Any special needs kiddos?

icindi

icindi

New member
I think I saw someone mentioned a son on the autism spectrum.

We have one son, Jared, 16, on the autism spectrum. He is challenging but we love him! We have found an amazing school for him and it has helped tremendously.

We also have one medically complex kid. Ben is 15 and has eosinophilic gastroenteritis. It's autoimmune ands body has a reaction to food. He can eat 3 foods, gets a special formula through a feeding tube. He also has growth hormone deficiency, migraines, and some other more normal kid allergies and asthma. He also has dyslexia and dysgraphia, so we navigate the learning disability issues too. It's been a challenge, especially before he was diagnosed and was so sick. But he's a happy, otherwise healthy and you'd never pick him out of a crowd! I think the shared trials have made us grow closer to him.
 
Cindi - all 3 of mine are considered special needs, though sometimes I tend to forget that they are. My oldest has ADHD (as do I and we very much share the same type of symptoms so we're quite the pair sometimes lol), so the military considers him special needs - though his need I think is probably the one that requires the least appointments and such.
Our middle son has a very "sensitive system" they say. He actually is being watched for eosinophilic gastroenteritis, not nearly that severe as you described your son having. He has some very odd allergies and asthma, breaks out in hives randomly and has IBS (they feel like his allergies and IBS are likely to lead to EOE it seems) and eczema.
Then Addy has microcephaly and brain atrophy that we haven't ever been able to understand the cause of as well as hearing loss (mostly unilateral in her left ear that she wears a hearing aid in). She is wearing glasses now as well. When she was little she had what they thought were staring seizures as well, and low carntin levels that led to very low blood sugar throughout the day without monitoring - but her body corrected that. Now she is having some memory/learning issues that we are trying to get to the bottom of, the neurologist isn't sure if she is having mild seizures or brain interruptions perhaps, or just a learning disability from the atrophy that is just now showing.
I definitely agree - there are times it is a bit difficult, and sometimes I feel like maybe we need an assistant to keep up with all the appointments and juggling of doctors and tests/results, but it definitely has been something that has grown us closer together. And they are all very happy kids.
 
Mine will be 3 in May and he was diagnosed OFFICIALLY last October with Autism Spectrum Disorder. We had a "hunch" this is what he had by alot of the characteristics he displayed and he's now in a transition group until he turn 3 and then he goes to a special school after that. After 4 sessions, he has shown improvement and we are thrilled. He has shown emotion/expressions around us and toward us (such as smiles, hugs, etc....no kisses or talking YET ;) ) so this is bittersweet for us since we want him to be a successful lil man now and for what the future may hold for him.

:wub: :hugs:
 
clucaswvu04 said:
Cindi - all 3 of mine are considered special needs, though sometimes I tend to forget that they are. My oldest has ADHD (as do I and we very much share the same type of symptoms so we're quite the pair sometimes lol), so the military considers him special needs - though his need I think is probably the one that requires the least appointments and such.
Our middle son has a very "sensitive system" they say. He actually is being watched for eosinophilic gastroenteritis, not nearly that severe as you described your son having. He has some very odd allergies and asthma, breaks out in hives randomly and has IBS (they feel like his allergies and IBS are likely to lead to EOE it seems) and eczema.
Then Addy has microcephaly and brain atrophy that we haven't ever been able to understand the cause of as well as hearing loss (mostly unilateral in her left ear that she wears a hearing aid in). She is wearing glasses now as well. When she was little she had what they thought were staring seizures as well, and low carntin levels that led to very low blood sugar throughout the day without monitoring - but her body corrected that. Now she is having some memory/learning issues that we are trying to get to the bottom of, the neurologist isn't sure if she is having mild seizures or brain interruptions perhaps, or just a learning disability from the atrophy that is just now showing.
I definitely agree - there are times it is a bit difficult, and sometimes I feel like maybe we need an assistant to keep up with all the appointments and juggling of doctors and tests/results, but it definitely has been something that has grown us closer together. And they are all very happy kids.
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Cheryl, I'm sorry you are dealing with similar issues (and more) but I can't believe you know what EoE and EGE are! Where do you live? So happy that more docs know about the diseases and are diagnosing it so people can get help. We spent 15 months of our son screaming in pain and covered in eczema and not tolerating any food before we got a diagnosis (and we had to go 240 miles to get one). I hope you can sort things out! I know it's not easy.
ADHD can be difficult too, though I have no personal experience with that one. And microcephaly sounds really difficult. Sigh. You do have a lot going on. Hugs! FWIW, my son with LD and EGE also has memory issues. He could not ever learn his multiplication facts, despite an extra year working on them. He also loses cognitive ability (with energy) throughout the day and can't do anything that requires a lot of brain function in the afternoon. They think he might have mitochondrial disease, too. My point being there can be many, many causes.... How old are your kiddos? I have 4 - 15.5 to 19. Two are typical. Hooray for easy kids!
 
