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.

Adjusting

Between ages 1 and 2, we were learning about and adjusting to Liam’s likes and dislikes – what would trigger a crisis and what would calm him.

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He definitely liked having a set schedule, one that allowed him to get a nap and eat precisely when he was hungry. (I will talk later about his sensitive system and low-blood sugar). We began to adhere to that schedule faithfully. It was quite a change from our pre-Liam days. We would find ourselves leaving family or friend events early, or arriving late, depending upon when Liam needed to eat or nap. As a family, this adjustment made us happy – or at least it kept things “even.” Less meltdowns and stressful times for Liam – happier, less stressed parents.

However, it definitely changed our “relationships” with others. My mom’s advice was that “the child should live with you, not you with the child.” Friends eventually stopped inviting us to parties, dinners, hang out, because we either declined one too many times (due to the time of the event, or possibly the amount of people who would be in attendance), or because of Liam became agitated if we stayed too long. We became a family who stayed in. We ordered in, instead of going out to eat, because that was a long amount of time to expect Liam to “sit still” or “keep quiet.” It’s much like our life is now – quiet and without too many events on nights and weekends. We do go out to eat, thanks to devices. Quite honestly, when he was older, the Nintendo DS was a huge blessing. (Yes, I have felt really guilty about how much time he has spend on devices, but we’ve tried meals and events the other way – not working!)

Additionally, we found out the toys that Liam liked (in addition to videos), and environments that would keep him content. In the picture above, you see a foam floor that Liam loved to play with – he was mesmerized by numbers and letters. He would play with them individually, like a little girl might play with dolls. (In fact, I think I’m the only parent on the planet who put the alphabet in “time out” because it wasn’t playing nicely with others).

This passion (preservation we would later learn it was named) shaped his literacy and numeracy skills: he was hyperlexic early on. We embraced his “talents” amidst the difficulties. We would have him count, a lot. We were impressed and rightly so. He is not a savant, but definitely excels in math and music. He could name a letter from us humming the song that was assigned to that letter on the alphabet ball. He has a great memory, but probably not an eidetic one. Once, when I accidentally called the image below a “piano,”

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Liam sighed, “No mom, harpsichord.”

He also liked confined spaces: hence, the huge box in the picture. Thankfully, we had to get new appliances during this time period. He would draw all over the inside and outside of the boxes (mostly with numbers and letters). Boxes were safe places he could play securely in. When he became stressed and didn’t have a box to which he could retreat, he would circle a playground, a living room/kitchen (if it was open enough to do so), a lobby, reciting the alphabet.

He was telling us in many ways what made him happy and what he did not like. Once we clued in to how he was communicating with us (having a regimented schedule helped us notice these things more clearly), we could anticipate and avoid his feeling distressed. So, while the world saw us jumping through hoops to make our kid happy, we saw it as creating a nurturing and peaceful environment from which we all benefitted greatly.

Day Care

When Liam started daycare, it was a great first placement – bright, clean facility with highly trained preschool teachers. There was a waiting list, so that seemed like a great sign. Here is a picture of his actual classroom when he started.

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While for many children, this room is vibrant and child-friendly, to Liam it was overstimulating, especially when you put nine other children into it.

The teacher didn’t share any concerns at first. But as Liam grew more mobile and the staff involved him in more activities, such as using play-doh, doing finger painting, and playing with the sand table, Liam’s became increasingly agitated and would have melt-downs with increasing frequency. These activities were ones that we wanted him to participate in. We didn’t realize he would feel differently.

Just before were were called in to “talk” about Liam’s adjustment to daycare, six months after he had started attending, the class had been working with shaving cream. They were just drawing pictures in it. There were photographs posted of all of the children having a grand time. Liam’s picture portrayed a child with a grimaced face, holding his hands (and body) as far away from the table as possible. He actually looked “in pain.”

We were very thankful, instead of on the defensive, to start the conversation about how Liam was feeling about such activities in his school setting. We would also talk about how he did not seem happy in general about going to school. We were very grateful for his teachers trying to figure things out, and then reaching out to talk with us about what was not working for him and them. They were not giving up on him, but knew that something was amiss.

It was the first of many conversations with teachers who were trying to do the right thing, but simply didn’t know about autism spectrum disorders, or how to ease Liam’s pain. At that time, we didn’t know what was going on either, but were glad that they had his best interest and happiness at heart.

Infancy

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You might ask, when did I first “know” about Liam. Well, I really didn’t know anything for quite a while. I was a new mom and, what did I really know?

Liam was an early riser and not huge on naps. He spit up quite a bit – to the extent that a cloth diaper became my wardrobe accessory for his first 10 months. He walked a little late, but otherwise got around well enough. He sucked his thumb, which can be an indicator, when taken with a ton of other factors. But I sucked my thumb until I was 10, so I thought it was just cutely genetic. He spoke single words early, especially for “a boy.”

Two things, retrospectively, were indicators, however, that I just didn’t know about. First, was his difficulty transitioning to the bottle when I needed to return to work. At the same time, I have heard about this with other infants. He was five months old and just would not take a bottle. We tried all of the standard tricks: someone else giving it to him, different nipples, etc. He was quite stubborn actually. Until I put him in front of a Baby Einstein video. Then, he would literally let me do anything to him. I’ve inserted one here in case you have not had the experience : https://www.youtube.com/watch?v=_HbEejSqE9Y

When we started therapies years later, I would find out that Liam strongly craves visual stimulation. It provides him comfort and “peace,” if you will. The music helped as well, but he loves visual. In fact, we had his hearing tested because, when placed in front of the television, he would act as if he could not hear us at all. A trick I later learned, instead of yelling, was to simply turn off the TV if I wanted him to listen. I still use this strategy today, actually! Craving certain stimuli might explain why many kids on the spectrum are so engaged with video game play. But not all children will prefer visual. Although “weaving” one’s fingers and rocking are also visual. Anyway, Liam took the bottle and I was a happy mom, able to go back to work – than you, Baby Einstein.

