DS got another diagnosis to add to the mix

[Gena]

DS had his twice a year visit to his Pediatric Ophthalmologist (PO) earlier this week. DS did a great job; it was the most cooperative he has been in the three years we've been going there. As a result he got the most thorough eye exam he has had yet (there were still a few tests he would not do). So after three years, the PO was finally able to see the back of DS's eyes well enough to confirm a diagnosis of Albinism. We are shocked. Even though we've known for years that this was on the list of possiblities, neither DH or I really believed that DS would end up with this diagnosis. Even though DS's coloring and light sensitivity made the diagnosis very plausible, we still did not think he really had it.

For those not familiar with Albinism (http://www.albinism.org/publications/what_is_albinism.html), it is an inherited condition that causes little or no pigment in a person's skin, hair, and eyes. As a result the person is very sensitive to sunlight and has a variety of vision problems. There is abnormal development of the retina and misrouting of the optic nerves. There are many different types of albinism, which can cause those affected to have varying degrees of pigment.

DS has some pigment in his hair, eyes, and skin, so he does not have the type that produces no pigment. But in order to find out exactly what type he has would require a bunch of expensive genetic tests that we cannot do at this time. But the PO assured us that right now it is not really necessary to know his exact type anyway.

This is the reason for DS's complex vision problems: extreme astigmatism, high hyperopia (far-sightedness), best corrected vision of 20/50 - 20/60 (with his glasses), extreme photosensitivity, strabismus (misalignment of the eyes), reduced depth perception, and foveal hypoplasia (lack of development in the retina).

My emotions are all over the place, even more so than when we got the autism diagnosis. On the one hand I feel silly for being upset. DS apparently has a mild form of the condition and there are so many kids who have diseases and disorders that are so much worse than this. On the other hand I think: how many more challenges is my little guy going to have to face? He already has diagnosis of Autism Spectrum Disorder (with all the language, social, and sensory issues that includes), Asthma, and Dyspraxia (motor planning disorder). And now this too? Any now we need to figureout how his vision problems interact with this other issues.

DH and I must have just a terrible mix of genes. Oh yeah - I'm feeling a lot of genetic guilt right now.

I dread having to tell family members about this. I had no hesitation telling them about DS's autism and how it explained his various behavior and language problems. I don't even know how to explain albinism to them. It seems like there is so much misinformation and myths about albinism out there in movies, books, TV, superstition, etc. Right now I just don't feel like I have the energy for the arguements and accusations that I know will come. Do I have to tell them?

This is long and rambling. So thanks for reading.

If anyone has any personal expereince with albinism, I would love to hear about it.

[ha98ed14]

:hug:, :hug: and more :hug:. No BTDT, but I do not think you have to tell anyone until you are good and ready, if ever. Really, it is not going to change how they feel or interact with DS. He is the same kiddo they knew before this visit to the eye doctor. Give yourself time to adjust to the news. I'm sending up some P&PTs for you and your boy.

[gatorsmom]

Do I have to tell them?



No. Really, why would you tell them? So that they are informed? What good would it do anyone? I'd keep it amongst yourselves.

I wanted to send you a bunch of virtual hugs because you are obviously on an emotional rollercoaster right now. Be reassured that the dust will settle, and you will see clearly again that your sweet son has been given a different set of tools to approach the world with. What an incredibly beautiful contribution he will make to the world. God knows what he is doing. :hug:

[mskitty]

Right now I just don't feel like I have the energy for the arguements and accusations that I know will come. Do I have to tell them?

This is long and rambling. So thanks for reading.

If anyone has any personal expereince with albinism, I would love to hear about it.

Allow yourself the time to process this new information. It's just a label. The information doesn't have to be broadcast. I've found the occasional "oh... did I forget to tell you that?" works wonders in certain situations.

My roommate in college is an albino. She does not let it affect her and finds ways to do everything everyone else does (except drive). She is a great person who just happens to look a bit different than the rest of us (white hair, pink eyes). The genetics are pretty random with her younger brothers: three have brown hair/eyes and one is albino as well.

Wishing you peace as you cope with the recent diagnosis,

mskitty

[MontrealMum]

Lots of (((hugs))). I don't have a whole lot of experience with that particular condition, although I do remember that there was a girl a few grades below me in h/s that had it. I am only aware of it because of her coloring, not because of particular behaviors or difficulties that she had - as in, I don't think she had too many problems specific to that. I don't know if that's a comfort or not - sorry!

You are a great mom, and are amazingly proactive for your DS. Do not beat yourself up about this!

Again, I don't know much about this condition, but I don't see why you should have to tell people about it. I don't see any particular reason why you should have to tell people in this case. Deal with it on your own, gather information, get your DS whatever help he needs specific to this diagnosis, if any, and decide to tell people, or not, in your own time. :hug:

[Kitten007]

God gives us blessings and he knew you could handle anything and everything and that you had the BIGGEST :heartbeat: and knew this special little angel was meant for you. Who knows? Maybe he will cure cancer. Or be the next Bill Gates or Donald Trump (hopefully no comb-over).