Sweeet said:
Mine will be 3 in May and he was diagnosed OFFICIALLY last October with Autism Spectrum Disorder. We had a "hunch" this is what he had by alot of the characteristics he displayed and he's now in a transition group until he turn 3 and then he goes to a special school after that. After 4 sessions, he has shown improvement and we are thrilled. He has shown emotion/expressions around us and toward us (such as smiles, hugs, etc....no kisses or talking YET ;) ) so this is bittersweet for us since we want him to be a successful lil man now and for what the future may hold for him.

:wub: :hugs:
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Hooray for early diagnosis and improvement! Our son wasn't diagnosed with autism until he was 11. We adopted him from foster care and he came to us at 10.5. I look at how much he has improved over the years and think that if he had proper diagnosis and help earlier he would be so much farther by now.... But he is still not where he should be for his chronological age. We keep telling ourselves he has his own growth curve and we are changing the trajectory of his life, even if it's not the trajectory we would have hoped for! It is hard to grieve the loss of dreams for our kids, though. Hopefully your little one will talk soon - don't give up yet!
 
I have two kids. The oldest, my girl is 10 and is diagnosed with ADHD. My son was diagnosed on the Autism Spectrum at 18 months. He is now 5. I cannot tell you how good / lucky it has been for his early diagnosis and early treatment. It did wonders for our son. He is in kindergarten without an aide. So keep up the good work ladies and look for all the greatness that our kids have. Celebrate all the small things!!!
 
My son has epilepsy. He was diagnosed when he was 4.

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No kids of my own but I have a visual and hearing impairment plus study disability & inclusion studies


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My daughter Skyler has an eye disorder, she is captain of her dance team and doing a duet which are reserved for the top dancers. With her eye disorder she shouldn't be able to spot for turns let alone do fortes which is pretty much required at her level of dance. She is proof you can over come the odds against you. She has duanes syndrome which basically is her eye muscle and nerve is not connected to her brain on one side and she can not turn it out or control it through any nerve connection. I've attached a little info in it. She use to be very embarrassed by it but with work has learned to tilt her head and make it virtually impossible to detect. It was tough when she was little as other kids called her the cross eyed girl etc. She is learning to use it as a platform to teach others to be more aware of how you treat others and excepting of differences. I know not the everyday struggle some of you may be facing but honestly for years it was everyday as it greatly effected her self worth and abilities to do things we take for granted, such as hit a baseball etc. She can not see to her left without fully turning her head. :(
http://www.strabismus.org/Duane_Syndrome.html
 
icindi said:
Cheryl, I'm sorry you are dealing with similar issues (and more) but I can't believe you know what EoE and EGE are! Where do you live? So happy that more docs know about the diseases and are diagnosing it so people can get help. We spent 15 months of our son screaming in pain and covered in eczema and not tolerating any food before we got a diagnosis (and we had to go 240 miles to get one). I hope you can sort things out! I know it's not easy.
ADHD can be difficult too, though I have no personal experience with that one. And microcephaly sounds really difficult. Sigh. You do have a lot going on. Hugs! FWIW, my son with LD and EGE also has memory issues. He could not ever learn his multiplication facts, despite an extra year working on them. He also loses cognitive ability (with energy) throughout the day and can't do anything that requires a lot of brain function in the afternoon. They think he might have mitochondrial disease, too. My point being there can be many, many causes.... How old are your kiddos? I have 4 - 15.5 to 19. Two are typical. Hooray for easy kids!
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We are in VA at the moment :) military family so who knows where the adventure will take us next - but actually both our parents are here so this is such a huge blessing to be "home" as both our dads retired from the military in this area too...it is so amazing to have both grandparents close for a couple years! My kids are 9(almost 10), 8, and 6.
 