The other aspect that I missed was that Liam didn’t use gestures and had what’s called a lack of joint attention. I always share this with teachers with whom I am speaking. He does not use nonverbal language to communicate thoughts and did not point to things to drew our attention to anything – mom, come look at this – type of things. This is actually a big indicator. A colleague once, a psychologist, shared that he was testing two four-year-olds – both non-verbal. The one however had gestures and pointed in response to “show me the….” The other did not. The one without gestures and pointing was the one that the psychologist was more worried about.

At the time, I didn’t realize that Liam did not have gestures or did not point things out to us. He started to use single words early enough that we understood what he needed and wanted. In looking back, however – no gestures. Only a word or now, words.

We survived and learned to listen to him through this time, even if he might have gotten a bit too much screen time – something we negotiate on a daily basis to this day.

Thanks for reading!

 

Discoveries

Yesterday, I mentioned that I would share a bit more about the genetics behind Liam’s diagnosis.

We did not realize that my husband may have autistic characteristic until after our son was born. Prior to that, we just saw him as a quiet, hard working man. (We still see him that way, but now realize that he’s not shy, which many people labeled him). My husband became more “stressed” or “anxious” when our lives changed with the entry of a baby. Liam’s cry would unnerve my husband. The sound just cut right through him. When our second child arrive, the “chaos” that ensued would cause him to become visibly overwhelmed. Three kids… well, you get the picture. There’s also a dog now, by the way.

The characteristics were there from the start. However just like ADHD, back in the day, if kids were outside playing and schools were built upon purposeful play, there was not as much to notice. My husband has always been quiet. But growing up where his family was always outside, raising animals, and getting to work on his own, he thrives. It’s only when he’s forced into a “social” situation, such as school or our family, where he gets out of his comfort zone.

Communication: His Kindergarten teacher once shared that he hardly spoke in class, and only showed some “real” emotion that year on his birthday in early November, when his mom brought in cupcakes for the class. He’s always the kind to respond to my five questions in one text with “K.” He interacts really well with much younger or much older individuals. He volunteered in our daughter’s Kindergarten class and has been asked back twice when our daughter was older, to do crafts and numbers with the students. He was such a huge help when my Dad’s health was declining. Things that made me feel uncomfortable with my own father, he took in stride.

Attention to Detail: The word “artisan” is defined as: “a worker in a skilled trade, especially one that involves making things by hand.” This is my husband! One thing that can be a strong indicator of autism is weak central coherence – which is acute attention to details and seeing the trees for the forest, but not the gestalt or big picture of life. Uta Frith, a renowned autism researcher shared art work of individuals on the autism spectrum and it is truly astounding. Take for instance this map created by an 11-year-old who has an autism spectrum diagnosis:

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(http://50watts.com/Drawing-Autism).

My husband is gifted like this,  in trades such as woodworking, welding, kitchen and bath remodeling, electrical work, etc.:

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He is an artisan with a pristine attention to detail. He was also the vo-tech student who took Calculus.

Sensory: We don’t go to many places that are loud or contain large crowds. If we do, we usually are the first to leave. My husband hates the feel of popsicle sticks and won’t eat anything too mushy or slimy. (He at Chinese food first when he was 32 and met me – he will only do General Tso’s, but it’s Chinese!) When I talk loudly, he can sometimes think I am yelling at him.

Social Skills: My husband takes things literally. When I am sharing a problem, he can often feel that I’ve asked him to “solve it” instead of just listening to me. He doesn’t like to make eye contact – it feels uncomfortable to him. Talking on the phone, even to order a pizza, is something he avoids doing. He does not often smile, which has nothing to do with his mood.

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Individually, any of these characteristics would mean nothing. Together, they can paint a picture of what we have talked about and worked on with my son throughout early intervention and his school age social skills lessons.

When we started to learn about Liam, my husband had some “ah-ha’s.” Some of the strategies we have learned have helped; others don’t apply. My husband shared once that he finally understood himself a little better by being Liam’s Dad. For example, one of my husband’s middle school teachers called him “Howie.” At the time, my husband felt that he was being made fun of. I was actually called “Howie” by a senior I taught, with whom I had a great relationship. My husband has thought more on whether the name given by the teacher was actually “bullying” or something that was done as a way of “connecting” with him.

We have not sought a formal diagnosis for my husband because it’s not necessary (and also expensive). If I could go back and support him like we have Liam, in the past, when he was struggling to get through school, choose a career, and maintain friendships, I would love to – but even then, autism was not really “a thing.” He is a successful, beloved dad, who is not in need of a label to define him.

Yet, it has been helpful to know that his depressed feelings could be a part of ASD, and not something else. It has guided the way that I avoid bombarding him with too much information or try to “have the discussion” without giving him time to process. Most of all, it has helped him to “see” his son for his similar strengths, and to not be so worried about his less adept skills, such as saying goodnight or showing affection the way our other children do.