went about getting Liam an ASD (autism spectrum disorder) diagnosis. The process might be different for others, or in other states. This is what we experienced.

We worked through a developmental pediatrician to get his diagnosis. This opened up the opportunity to have early intervention services, and additional services such as an eating screening and a psycho-educational evaluation, when the time came. While school still did their own testing when he went to enroll in Kindergarten, having this diagnosis and all of this information beforehand was helpful in facilitating conversations between parties.

Liam had a friend early on who did not happen upon this route and everyone struggled to know how to service him, due to not having good information from before he entered school. ASD can look a little like ADHD, gifted, OCD, and many other things – it was a rough conversation and road for all. He wound up being home schooled because of the difficulty in figuring out the best path.

Many people had recommended we see a certain doctor when we got our appointment with the Children’s Hospital of Philadelphia’s (CHOP) Regional Autism Center. We didn’t get assigned that doctor, but absolutely loved and are very grateful for who we got: Dr. Kruger.

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The testing that she did was, as you can imagine, comprehensive. Dr. Kruger explained everything exceptionally well and gave me lots of resources and ideas to use/try out in the six months between our visits.

Basically, at that time, Liam was given the ADOS (The Autism Diagnostic Observation Schedule) (among other things), which came back as high functioning autism spectrum for receptive language (listening and reading), and autism for expressive language (speaking and writing). Dr. Kruger said she did not want to discuss Asperger Syndrome until he was older, because she wanted to give his language and brain more time to develop.

It was easy to see two things from our visits to CHOP: Liam played and spoke differently than other children. In that clinical setting, we noticed that he was “stiff” when he spoke to others. Often, he would be given a piece of paper and asked to draw. He would draw a few lines and then go off on a Mario and Luigi adventure, not to be interrupted by silly questions like, “How is school going?” or “How is your new baby brother?” We also realized here that we were VERY lucky to have Liam’s diagnosis for high-functioning. These visits provided us with perspective, which we needed as we continued to learn about how his brain worked.

The First Time I was “Tiger Mom”

When Liam was about three years old, I changed schools. It was for a lot less pay and during the interview, it was shared that as a courtesy, my kids could go to a day care owned and run by a board member. It was a huge blessing – the facility was on many acres, run by someone who was connected to education. We thought it would be wonderful.IM000247.JPG

And it was. Liam went into the three-year-old classroom and we actually saw improvements in many skills: social, movement, language, etc. He continued to receive early intervention there – it seemed perfect.

As Liam approached four, he was not fully potty trained. His peers started to be “promoted” to the four-year-old class. While Liam was older than some of them, he stayed in his current class. At first, I thought it was because of the potty training – fair enough- so we worked extra hard on it. After a month of success, Liam was still not promoted.

Meanwhile, new three-year-olds entered Liam’s class and we saw Liam revert in some of his behaviors – he was imitating these younger peers. His older peers had been effective role models for him, but now they were not in his class.

I called the director (the board member at my school), for a meeting.

At that meeting, it was shared with my husband and I that Liam would not be promoted until he had mastered all of the required skills needed in the four-year-old class. I shared with her how Liam was benefiting from the “mentor” behaviors and skills of his typically developing peers and that he was unlearning some skills due to being in class with younger children. She was adamant that he master those skills. I asked, “How is he going to learn them when no one is showing or teaching  them to him? She proudly shared how she had kept a five-year-old who had been diagnosed with Down Syndrome in the infant class years prior, and that child was so happy to be in that class.

I was shocked. As an educator, I didn’t think the decision was in the best interest of either child, mine or the one who had been left in the nursery. I couldn’t believe that she wasn’t seeing Liam’s strengths or how he had made such growth over the past year. She was only “seeing” the needs of the other kids and the teachers, not Liam. (Please know that others’ needs are very importation to us and you will see in future posts that I have worked in the past to ensure that they were being “seen”).

We ended the meeting. That night and the next day, I called around to other day cares to inquire about open spaces for four-year-olds. I could not let one person dictate what Liam needed or what was in his best interest. I called the director that weekend to inform her that we were pulling both kids (Kieran was in the infant room) from her programs.

The remained of that year, we struggled with finances, as my salary stayed the same, but now we had two tuitions to pay. I left that position at the end of that school year and moved to public school – which was also a blessing.

This was the first time that I needed to advocate for Liam over someone else’s opinion of him. It was the first time that it felt like someone was against us and really not seeing his “light,” as I would come to call it. Thankfully everything worked out, better than could have been expected, actually. I have all of his therapists and doctors to thank for “preparing” me (unbeknownst to all of us) to fight for what he needed and not succumb to what others didn’t understand about autism.

Early Intervention

I probably won’t say strongly enough my thoughts on the importance of early intervention for Liam. It was a game changer, literally. I have shared with teachers who feel frustrated about parents who don’t take their recommendation to get their child tested by early intervention, about the importance giving parents time to grieve the loss of a “typically” developing child – there is something (hopes, dreams, goals, etc.) you may have to “give up” when you say, my child won’t run as fast, read as well, process as easily, or make friends as well as others kids I know.