ellasspace said:
My daughter Skyler has an eye disorder, she is captain of her dance team and doing a duet which are reserved for the top dancers. With her eye disorder she shouldn't be able to spot for turns let alone do fortes which is pretty much required at her level of dance. She is proof you can over come the odds against you. She has duanes syndrome which basically is her eye muscle and nerve is not connected to her brain on one side and she can not turn it out or control it through any nerve connection. I've attached a little info in it. She use to be very embarrassed by it but with work has learned to tilt her head and make it virtually impossible to detect. It was tough when she was little as other kids called her the cross eyed girl etc. She is learning to use it as a platform to teach others to be more aware of how you treat others and excepting of differences. I know not the everyday struggle some of you may be facing but honestly for years it was everyday as it greatly effected her self worth and abilities to do things we take for granted, such as hit a baseball etc. She can not see to her left without fully turning her head. :(
http://www.strabismus.org/Duane_Syndrome.html
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What an amazing girl you have! I love that she is using it as a platform to help teach others about how to treat others and accept differences <3 truly a gem! I think that any struggle, regardless of the "severity" can really be a huge thing, because like you said it really can affect the day to day - what a testimony on how you guys handled it and thrived through the obstacle. With all 3 of my kiddos having something that needs sometimes a little extra support, we talk about that a lot in our house it seems. And it often comes up that everyone - every single one of their friends has something that they probably struggle a bit with or need a little extra help with, whether for a little bit of time or a longer length of time and how we should encourage each other and help all be the tide that raises all the ships together...I have no idea whether it really sinks in for them yet, but I hope so. I hope one day my kids are helping to educate other kids like your girl is <3
 
My almost 10 year old, Ben, has Smith-Magenis Syndrome. It's a genetic disorder that is the cause of his high functioning autism, ADHD, sleep disorder, motor planning disorder (mostly resolved, since he's had speech and physical therapy for it since he was 2), and other issues. Many kids with SMS also have intellectual disabilities, but he doesn't.

Our biggest challenges these days are behavioral, especially when Ben gets tired. We can always tell when he needs a nap or bedtime because he gives off signs as obvious as a toddler, melting down about everything and sometimes hitting. Unfortunately, being tired is a lifelong struggle for people with SMS. We're also working a lot on social skills with him.

Ben has been at our neighborhood school since kindergarten, and it's a great place for him. It's big enough that they have a special ed teacher and aide at every grade, so Ben can go back and forth between the main classroom and the special ed room for different things. But it's also small enough (80-100 kids per grade) that everyone can know each other and there's a good sense of community. He has 2 more years there, and we're starting to think about what comes afterward for him. As we're preparing our oldest to transition to middle school next year, we've been coming to the realization that it wouldn't be a good fit for Ben. We're starting to think about what our options are within and outside the public schools and whether that might have to include moving or me going back to work more hours (right now I'm part time at a school, so I'm off any time the kids are).
 
I'm actually taking my son to ASD testing tomorrow. He's 4.5 yo and has always been very well-behaved, but his teachers have noticed things they want to double-check on. He doesn't make a whole lot of eye contact, repeats what he says, and doesn't like to mingle with other kids -- it's the social aspect they're looking at.

I'm worried as I have always just attributed those quirks of his as him being a child. He's much better at home but once you remove him from his environment he gets nervous. I don't know how they're going to determine if he's on the spectrum if he doesn't act like his normal self.
 
clucaswvu04 said:
What an amazing girl you have! I love that she is using it as a platform to help teach others about how to treat others and accept differences <3 truly a gem! I think that any struggle, regardless of the "severity" can really be a huge thing, because like you said it really can affect the day to day - what a testimony on how you guys handled it and thrived through the obstacle. With all 3 of my kiddos having something that needs sometimes a little extra support, we talk about that a lot in our house it seems. And it often comes up that everyone - every single one of their friends has something that they probably struggle a bit with or need a little extra help with, whether for a little bit of time or a longer length of time and how we should encourage each other and help all be the tide that raises all the ships together...I have no idea whether it really sinks in for them yet, but I hope so. I hope one day my kids are helping to educate other kids like your girl is <3
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Thank you Cheryl this didn't happen over night she snuggled with it for years and met an amazing woman her freshman year who was her dance director. She took her under her wing and mentored her and sometimes was very tough, but showed her she COULD overcome and use this for good and not let it rule her. Sky is a tough cookie and this tough lovemotivated her to overcome and beat the odds against her.
 
