NOAH AOC

I know albinism is often confused with autism, but I am really beginning to fear that my 14mo old son Emerson (OCA1a) has some form of it. My main concerns are that he has no words at all yet, he does not seem interested in pretend play and he only rarely imitates us. I know a few parents on this board have expressed concerns with speech, but I'm wondering if others have or have had issues with the other two? Emerson will push all the proper buttons on his toys, for example, but he's more interested in chewing on his toy cars or spinning the wheels then he is in driving them around. If I hand him a brush and try to get him to pretend to brush his hair or my hair, he just laughs and chews on it. We spend a ton of time trying to get him to clap or wave, with very little success. I could go on, but I'll leave it at that.

I want to believe that this is somehow related to his vision, but I just don't see how. Any thoughts are greatly appreciated.

 

Cassandra 

Have you read any baby books? I have Your Baby's First Year Week by Week. They also make one for toddlers. It weekly talks about ways to encourage your baby in his development.

At this point, I wouldn't necessarily worry. Every baby is different. He's still sorta a baby, and could just be taking it slow. Yes, it could easily be related to his vision problems, but it also could just be that he's being cautious. My daughter did most of those things you describe right on or after schedule. Her vision problems are minimal. My son however, is just like yours in a way. He struggles with clapping. I grab his wrists and make him clap, and he likes it. Teacher does the same. But he has a really really hard time clapping. I think thats a visual delay. Andrew doesnt brush his hair either. That could jsut be lack of interest. And my 2 year old still likes to put things in her mouth. Andrews VI teacher says that mouthing things is just the way he sees things. Like a baby does, which neither one of our sons are out of the clear of baby stage yet. He tastes it as his way of associating himself with it. I can't get Andy to try to brush his hair either. He just puts it in his mouth or digs out the hair and puts that in his mouth. ew...i know.

I share you concerns on autism. Do some research. I read an article in Parents magazine about it. It says that most kids with it will develop fine until they turn two, then all of the sudden they're in their own strange world. The biggest thing they describe is not wanting to be held. Not wanting to be touched. And also not noticing other people. My Andy is very cuddly, so that is ebbing my fears. I do wonder about not noticing people. I don't know that he does sometimes. But I'm convicing myself that its becuase of his vision. He can't physically see the faces of the people towering over him, so he doesn't react. But other times he goes up to people, like he's trying to see who they are. And also, will go up to them wanting to be picked up.

Overall, I think alot of your fears could very easily be because he's just being cautious. He already has his vision problems to delay him. And because of his vision problems, he might well hesitate with everything else. It doesn't mean he's autistic. I have a 3 year old nephew who was way way behind on talking. I mean, he wouldnt say much either. I've read alot of your blog, and he'd probably be in the same boat as emerson. My nephew did eventually start talking more, but it wasn't until he was closer to three. The conclusion I've come to is that he was just being cautious. He didnt say a word until he could say it properly. He was unsure of himself. His little brother will say, ba for battery, and be for TV. But the older one wouldnt utter the words until he could say it properly. Even when he was getting into words, I'd ask him, can you say...this or that. He'd repeat some words, then he'd say, "yes" for other ones. And shake his head no for others. He was really delayed in his speech. But he's not in the least bit autistic, just cautious. I don't believe for one second that Emerson is anything more than just being cautious. With walking too...I've been thinking about this lately. Andrew's mommy said that his doctor said that he can see at a foot. So think about this. He's more than a foot tall. So maybe when he walks, he can't see the floor fully. So he's being cautious. Maybe I'm wrong in this frame of thinking. But if he can't see it well, maybe he is just being careful? Emerson might do the same, and my Andrew too.

Is he cuddly? Thats the first sign on Autism. Does he notice and react to other people? From what I've read on your blog, I'd say yes. So don't worry. It doesn't do you any good to worry about things that you have no control over. I will pray for you and your family.

 

I've had a death in the family this week, that's why I haven't replied to your email. I will soon. Hoping and praying things get a little easier. Above all, I feel that Emerson is just being cautious. And every baby is different in his development. Its not flat across the board. Don't worry. It will come in time.

My own impression as parent is that one should expect mimicry problems with low vision children - mimicry is primarily a visual activity, and why expect a brain with low visual input to develop those skills at a "normal" level?  Mimicry was definitely a delayed skill (and in some obvious ways, still is) with my 3 1/2 yr old Thor.   He mimics fine aurally, but for mechanical mimicry (hand/arm/body movements), it's still a significant issue.

Thank you so much for the fast reply - especially in the midst of your family issues. I'm so sorry about your loss and will send best thoughts your way too!