However, that call to early intervention is life-altering. The team comes out for free (at least in PA) to assess the child, and then the parent knows what they are dealing with, in terms of needs and a plan of action. Liam started to work with three specialists right away: teacher, speech, and OT. His daycare providers loved these individuals – they were helpful and informative and, especially in the birth-3 program, extremely nurturing and kind. I later met other parents who’s child had been serviced by the same OT and we spend 15 minutes raving about Mr. Ron! People still say that we were fortunate to get Liam services so early. I wish I had started them earlier – but there I go, second guessing myself again.

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At 2-1/2 years, I called the pediatrician again – “I’m still concerned.” I greatly appreciate that she said, “Ok, let’s figure this out.” She provided me with all of the information I needed to call the IU to get an early intervention team out to give Liam developmental testing.

The day the early intervention testing team came out,  I was 35 weeks pregnant. They were extremely efficient, patient with my questions, and friendly. They each took turns working with Liam. They gave him breaks and did fun things with him under the goal of obtaining information. This was not an intrusive or painful process.

One thing that was pointed out during the test was how Liam used language. He was asked to complete a puzzle and was having a little trouble finishing it. He asked for help, but the therapist showed me how he was asking. People use language to communicate thoughts, feelings, needs, or wants with others. Liam was communicating a need, but not to anyone. He kept his head down, but kept saying, “Help, help. Can’t do. Help.” She shared that he was talking and naming things out loud, but he didn’t seem to realize that he should direct that language to anyone in specific.

At the end of the evaluation, the team shared how long it would take before I would get the results. One of the clinicians pulled me aside and said, “Completely off the record, I think you are looking at Aspergers here. Call CHOP’s regional autism center. It will take you nine months to get in to see a developmental pediatrician. Our report will be done by that time. Get on the list for an appointment now.”

This was a huge blessing to us – to get on the list earlier than I might have. The wait was exactly nine months. The appointment and all the services that came with it would change even more things for Liam, for the better.

I am extremely grateful to this team, this softly spoken advice, and to his early interventionists. While this may not be how every feels, I was relieved to be able to put a name to something and begin to do my own learning. This was a huge day in our lives – a day that was very, very good.

Concerns

By age 2, I shared with two professionals my concerns about Liam. I was getting more and more out-of-sync information from school and even family, that we were growing concerned about.

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First, I spoke with a dear friend and former college roommate who is a speech therapist. I shared that Liam was still only speaking in one to two word phrases. We understood exactly what he wanted, but he really wasn’t “talking” – using his words to share thoughts and feeling. Also, he didn’t usually respond to what we said to him. It was as if we interrupted him – to make him listen – then he would go back to naming the world around him. So, he could say harpsichord, but couldn’t tell us what happened in school that day. He would recite the whole alphabet and count to 100, but didn’t say, good night, I love you. My friend shared that I should keep a close eye on him, but that it was hard to tell with boys – some don’t initially use language in the way that I was expecting. It was good that he was talking in two word phrases at his age, but to keep watch.

The other was Liam’s pediatrician. During his two year appointment, I shared some of the things he was not doing, that it seemed like he should be doing. When we would go to school to pick him up, we would always find him off by himself instead of interacting with the other kids. He didn’t play imaginatively at all. She asked if he sucked his thumb. Yes, he definitely did. He walked late (but he had a big head to balance). I shared about his lack of language use (I didn’t know about joint attention at this time). Similar to my friend, she said, watch for six more months, then call her if I was still concerned.

It’s harder with children who are high-functioning to tease out the precocious and eccentric from factors that need to have intervention. I didn’t feel completely at ease with waiting (I am type-A), but at least I had taken the step of sharing my worries with others who were more knowledgeable than me. I knew what to look for and had a time frame within which to act.

In the meantime, two wasn’t turning out so terrible due to our having a strict schedule that we followed to keep Liam at an even keel. This is not to say that he never got frustrated or anxious, or didn’t act two when he didn’t get his way – just that we had effective systems in place for dealing with his behaviors. He was our only child, still. This would change in a few months.

A Few of Our Favorite Things

In addition to boxes, letters, and numbers, there were a few other favorite things of Liam’s that I remember from that time of his life:

Music – Tame the savage beast? Not quite, but he really did enjoy all types of music. I even made up a song that he would ask for me to sing even when he was older.

Liam, Liam you are our precious boy,

Liam, Liam, you are our pride and joy.

It is time to wake up so we can have some fun,

It is time to wake up dear so we can get things done.

I created a variation for when he had to go to sleep, which we wound up using much more often.

It is time to go to sleep so that you can get your rest,

It is time to go to sleep so that you can be your best.

He was most attracted to toys that had music. I still have an earworm for the Mario Bros song. This clip from Big Bang Theory was hysterical and reminded me of this penchant of Liam’s – I may one day share with his future girlfriend.

Books – There were a few books that Liam absolutely adored. They became extremely special to us and were a way for him to understand, a bit, humor and affection. Any books probably would have worked, but these hold a special place in our heart.

Through them we learned how to talk with others kindly, how to count (didn’t need much practice there), how to predict, and when something was funny.

We actually used another book as well:
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This text gave us a way to talk about emotions – I highly recommend it. We would talk about how the food was feeling and why? It was very helpful as we started to realize that Liam had two moods: happy or sad, and nothing in between. This book helped us show him when and how to possibly add some emotions into his repertoire.

Reading also, of course, gave us a time to snuggle, laugh, and connect. To this day, he is an extremely affectionate boy. While that may have been the case anyway, I believe reading played a big role in fostering this trait. It’s why reading is and will always be one of our favorite things.