Good luck finding a diagnosis Zanthia and Anna. It is definitely hard to accept a "label" but I found it helps direct me in how to help our son, and that's a good thing. There will be lots of parent questionnaires on behavior, so you will have input, too. It's a pretty thorough process, IMO.

Rachel, it can be hard to find the right fit at school. So glad he's had such a good experience so far - that's awesome! I keep telling my husband that we will do what's best for each kid...whatever that is. He's very much on board about alternative educating (home schooling and special schools or public or private school) now, but there was a time when he resisted anything other than what was the 'norm'. It's been a learning process! And if what you choose doesn't quite work, you can always adapt things or try another approach.

Jennifer, sounds like you've had a tough time of things. But I know you completed your degree and are continuing on in your education, so it sounds like nothing is holding you back - awesome! You go girl!

I think people are so much more accepting of differences now than they used to be. I remember a kit being duct taped to his chair in first grade when I was a kid, and that would never happen today to an active child!! It does help when we all teach our kids to be accepting. I think you are right on the money that everyone has their "thing" they struggle with Cheryl. I tell my kids that all the time!!! Sometimes it's hard to remember that when they are struggling though (and to be honest, we all feel that way at times, like we have much more to deal with than other people!).

Ella, so cool that you daughter has overcome her obstacles and educated others in the process. She is likely mature beyond her years!

Kianna, epilepsy can be scary! I hope you have it well controlled and that it won't keep him from driving and doing other things as an adult. And if it does, he will adapt I'm sure. It's not easy sometimes!!
 
jnac916 said:
I have two kids. The oldest, my girl is 10 and is diagnosed with ADHD. My son was diagnosed on the Autism Spectrum at 18 months. He is now 5. I cannot tell you how good / lucky it has been for his early diagnosis and early treatment. It did wonders for our son. He is in kindergarten without an aide. So keep up the good work ladies and look for all the greatness that our kids have. Celebrate all the small things!!!
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Hooray for progress and seeing the joy in the small things! I sometimes need to be reminded of that!!
 
icindi said:
Kianna, epilepsy can be scary! I hope you have it well controlled and that it won't keep him from driving and doing other things as an adult. And if it does, he will adapt I'm sure. It's not easy sometimes!!
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Thank you. It is not quite controlled at night yet. We're on our 5th or 6th medicine and there's not many medicines left to try. He's got some sleep studies coming up to help gain more information to what's going on at night. He does have moderate sleep apnea, but has had his tonsils and adnoids removed. He's still a very restless sleeper and that is not conducive to controlling those night seizures. Thank you
 
One of my sons has moderate chemical sensitities, generalised anxiety disorder, is probably on the spectrum, probably has ASD (diagnosis but not yet official), probably coeliac (me too and maybe my other son).

I'm not going to pursue "official" diagnoses on coeliac because I don't want to put him through the biopsy procedure, he can do that himself if he chooses when he's an adult. In the meantime, we've reevaluated our eating habits and eliminated as many additives, sugar and gluten from our diet as possible.

Still of two minds about pursuing autism diagnosis. given his age now, intervention for autism is ineffective .... and non-existent anyway LOL but for ASD there is still a possibility that occupational therapy may assist so maybe. I haven't decided yet what to do in that regard, but we're really fortunate that he loves circus training and since he started doing circus skills training last year he has made huge progress.
 
My heart goes out to all of you ladies and your sweet children. You all make my own problems look so much easier.

We have chemical imbalance issues in our family. I have them and fight depression as well. I tend to want to stay home all the time and that sort of thing even though I do enjoy being out and about. And my sweet daughter is dealing with all kinds of fears and anxieties as well as depression. She also has Fibromyalgia and a quirky heart beat that the doctor says isn't anything to worry about at this point. But the Fibro and her fears and anxieties really mess things up for her.

Someone mentioned the dreams we have for our kids...my heart hurts for all my daughter has missed out on in her life. Her social life has been almost nothing. No dating, no school activities, no social functions, very few friends. But she is an amazing person. Extremely smart. Very creative and so talented. Unless you know her well, you'd never know she has problems because hers is one of those hidden illnesses. We love her and we are proud of the things she has been able to accomplish. But her life has been hard for her.

Anyway, my heart goes out to all of you. You sound like good, loving moms. Keep on hanging in there.
 