Your response made me feel so much better right away. I use the word "cautious" to describe Emerson all the time, but sometimse I just worry I'm missing something. It's hard to know how much his vision is affecting him and lately he's been doing so much better with his visual therapy that I think I've been overestimating what he should be able to do in other areas.

I didn't know that cuddling was considered such a major sign - he is definitely cuddly! He loves to hug and kiss us, kiss babies in books, and will even cuddle with people he barely knows if we hand him over. But he sounds a lot like your son when it comes to interacting with most people outside the family. He just sort of glares at people like he's studying them when they try to interact with him, and he doesn't gravitate toward other kids like other babies seem to. If they come over to him, he just study thems. Again, it's hard to know if he's just struggling to see them, but I'm glad to hear we're not completely alone on that.

 Don't worry about responding to my email until you have the time, but I'm glad we could connect. Thanks again!

Thanks you so much for the reassurance! Was Thor delayed at all in his speech the first year or so? I love the name by the way...

chartley:

Was Thor delayed at all in his speech the first year or so?

Yes, he was delayed prior to 20 months or so, technically.  But around 22-24 months, his verbiage exploded, a very steep curve, and he immediately jumped ahead of average for boys, and has stayed that way.  His conversation skills are delayed, but I regard that as consistent with his low vision, which I'm pretty sure has delayed his awareness of others as equivalent selves (though as recently as December he made big leaps in that area, for him).

I just reread your original post - 14 months... yes, I think that's too young to worry for real on those issues.  Although low vision can't necessarily be directly tied to various delays, I don't think it pays to underestimate the possible impacts it can have.  The brain naturally takes in about 80% of its information visually (so I've read) - I think it's naive to think that its development wouldn't be substantially affected in a number of ways (many unpredictable) when you reduce that input significantly. 

 We are dealing with this with our middle daughter. She will be 3 in May and since birth has been behind in almost every area. She was diagnosed with sensory  processing disorder and it now being tested for autism. If you are concerned talk to your therapists or go see a developmental pediatrician. If you are going through early childhood intervention then there should behavioral specialists on board that your coordinator can set up a meeting with. If you are conerned about it then it doesn't hurt to look into to it more. Our vision teacher told me when we started the autism testing that in her 20 years of working she has never once met a mother whose instincts were wrong when they felt there was something "off" about their child. Good luck to you.

 

Sorry I didn't read the other responses so please forgive me 

I guess I've never heard of albinism being confused with autism.

I think that concern is a good thing to an extent. We worry so much about our kids - I think moreso than the average parent. But I also think that we sometimes tend to tie too many things to vision. Not directed at you personally Cassandra AT ALL - just making a very general statement.

Maybe because my children weren't delayed that I am able to say that. I do remember asking though if there was anything I needed to watch for when they were little and was told no. I was told and remember to this day that our kids worlds are within a certain range of them. They will function within that world perfectly fine. (if there are no other issues). Brushing hair is a "close up" activity - if you were only doing that across the room, I would see how your son couldn't see that or mimic it. If clapping was across the room, the same thing applies.

The fact that your son laughs and chews on the brush is a good sign! He's being silly and prefers to have it in his mouth. I have an autistic nephew who I am very close to.. He wouldn't have laughed, believe me. He would sit under the ceiling fan for hours and hours just watching it go round and round. Autistic children do not "connect" the same way other children do. I should say they don't show their connection the same way. My nephew and I have a very strong connection that I am so proud of.

I know its hard not to worry, it sounds like it's just his little personality. Every child has a different timeline on when they do things these days. If you're truly worried, talk to your pediatrician.

Janice

I have never heard albinism being confused with autism either. I just know that kids with albinism can also have autism, which we believe my daughter is on the spectrum. We knew that her delays had nothing to do with her vision and were geniune concerns. 

 

Cassandra, if you are concerned then please look further into it. 

 Thank you so much for sharing your experience, that makes me feel a lot better!

When Emerson was a few months old and still not focusing on people's faces, we started researching it a little and found a few message boards with people talking about the similarities between albinism and autism, and we found a research paper on it. Unfortunately, we didn't save it and I can't seem to find either of them again.

Thank you so much for the advice and best of luck with your daughter! 

Cassandra (love your name too :)) 

 

 

Our daughter did not have any delays in this area.  She started with pretend play really early and still, at almost 6, LIVES for the world of pretend.  As for imitating us, it's hard to remember what that was like since it was so long ago but I do know that in terms of imitating gestures, I always made sure to be really close to her or exaggerate my expressions if it was something that I wanted her to imitate.  Even still, I always make sure that when she goes for any type of lessons (dance, swim, karate, etc.) that she is very close to the instructor so that she can imitate the motions properly.  Just this week, her kindergarten class put on a show and I noticed that since her teacher, who was directing the dances, was seated a little far from her, she'd glance at the kid right next to her every once in a while if she was unsure about what to do.

