Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Wow, I am impressed! No seizures. I guess I am worried she will Google SWS and see the brain involvement cases and wonder about my dd. You have to admit, when you Google, you see the worst/scariest cases. My dd has been super fortunate.

I sent the teacher an email about her port-wine stain to make it clear we are comfortable/want it to be something that is normalized. She was like--Loh, not worried about that.". Hence my confusion and worry.

Don't be impressed I have SWS. If it were my DD, I would mention the symptoms and not give the teacher anything to google. Most people never heard of SWS... and symptoms can vary widely.

I never had seizures and attended elite private schools so people don't think I have cognitive issues unless they think all lawyers do

My birthmark was lasered off years ago and my glaucoma is under control: I have 20/20 vision with contacts.

FYI, I never considered having SWS as having special needs at least for me.

If you have considered getting the port wine stain treated, I would do it sooner than later.

Best wishes to the little one!

I would totally give you a hug if I could PP! My husband and I are geeky PhDs and we love her pws actually and she is having laser treatments (it is much lighter now), but we want her to have a rich intellectual life and would be proud even if she were a lawyer. Seriously, thank you! SWS is so rare and I get excited to know of a person with SWS who says something like "I never considered having SWS as having special needs at least for me." I hope my dd grows up with the same attitude!

You are welcome! My SWS was always a bigger deal for my parents than me. Like many parents they wanted to know "why their child" and how they can make everything better for me. They were always over protective which is understandable but exasperating for me nevertheless.

I did have many laser treatments and many eye surgeries including a shunt implanted into one of my eyes to control the glaucoma but the SWS did not affect me at school. More importantly socially, I look normal once the birthmark was treated. No one can tell I "have" anything. I am married to another Ivy educated lawyer and have a kid. So I wouldn't let the stories on the internet about SWS scare you. Your DD can have a perfectly normal life.

This is vomitous.

Anonymous wrote:OP, just be very clear with the teacher and spell out her exact symptoms. I'd even say something like, "While some kids with this syndrome have cognitive delays, my daughter doesn't."

What a weird thing this would be to say. I just can't fathom saying this to a teacher. I can't fathom a scenario in which a teacher would assume your child had cognitive delays based on a website.

I have to agree with the PP; it sounds like you are ultra concerned that your child is going to be judged as intellectually disabled because, you know, God Forbid.

Should I go around offering up that my daughter, who has cerebral palsy, is not one of those cerebral palsy kids with those icky seizures you hear about to everyone she comes into contact with?

Special needs mom.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Wow, I am impressed! No seizures. I guess I am worried she will Google SWS and see the brain involvement cases and wonder about my dd. You have to admit, when you Google, you see the worst/scariest cases. My dd has been super fortunate.

I sent the teacher an email about her port-wine stain to make it clear we are comfortable/want it to be something that is normalized. She was like--Loh, not worried about that.". Hence my confusion and worry.

Don't be impressed I have SWS. If it were my DD, I would mention the symptoms and not give the teacher anything to google. Most people never heard of SWS... and symptoms can vary widely.

I never had seizures and attended elite private schools so people don't think I have cognitive issues unless they think all lawyers do

My birthmark was lasered off years ago and my glaucoma is under control: I have 20/20 vision with contacts.

FYI, I never considered having SWS as having special needs at least for me.

If you have considered getting the port wine stain treated, I would do it sooner than later.

Best wishes to the little one!

I would totally give you a hug if I could PP! My husband and I are geeky PhDs and we love her pws actually and she is having laser treatments (it is much lighter now), but we want her to have a rich intellectual life and would be proud even if she were a lawyer. Seriously, thank you! SWS is so rare and I get excited to know of a person with SWS who says something like "I never considered having SWS as having special needs at least for me." I hope my dd grows up with the same attitude!

Good for you! You escaped the stigma! No SN kid for you! Because you have a Ph.D and that means that should shield you from having a kid with cognitive delays. Guess what? There are plenty of parents on here with advanced degrees, my Ph.D self included, who also wanted all of that for their kid. You really need to watch your tone.

What exactly was the point of this? No one implied that having a Ph.D. would shield a child from any number of issues, both physical and cognitive (in fact, your chances of having a child with any number of issues increases with level of parents' education).

I am sorry you are so angry, but I don't see any "tone" in the original post or any follow on posts that need to be watched.

Matthew 7:5

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Wow, I am impressed! No seizures. I guess I am worried she will Google SWS and see the brain involvement cases and wonder about my dd. You have to admit, when you Google, you see the worst/scariest cases. My dd has been super fortunate.

I sent the teacher an email about her port-wine stain to make it clear we are comfortable/want it to be something that is normalized. She was like--Loh, not worried about that.". Hence my confusion and worry.