My sister and nephew have cerebral palsy. It is kind of weird since it is not genetic. My sisters was from a brain injury during the birthing process. She has a mild case compared to most. She had delayed development (didn't walk until she was 3) and her motor skills like balance and speech needed a lot of work. As an adult she is fully functional. She is married with two kids, drives, does everything. When she is sick or really tired you can see her motor skill weakness but other than that most people don't even know. My nephew is very much like my sister. He is almost 9 and still uses a walker for a lot of the day but has been working to walk without it and does fairly well. His confidence is building. He has the motor skill issues (balance and speech mostly). As an infant he had trouble focusing his eyes and so they rolled alot, he had trouble sitting up by himself and holding up his head. He has done a spider and army crawl for many years and has come a long way. He does physical and speech therapy regularly. He is very smart and has a great sense of humor. He is one awesome little dude. I think eventually he will be where my sister is.
 
My youngest daughter (now 14) has a rare form of epilepsy and global developmental delay.

I saw she was delayed pretty well from birth but it took years (until she started school) for my concerns to be taken seriously and her epilepsy was not diagnosed until she was 8. It was only because she still slept with us a lot that we noticed her (night time) seizures at this age. She was seen and diagnosed very quickly at this point (which thankfully coincided with our appeal to get her a statement of special needs - IEP - to get her additional help at school). She also had a lot of speech therapy and memory training to try and help with her language comprehension and recall.

It is difficult to know what were causing her delays before the seizures were spotted (she was late to crawl, walk, talk etc) the simplest reading lists were impossible and her memory is dreadful, as is her ability to follow complex (eg several step instructions). She can't make notes whilst the teacher is talking for example either. She has a 1:1 assistant for most of her school lessons who takes notes and will help write down answers too (she also finds it difficult to keep her mind on track whilst writing her thoughts down) and I am assured she will have a reader and extra time during examinations, although not a writer, so I dare say she will struggle to get very good grades at all.

She had 24 hour eeg studies which confirmed the type of epilepsy she has. Fortunately she has no other medical complications (that have been diagnosed) so I think that the severity of her issues with this syndrome is mild compared to others.

The syndrome my daughter has is a rare form of epilepsy called ESES (electrical status epilepticus during sleep). There is a "constant and severe deterioration in neuropsychological functions associated with the disorder, and language capacity can be particularly affected. Patients also may show a profound decrease in intellectual level, poor memory, impaired temporospatial orientation, reduced attention span, hyperkinesis, aggressive behavior, and even psychosis".

We have spent years trying to get a mix of medications to help. Now at 14 it may be that she is outgrowing it with puberty (which experts say often happens) although the impact on her brain, memory and learning will never be able to be recovered.

The hardest thing has been coping with the mood swings (often due to her medication), the social difficulties she experiences at school (she is also emotionally immature) and the acceptance of a different type of future for her than we would anticipate for a neurologically 'normal' child.
 
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fruitysuet said:
My youngest daughter (now 14) has a rare form of epilepsy and global developmental delay.

I saw she was delayed pretty well from birth but it took years (until she started school) for my concerns to be taken seriously and her epilepsy was not diagnosed until she was 8. It was only because she still slept with us a lot that we noticed her (night time) seizures at this age. She was seen and diagnosed very quickly at this point (which thankfully coincided with our appeal to get her a statement of special needs - IEP - to get her additional help at school). She also had a lot of speech therapy and memory training to try and help with her language comprehension and recall.

It is difficult to know what were causing her delays before the seizures were spotted (she was late to crawl, walk, talk etc) the simplest reading lists were impossible and her memory is dreadful, as is her ability to follow complex (eg several step instructions). She can't make notes whilst the teacher is talking for example either. She has a 1:1 assistant for most of her school lessons who takes notes and will help write down answers too (she also finds it difficult to keep her mind on track whilst writing her thoughts down) and I am assured she will have a reader and extra time during examinations, although not a writer, so I dare say she will struggle to get very good grades at all.

She had 24 hour eeg studies which confirmed the type of epilepsy she has. Fortunately she has no other medical complications (that have been diagnosed) so I think that the severity of her issues with this syndrome is mild compared to others.