 

I agree with the previous posters that your son is very young to be overly concerned.  Most children by age 1 have a word or two in their vocabulary but a word doesn't necessarily mean the correct pronounciation of the word; it means consistently using the same sound for something.  For example, saying "ba ba" for bottle does qualify as a word if he always says "ba ba" when he wants his bottle.  Are there any sounds that he consistently uses to express himself?  Also, true pretend play (acting out a role, for example) is something that usually comes at a much later age so wanting to chew on his cars at 14 months instead of racing them doesn't seem to me to be too off base.  Kids that age generally explore the world by "mouthing" objects.  Maybe try to have him "pretend" or imitate things that he's very familiar with in his own daily life (pretending to "feed" you or favorite dolls, push a doll in a stroller, etc.) or work on the imitating with instruments like maracas or tambourines (you shake it and make the sound and then give it to him and see if he mimics) so that vision will not be the only thing that he'll need to rely on to imitate.  Try not to worry too much.  It is really early still and I'll bet that over the next few months, you'll start to see him imitating what you do.  And then you'll really have to watch out! :)

Hey Cassandra...

Our kids are only a few days apart. Andrew can only say mama, dada and baba. Every once in a while he will say a really good word, but not to say again, lol.. For example, he said "Maeve" a few weeks ago. I was on speaker  phone with my sister and she was trying to get her daughters attention, she kept saying her name. I guess andrew heard it and said it. Has not said it since, lol. Andrew does play with cars and plays with toys. It is weird, my daughter never played with toys until she was 2. She is fine. She is in time out a lot, lol. Horrible 3's!

I used to work with Autistic adults. I know the signs to look for. Usually, autism appears by age 2. The kids for the most part are talking and doing things ok. then it stops. Also, for the lower functioning kids, they usually do not like to be held, do not like loud noises, can not play with others, hand play or flapping their hands. Those kids one can usually tell before age 2. Go with your instincts as the other mommy said. I am not worried about Andy too much. He has 2 vision teachers. If they think he is behind, they will call in speech for him I am sure. Keep us updated with his words! Because they are the same age, I am curious if they will progress the same. I can not wait until we can all meet. We can not go to this Noah Con, but will go to the one after that!!!

For anyone out there with their kids in the Autism spectrum, please contact Eden Family of Services. They are wondeful. They travel all around the country. U can go to their website as well. They are located in Princeton, NJ. Eden has been around since the early 80's. They are the leading people to go to once one might have or have autism. They can give you tips how to deal with the child, IEP, work with the school etc.

Jill 

sorry I am just now responding to this thread.... I was unable to sign on until today. 

My son will be 2 in June and can only say dada... and he only say's it if we ask him to, of if I repeat it to him.   Sometimes he responds to people, sometimes he doesnt.  The other day, at my older son's T ball practice, another toddler approached Cash, and it was like Cash had no clue the child was standing there addressing him.   He could have cared less.  Then there are other times, he will come to you (from across the room) if you call him for us to pick him up.   He still isnt walking, but is crawling everywhere.  He only pulls up to his knee's, but if I place him against a coffee table, he WILL cruise around the table.   He STILL wont eat crunchy food, and will not feed himself (cookies, crackers etc) ... but has finally progressd to 'real' people food (as long as it is soft) and not just baby food. (loves mash potatoes, pudding, yogurt, smashed carrots..etc)    We have started the 'brushing' technique, and he laugh's when I brush him.   He is NOT fond of a toothbrush whatsoever.   Fabric's dont seem to bother him, but I notice he favor's shag rug's.   He is very cuddly, but I think that is his nature.  One thing I have noticed that may seem odd to someone else is, he loves to rock.  If you put him in his highchair, he immediately starts rocking back and forth, back and forth, making a 'aaah uhh, aaahh uhh,' sound.   I dont think that is a sign of anything being wrong, but it is something that he does often.    Sometimes I want to shout, "is there something ELSE going on here, that we are not aware of??!1" and sometimes I feel like he is fine, and doing things on his own term.  In my heart, I feel like he is fine, but sometimes I question it.

Cheryl,

The Rocking that Cash is doing fro right now is normal. It's just something he's  doing to smooth himself.  So, watch him because I've seen  totally bline kids do it. I had a blind friend who at the age of eighteen  was still doing it. It's hard to communicate with someone who does this action because for one thing if he continues doing it may make it hard for him to make friends and also I do believe that it affects the first impressions that he makes on people.