Don't be impressed I have SWS. If it were my DD, I would mention the symptoms and not give the teacher anything to google. Most people never heard of SWS... and symptoms can vary widely.

I never had seizures and attended elite private schools so people don't think I have cognitive issues unless they think all lawyers do

My birthmark was lasered off years ago and my glaucoma is under control: I have 20/20 vision with contacts.

FYI, I never considered having SWS as having special needs at least for me.

If you have considered getting the port wine stain treated, I would do it sooner than later.

Best wishes to the little one!

I would totally give you a hug if I could PP! My husband and I are geeky PhDs and we love her pws actually and she is having laser treatments (it is much lighter now), but we want her to have a rich intellectual life and would be proud even if she were a lawyer. Seriously, thank you! SWS is so rare and I get excited to know of a person with SWS who says something like "I never considered having SWS as having special needs at least for me." I hope my dd grows up with the same attitude!

Good for you! You escaped the stigma! No SN kid for you! Because you have a Ph.D and that means that should shield you from having a kid with cognitive delays. Guess what? There are plenty of parents on here with advanced degrees, my Ph.D self included, who also wanted all of that for their kid. You really need to watch your tone.

OP here, I am sorry you read this so negatively. I specifically put "medical special needs" in the title so to let people know the content and to try to avoid hurting or offending anyone.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Wow, I am impressed! No seizures. I guess I am worried she will Google SWS and see the brain involvement cases and wonder about my dd. You have to admit, when you Google, you see the worst/scariest cases. My dd has been super fortunate.

I sent the teacher an email about her port-wine stain to make it clear we are comfortable/want it to be something that is normalized. She was like--Loh, not worried about that.". Hence my confusion and worry.

Don't be impressed I have SWS. If it were my DD, I would mention the symptoms and not give the teacher anything to google. Most people never heard of SWS... and symptoms can vary widely.

I never had seizures and attended elite private schools so people don't think I have cognitive issues unless they think all lawyers do

My birthmark was lasered off years ago and my glaucoma is under control: I have 20/20 vision with contacts.

FYI, I never considered having SWS as having special needs at least for me.

If you have considered getting the port wine stain treated, I would do it sooner than later.

Best wishes to the little one!

I would totally give you a hug if I could PP! My husband and I are geeky PhDs and we love her pws actually and she is having laser treatments (it is much lighter now), but we want her to have a rich intellectual life and would be proud even if she were a lawyer. Seriously, thank you! SWS is so rare and I get excited to know of a person with SWS who says something like "I never considered having SWS as having special needs at least for me." I hope my dd grows up with the same attitude!

You are welcome! My SWS was always a bigger deal for my parents than me. Like many parents they wanted to know "why their child" and how they can make everything better for me. They were always over protective which is understandable but exasperating for me nevertheless.

I did have many laser treatments and many eye surgeries including a shunt implanted into one of my eyes to control the glaucoma but the SWS did not affect me at school. More importantly socially, I look normal once the birthmark was treated. No one can tell I "have" anything. I am married to another Ivy educated lawyer and have a kid. So I wouldn't let the stories on the internet about SWS scare you. Your DD can have a perfectly normal life.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Wow, I am impressed! No seizures. I guess I am worried she will Google SWS and see the brain involvement cases and wonder about my dd. You have to admit, when you Google, you see the worst/scariest cases. My dd has been super fortunate.

I sent the teacher an email about her port-wine stain to make it clear we are comfortable/want it to be something that is normalized. She was like--Loh, not worried about that.". Hence my confusion and worry.

Don't be impressed I have SWS. If it were my DD, I would mention the symptoms and not give the teacher anything to google. Most people never heard of SWS... and symptoms can vary widely.

I never had seizures and attended elite private schools so people don't think I have cognitive issues unless they think all lawyers do

My birthmark was lasered off years ago and my glaucoma is under control: I have 20/20 vision with contacts.

FYI, I never considered having SWS as having special needs at least for me.

If you have considered getting the port wine stain treated, I would do it sooner than later.

Best wishes to the little one!

I would totally give you a hug if I could PP! My husband and I are geeky PhDs and we love her pws actually and she is having laser treatments (it is much lighter now), but we want her to have a rich intellectual life and would be proud even if she were a lawyer. Seriously, thank you! SWS is so rare and I get excited to know of a person with SWS who says something like "I never considered having SWS as having special needs at least for me." I hope my dd grows up with the same attitude!

Good for you! You escaped the stigma! No SN kid for you! Because you have a Ph.D and that means that should shield you from having a kid with cognitive delays. Guess what? There are plenty of parents on here with advanced degrees, my Ph.D self included, who also wanted all of that for their kid. You really need to watch your tone.

