Intense Interests

Rachel Sonnier

Ok mommies,

I have another question for you. After 2 years DS has finally started to ease off of the fireman thing, and he went head first into Legos. It is Lego City, and the theme is rescue vehicles, but we are "easing." We really encouraged it for a while. We figured Legos would be great for fine motor, tactile play, joint stability and creativity. He really loved it and he was even branching out and attempting to build things that were well beyond his age and skill level, so we thought, GREAT!

And now he is obsessed with them. Like full on eats, sleeps and breathes Legos. He wakes up and goes straight for the box. He plays with them to the exclusion of other things that he used to enjoy. We are having to bribe him to go outside and ride bikes or play in his "fire station" (tree house), which are things he loves doing. He has a hard time separating himself from them, and sometimes just to get out of the door I will let him put some in a little bag to take along. 

There are many tears, frustrations and arguments surrounding the use of the Legos nowadays. He will not eat if the Legos are out in front of him and I am very certain if left up to his own devices he would play with the Legos all day. He talks about not wanting to go to school so that he can stay home with his legos, and worries that one of us might move or break them while he is gone. My instincts tell me to put a limit on Lego time, like other parents do with screen time, but I am not sure if this is the right thing to do. 

Here is my question: Should I discourage this type of obsessive play, or is this just typical for a 4.5 boy? My brother used to do this with buses, and then space, so I am familiar with what it can be like for kids who have a "thing." I feel like he probably falls somewhere on the spectrum, but his OT/SLP/Art Therapist keep saying they don't think he is, and its all SPD, or Apraxia, related. However, they admit that he does have problems socially and with play, and the SLP gave me a handout yesterday that says that they have been doing floor time with him in therapy. Do they generally do floor time with kids who are just SPD/Apraxic? I have no clue. 

We have an apt with a ped neuro in dec. I am just wondering if I should be worried about this, start setting up some boundaries with it, or just let him immerse himself in this Lego phase? 

Rachel Sonnier

Thanks Auntie! I figured you would know all about this. 

Yes, I realize that they are not qualified to make that call, which is why we are trying to see the neuro. His team is usually really good about saying "he needs X because we think Y may be an issue, go see a _____" so I tend to rely on their professional experience to a certain degree. But I understand that this isn't their area, so I we decided to see what the neuro thinks. 

I think we should see a dev ped too, but we are seeing the neuro because he does have some tone issues and problems with movement that are interfering with his development. He also has some pretty obvious face blindness, and the vision specialist and OT both said she would really like for us to see the neuro to make sure that nothing crazy is going on that is interfering with his ability to recognize people. 

What is ID? Intellectual Disability? If so, that isn't his issue. That is one area where he excels and he is actually very bright, despite all of these other issues. He has a hard time approaching kids who will not scaffold for him in regular play and he has a hard time even knowing who he is playing with, or reading their cues because of the face blindness and his other visual issues. *We think. It is so hard to see how it all fits together, but he does have problems with play skills and boundaries, and it is something that we are working on with floor time, apparently. 

Rachel Sonnier

I have been doing these play exercises with him that the SLP told me to work with him on, where we try to expand his play. Instead of letting him always lead, I say but I wanted to play this, or that instead. I try to lead him away from the fireman play and into novel play schemes. We work on him building his own novel play schemes. We do things where playfully I will ask, why should I do X, when he asks for it. We try to use play toys for other things besides their intended use. She has me trying to get him to use his words to initiate and engage in others in play, instead of scaffolding and filling in the gaps for him, like he wants us to do. That's what we are working on with him now. She never said how long to do it for, just that when we play together, this is what I should be doing with him. She said the more that we model for him how to initiate play with others, that he will learn the proper tactics to engage his peers, and get positive feed back from them. 

They don't call it homework, but the OT gave us a sensory diet, so we do the sensory diet. The SLP teaches me the PROMT cues and how to work with him at home with speech and play, so I just work with him on whatever they tell me to work on. 

Rachel Sonnier

So @Auntie, 

you do not think that the ped neuro is the dr we need to see regarding the face blindness? The vision specialist and OT both think the nuero is who we need to see. I think the OT is more concerned about the movement issues, and leg pains, but she is curious to see what is going on with the vision issues. 

You mentioned that a dev ped takes a more holistic approach, so could he help him with all of these issues, without worrying ourselves with seeing the neurologist at all? 

The neurologist is in another state, so it will be a big deal for us to schlep over there for this apt. They have a dev ped, that I think is about 2 hrs from us. The area we live in his very few ped specialists and we usually have to travel to see someone, so seeing the RIGHT someone is a big deal in our case. 

Rachel Sonnier

-auntie- said:

The other piece is that I don't see prosopagnosia as that "exotic" in the context of people with ASD. I know that in older people, it is sometimes the result of stroke. lesions or TBI, but I don't think this is a situation where he had the skill and lost it. It seems like this is more one of those "go with" processing quirks, like synesthesia, that are more common in people on spectrum or who are related/have traits. There is some emerging research that some people on spectrum use parts of their brains to process faces that NT people use to process things. Some folks have tried to create computer recognition software to teach this skill, others have relied on rote instruction of a rubric that can be used to identify different people.