Many :hug:!!!

[o_mom]

No. Really, why would you tell them? So that they are informed? What good would it do anyone? I'd keep it amongst yourselves.

I wanted to send you a bunch of virtual hugs because you are obviously on an emotional rollercoaster right now. Be reassured that the dust will settle, and you will see clearly again that your sweet son has been given a different set of tools to approach the world with. What an incredibly beautiful contribution he will make to the world. God knows what he is doing. :hug:


This, exactly. Lisa said it so much better than I could ever. :hug:

[egoldber]

:hug:

The only concern I would have about not sharing is that it may make it seem to your son that you are ashamed of his condition. Also, if there is a genetic component, it seems like you would want to share that with others in the family so they could be on the alert for issues in their own children.

But there is nothing that says this needs to be shared right away. I would give yourselves time to process the information and come to terms with it in your own way.

[JTsMom]

I'm so sorry Gena. :hug: FWIW, I think you did a superb job explaining it to us. I know it's a totally different dynamic with family, but I just wanted to say when you've explained other special needs things to me in the past when I've had questions about some of DS's challenges, I've always thought you have an amazing gift for explaining stuff.

I totally hear you on the genetic guilt. One time, another heart mom friend of mine and I swapped all of our deepest, darkest "It's all my fault" worries. Even the totally ridiculous ones that we logically know couldn't have anything to do with it. It really helped to say it all to someone who got it. If you have anyone like that, don't forget to lean on them when you need to, and if you don't, I'm always here to listen if you want to talk.

[elliput]

:hug::hug::hug: Take it easy on yourself, Gena. The right time will present itself to discuss your DS's new diagnosis with relatives- just wait for that time.

[icunurse]

I knew girl with albinism in college.....white hair, red eyes, bad vision. She was a real sweetheart, did tons of volunteering, smart, outgoing. As far as I know, no one in the group we belonged to ever made any comments about it, at least I never heard anything. She's married now with a couple of kids.

I personally don't see the big deal it, but every person/family is different and I know how that goes :) Take the time to adsorb it yourself and then decide what to do.

[ha98ed14]

FWIW, I think you did a superb job explaining it to us. I know it's a totally different dynamic with family, but I just wanted to say when you've explained other special needs things to me in the past when I've had questions about some of DS's challenges, I've always thought you have an amazing gift for explaining stuff.


ITA! You were such a help to me when I was dealing with all of DD's challenges! Not that you have to use the gift to tell anyone. But you are a smart woman and DS is so fortunate to have you to advocate for him.

Something I should add, DH actually did have a student who had albinism. The family had two other children without the condition. The student got wonderful resources to help her cope in the classroom and she did really well! She was one of DH's favorites! When the time comes, check with your school district because they have support services for visually impaired students.

[Globetrotter]

:hug:

Your son is lucky to have you for his mom. As for telling others, do it as you feel comfortable but I don't think you are obliged to tell anyone, unless it's a relative who may be affected. I wouldn't totally hide it, either, because you don't want him to think it's something to be ashamed of.

We've gone through this (not albinism, but another condition) with dd, and I decided only to tell the people who will be supportive towards me (which, sadly, doesn't include my family).

[Gena]

Thank you everyone for your kind words and encouragement. They mean more to me than I can say.


No. Really, why would you tell them? So that they are informed? What good would it do anyone? I'd keep it amongst yourselves.

I wanted to send you a bunch of virtual hugs because you are obviously on an emotional rollercoaster right now. Be reassured that the dust will settle, and you will see clearly again that your sweet son has been given a different set of tools to approach the world with. What an incredibly beautiful contribution he will make to the world. God knows what he is doing. :hug:

Emotional rollercoaster is right. Aside from this, I'm starting a new job on Monday after being a SAHM for 4 years. (DH was laid off early this summer and we have both been looking for work since.) Additionally my Dad is in the hosptial again. So I've been feeling emotionally exhausted these past couple of days.

As for why I want to tell family members, that's a really good question. I guess I just want them to understand DS. Especially my in-laws, who have given me a lot of flak over the years. DH and his family all have beautiful olive-toned skin and tan wonderfully. I doubt that any of them have ever had a painful sunburn despite the fact that they rarely use sunscreen. (DH does use a low SPF sunscreen, but only because I nag him about it.) In contract, I have a very fair complexion and had many bad sunburns as a kid, so I always use sunscreen. DS's skin is much fairer than mine and I am diligent about protecting his skin. I use sunscreen on him and I try to avoid having him outside for long during the middle of the day, although we do play outside a lot in the late afternoon and evenings. My in-laws seem to have a hard time understanding the fact that DS simply does not tan. They look at his skin and make comments about how he is as white as a sheet or "so white he must glow in the dark." They say that I must lock him up inside all the time and tell me that I need to have him outside more often. They give me a hard time about slathering on the sunscreen and tell me that I should "skip it and just let him tan". They don't get it that he doesn't tan. They think it's ridiculous that we spend the money to get him transition lenses for his glasses and that we let him wear his ballcap everywhere. They think he just needs to learn to get used to the sunlight. And I'm so tired of hearing all of it.