Anonymous wrote:Wow, I am impressed! No seizures. I guess I am worried she will Google SWS and see the brain involvement cases and wonder about my dd. You have to admit, when you Google, you see the worst/scariest cases. My dd has been super fortunate.

I sent the teacher an email about her port-wine stain to make it clear we are comfortable/want it to be something that is normalized. She was like--Loh, not worried about that.". Hence my confusion and worry.

My kid also has a rare condition, that when googled by non-experts, would result in misleading information about him. For this reason, the name is on a need to know basis.

Anonymous wrote:

Anonymous wrote:Wow, I am impressed! No seizures. I guess I am worried she will Google SWS and see the brain involvement cases and wonder about my dd. You have to admit, when you Google, you see the worst/scariest cases. My dd has been super fortunate.

I sent the teacher an email about her port-wine stain to make it clear we are comfortable/want it to be something that is normalized. She was like--Loh, not worried about that.". Hence my confusion and worry.

Don't be impressed I have SWS. If it were my DD, I would mention the symptoms and not give the teacher anything to google. Most people never heard of SWS... and symptoms can vary widely.

I never had seizures and attended elite private schools so people don't think I have cognitive issues unless they think all lawyers do

My birthmark was lasered off years ago and my glaucoma is under control: I have 20/20 vision with contacts.

FYI, I never considered having SWS as having special needs at least for me.

If you have considered getting the port wine stain treated, I would do it sooner than later.

Best wishes to the little one!

I would totally give you a hug if I could PP! My husband and I are geeky PhDs and we love her pws actually and she is having laser treatments (it is much lighter now), but we want her to have a rich intellectual life and would be proud even if she were a lawyer. Seriously, thank you! SWS is so rare and I get excited to know of a person with SWS who says something like "I never considered having SWS as having special needs at least for me." I hope my dd grows up with the same attitude!

Anonymous wrote:Wow, I am impressed! No seizures. I guess I am worried she will Google SWS and see the brain involvement cases and wonder about my dd. You have to admit, when you Google, you see the worst/scariest cases. My dd has been super fortunate.

I sent the teacher an email about her port-wine stain to make it clear we are comfortable/want it to be something that is normalized. She was like--Loh, not worried about that.". Hence my confusion and worry.

Don't be impressed I have SWS. If it were my DD, I would mention the symptoms and not give the teacher anything to google. Most people never heard of SWS... and symptoms can vary widely.

I never had seizures and attended elite private schools so people don't think I have cognitive issues unless they think all lawyers do

My birthmark was lasered off years ago and my glaucoma is under control: I have 20/20 vision with contacts.

FYI, I never considered having SWS as having special needs at least for me.

If you have considered getting the port wine stain treated, I would do it sooner than later.

Best wishes to the little one!

Does the school know the diagnosis? My DD has another syndrome that can include cognitive issues, but she also doesn't appear to have any. When she started school, we gave them info about specific medical issues they needed to know, but purposely did not share the diagnosis until much later when they knew my child well and it was relevant they know it for other reasons.

If they do already know, I agree with 12:19.

Is there something the teacher needs to know about things she needs to be aware of from a medical perspective? If not, do not overthink it.

Children at the preschool my children went to (church based in DC) had a variety of medical items teachers needed to deal with: food allergies, children with vision problems (patches and glasses), casts, braces, diabetics.

OP, just be very clear with the teacher and spell out her exact symptoms. I'd even say something like, "While some kids with this syndrome have cognitive delays, my daughter doesn't."

Wow, I am impressed! No seizures. I guess I am worried she will Google SWS and see the brain involvement cases and wonder about my dd. You have to admit, when you Google, you see the worst/scariest cases. My dd has been super fortunate.

I sent the teacher an email about her port-wine stain to make it clear we are comfortable/want it to be something that is normalized. She was like--Loh, not worried about that.". Hence my confusion and worry.

Sounds like she has Sturge Weber Syndrome?

Does she have seizures?

Glaucoma and the birthmark isn't going to make anyone think your DD has cognitive issues although you may want to speak to the teacher about social issues and teasing arising from the birthmark.

My dd with a rare syndrome is starting daycare/preschool. I broke down the medical aspect about her glaucoma in writing--my dd has had surgeries but her sight is fine. I also let the teacher know we were very open about talking about dd's large port-wine stain birthmark. The teacher contacted me and wanted to talk more. My dd was also a preemie and a bit delayed--walking at 19 months type (17months adjusted), so hitting milestones but on the end of normal--and she actually ahead when it comes to social-emotional development. How do I communicate with the teacher that she doesn't have cognitive special needs even though she has medical special needs? I realize the teacher might not think this but I know we are going to run into it sooner rather than later (even if I get a call because my opinionated dd tells off the teacher first--She has a medical condition, but she will let you know where you stand!)