My husband has it to a lesser degree. I think I was probably the first person to realize that he has a great deal of trouble recognizing people, but with DS it effects him much more. He has trouble recognizing family members in novel environments until he hears their voice. Daily he mistakes strangers for DH, my sister, his classmates, a teacher at his school, so I think his team, as well as myself is primarily concerned with the safety aspect of it. We have 3 people close to us with ASD dxs and none of them have this, so I didn't realize that it was an autism thing. I just thought that it was hereditary. 

Thank for the idea about the game. This is a great idea!

It's interesting that your OT is concerned about leg pain. That's sort of out of her wheelhouse. Typically, this would be something that would be noted by a PT. OT's manage fine motor- though they might gravitate to the core in hypotonia to support fine and graphomotor skills- and SPD. Has he been evaluated by a PT?

They do not currently have a PT on their team at the center where he receives therapy. But the leg pain effects his sleep and his ability to stay regulated. He tires easily and will get the leg pain, which is very sad to witness, and hinders their crashing and SI work sometimes, so I think his OT was just concerned about it overall as that he is so young to have chronic pain, and how it effects his daily life. 

Was the vision check done by a developmental ophthalmologist? Does he have other vision issues? Can he track? Does he have difficulty crossing the midline which can look like a vision issue?

We had him checked by both a ped ophthalmologist and a dev ophthalmologist that specializes in vision therapy. The reg OD screen came back clean, but the dev OD testing revealed convergence insufficiency, accommodative insufficiency, occulomotor dysfunction and visual processing disorder. She said that he has quite a bit of trouble bringing his eyes into focus and processing visual stimuli. She said that it may be related to the facial recognition issues, but that the other patients that she has had who had issues with facial recognition had either some kind of congenital brain abnormalities, or TBI. 

They tested him for tracking, which was poor, but she said at 4, she isn't concerned. She said if he is still tracking poorly at 7, then that is an issue. 

He does have trouble crossing the midline. He has no hand preference. He fatigues easily and switches hands often when using a writing utensil. He hasn't moved past the fisted grasp when holding a utensil (eating or writing). He has issues with balance, coordination, he has retained primitive movements, low tone, weakness in his hands, joint instability, motor planning issues, CAS and tends to stay in a retracted position at all times just to keep his mouth closed, he has the facial recognition issues, he has the chronic leg pain, SPD. 

Which sort of brings up another point. One of the greatest "risk factors" for an ASD dx is geographical proximity to another child with ASD. A big piece of this is not clusters but the fact that teachers, SLPs, pedis, OTs and the like are more likely to recognize milder presentations of ASD when they've actually serviced IEPs for such kids which leads to putting an evaluation team in place who can pick up subtle presentations and manage behavioral glitches more effectively. This was basically how we started the process for DS. His kindie teacher suspected ADHD and we agreed to have a MSW observe and do Conners Scales with him. She spent time with DS and was struck by his similarity to another student she had at a different school and turfed us to the local Asperger guru. This was back when Aspergers was thought to impact 1 in 1000, so it really wasn't on anyone's radar. When we had him evaluated by his dev pedi, the doc felt certain based on our intake paperwork that DS would get the Aspergers dx, so he called in a dozen pediatric residents in psychiatry, developmental and neurology to meet DS as he was thought to be a rare specimen. LOL, fast forward 12 years and his high school marching band had about 6 kids on spectrum at any given time.

Ok, so this is why I tend to trust their insistence that he is not ASD and that they are looking elsewhere for where the issues lie. They do work mostly with ASD kids from all points on the spectrum and DS's SLP is the one who actually organizes and runs the social learning groups for his therapy center. They all seem to think that the problem is not ASD, even though he has these intense interests and and issues with repetitive stereotyped play. He does have social issues with initiating play with others, ToM, higher order language, and approaching people appropriately, but he also has has good joint attention and seeks out others, even if he doesn't always engage them the right way. So I just don't know, and I think they probably don't really know either. 

From what I have gathered they think his main impediment in the social arena is the vision issues and his body awareness. 

For instance, the other day in the lobby, he yelled "That boy goes to my school. I played with him on the slide today." Then DS went over to hug the boy and interact with him as he would a friend, but the boy was a stranger. I knew it, because I just talked to the mom in the waiting room. DS didn't know it and he approached the boy inappropriately and the boy was very taken aback. These episodes are often. He yelled "DAD!!" and ran over to hug a man in the grocery store over the summer, which was extremely awkward and embarrassing for us all. During tball he consistently ran to this another kid's parents instead of us. 

It also makes me very concerned about safety, because I am 100% certain that he would follow or leave a store with a stranger he mistakenly thought was DH, or someone else that he knows, if I looked away for a second. Sometimes he doesn't believe me that the person is a stranger and not a relative and he will argue with me that the person is my sister, or my mother in law, etc. I know it probably doesn't seem like a novel situation, knowing what you know about ASD and propagnasia, but in every day situations it is really scary for us.