Until we got the autism diagnosis, my in-laws blamed DS's developmental, social, and language issues on my "bad parenting choices". Once they understood his disorder, things got better in that regard. So I'm hoping that maybe if they can understand that he has albinism they will stop making the rude comments. I don't know - maybe that's too much to hope for.



I totally hear you on the genetic guilt. One time, another heart mom friend of mine and I swapped all of our deepest, darkest "It's all my fault" worries. Even the totally ridiculous ones that we logically know couldn't have anything to do with it. It really helped to say it all to someone who got it. If you have anyone like that, don't forget to lean on them when you need to, and if you don't, I'm always here to listen if you want to talk.

The genetic guilt is rough. And intellectually I know that it's silly and totally not my fault, but emotionally...it's just hard. I am adopted and grew up not nowing any of my genetic medical information. For years I was terrified of the idea that I would pass something terrible onto my kids. This is one of the reasons I searched for my birthparents in my early 20's, so I would have some information before I got married and had a child. I found and met my birthmother, and the worst medical things in her family was sinus problems. My birthfather died before I even knew his name, but I learned that heart disease runs in his family. I felt that these were common, managable conditions and I stopped worrying about genetic problems. But I passed this genetic disorder onto my son anyways, so in a way I feel like all the time, effort, and money I spent searching for answers didn't make a difference at all. I know that logically this doesn't make sense, but that doesn't stop me from feeling this way. It's really hard to explain.

Thanks again to everyone who responded. I really do appreciate your comments. Hubby is still in shock and denial and doesn't want to talk about it yet.

[Naranjadia]

Gena -

I just wanted to share on the matter of genetic guilt. I was born with a crazy cocktail of congenital diseases. Two were extremely rare and not shared by anyone in my family. One wasn't diagnosed until I was 32, but nevertheless affected my entire life. I know that my mother must have felt a great deal of guilt, especially when I was younger and didn't have as good a handle on being a "freak."

When it came to having my children, I chose to go with an egg donor, but it wasn't because I didn't want my children to have the kind of life I have had - it was mainly because some of my conditions could express themselves in a much more severe form. Even then, I really pondered that, because it's just impossible to predict the effect limitations will have.

I'm trying to figure out what I am saying here - I guess it's that guilt now is kind of a premature mourning - in the sense that you don't know yet how your DS will adapt, what joys he will find. Not to diminish the challenges, both for you and for him. I guess just hate the thought of you feeling guilt as much as I hate the thought of my mother feeling it. (eta - okay, maybe not as much, since she is my mom :) )

[citymama]

Gena - I just wanted to send you hugs and best wishes. I agree with the others - take your time to process the info; wait until you are good and ready. There is no need to be ashamed or embarrassed - you have received a diagnosis, sure, but nothing has changed in terms of who your son is, and how loved he is. Being told he has a form of albinism doesn't change anything. It's hard to say "don't feel guilty" but really, how does it help? Try and be gentle on yourself - we're all sending heaps of kindness and affection your way. :hug:

[MamaMolly]

ITA with the others, you explained it beautifully. And I'm so, so sorry about the hurtful comments from your inlaws. They should be ashamed of themselves.

DS is lucky to have you as a mom. :kisscheek:

[sidmand]

:hug:

I'm sorry you're going through this. Your son is lucky to have you.

Ultimately, like you said, this explains many of his vision problems and some of his sensitivities and it may help to understand the physical cause.

If you think it would help them understand and be more accepting, by all means share the information--once you've processed it. But if you don't think it'll make any difference to people (esp. your inlaws) then it's no one's business but your own. But if your inlaws did understand the autism diagnosis and things changed, perhaps they will understand this? Although some of the comments they have made don't sound like that would be likely.

It depends what helps you process things and what is most helpful to your family. For me it made it easier to tell people about DS and his diagnosis. But I have friends who haven't told even their families because of various reasons.

[WatchingThemGrow]

ITA with the PP that you explain things well. My guess it that after you and DH have time to process it, that talking with the ILs about their comments about their grandchild would ease your mind. If they were able to understand autism, I'm guessing they would understand albinism as well and love him all the more. (And feel bad about the comments they've made)

[Globetrotter]

After reading your update, I do agree it's best to tell the IL's so they take the sun protection seriously. It's a shame that you have to justify it, but whatever it takes!

[mommy111]

No. Really, why would you tell them? So that they are informed? What good would it do anyone? I'd keep it amongst yourselves.

I wanted to send you a bunch of virtual hugs because you are obviously on an emotional rollercoaster right now. Be reassured that the dust will settle, and you will see clearly again that your sweet son has been given a different set of tools to approach the world with. What an incredibly beautiful contribution he will make to the world. God knows what he is doing. :hug:
:yeahthat:
Sending you hugs and positive thoughts. Its just a name given to what your little guy has. It doesn't change him....or anything, really!