The syndrome my daughter has is a rare form of epilepsy called ESES (electrical status epilepticus during sleep). There is a "constant and severe deterioration in neuropsychological functions associated with the disorder, and language capacity can be particularly affected. Patients also may show a profound decrease in intellectual level, poor memory, impaired temporospatial orientation, reduced attention span, hyperkinesis, aggressive behavior, and even psychosis".

We have spent years trying to get a mix of medications to help. Now at 14 it may be that she is outgrowing it with puberty (which experts say often happens) although the impact on her brain, memory and learning will never be able to be recovered.

The hardest thing has been coping with the mood swings (often due to her medication), the social difficulties she experiences at school (she is also emotionally immature) and the acceptance of a different type of future for her than we would anticipate for a neurologically 'normal' child.
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Sounds really difficult. Hugs! Glad to hear she may be outgrowing it. But it stinks that the effects on the brain can never be reversed.

Jan, mental health issues are really difficult. I've watched some families really struggle. Don't downplay your daughter's difficulties. But I love your attitude that she has a good life despite the difficulties! Sometimes mental health issues are more difficult to deal with because of stereotypes and misunderstandings.

I didn't know that cerebral palsy could be overcome to some degree, but that is fantastic to hear! Hoping your nephew progresses as much as your sister has!

We were driving home from an outing on Saturday and saw a young man lying on the sidewalk. We were unsure whether he was intentionally lying there or not so stopped to check. He was 14 or 15 and had a seizure and had fallen on the sidewalk. Luckily he was in front of his home and we were able to find his parents by knocking on the door. He scraped up his face a little and probably suffered a good knock to the head, so maybe a concussion, too. The Mom said she was just inside for a few minutes to start dinner and was thankful we found him. Scary! Our adrenaline was definitely pumping! It was so weird that it happened after this thread and just talking about seizures, because how often in your life do you happen upon someone, unattended, having a seizure?
 
My son also has epilepsy. He had a relatively mild childhood form that many kids grow out of and I'm not sure I'd call him special needs since he doesn't really have any "special needs" other than medication. He was seizure free for a while but we're going in for more testing next week because of some possible seizures recently.
 
icindi said:
We were driving home from an outing on Saturday and saw a young man lying on the sidewalk. We were unsure whether he was intentionally lying there or not so stopped to check. He was 14 or 15 and had a seizure and had fallen on the sidewalk. Luckily he was in front of his home and we were able to find his parents by knocking on the door. He scraped up his face a little and probably suffered a good knock to the head, so maybe a concussion, too. The Mom said she was just inside for a few minutes to start dinner and was thankful we found him. Scary! Our adrenaline was definitely pumping! It was so weird that it happened after this thread and just talking about seizures, because how often in your life do you happen upon someone, unattended, having a seizure?
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How wonderful that you stopped to help. His mother must have been so grateful too.

It's hard dealing with any special needs, somehow though I always feel that I am being judged for my DD's behaviour because epilepsy is one of those 'hidden' disabilities. It's not so bad now, but when she was 8 or 9 and still acting like a 4 year old I was very aware of the judging looks from people when we were out and about.
 
We deal with people not understanding all the time. I think that is one of the hardest things with these hidden illnesses. People are very quick to judge and to tell you what you ought to be doing for your child. How you should be making them do this or that or the other. I'm sorry, but it just doesn't work that way. You can't MAKE them do anything they are unable to do. You have to find another way to deal with it and help them be as normal as possible. But you can't MAKE anything happen. Sometimes I feel very alone in our struggles when it comes to family/friend support.
 
fruitysuet said:
My youngest daughter (now 14) has a rare form of epilepsy and global developmental delay.

I saw she was delayed pretty well from birth but it took years (until she started school) for my concerns to be taken seriously and her epilepsy was not diagnosed until she was 8. It was only because she still slept with us a lot that we noticed her (night time) seizures at this age. She was seen and diagnosed very quickly at this point (which thankfully coincided with our appeal to get her a statement of special needs - IEP - to get her additional help at school). She also had a lot of speech therapy and memory training to try and help with her language comprehension and recall.

It is difficult to know what were causing her delays before the seizures were spotted (she was late to crawl, walk, talk etc) the simplest reading lists were impossible and her memory is dreadful, as is her ability to follow complex (eg several step instructions). She can't make notes whilst the teacher is talking for example either. She has a 1:1 assistant for most of her school lessons who takes notes and will help write down answers too (she also finds it difficult to keep her mind on track whilst writing her thoughts down) and I am assured she will have a reader and extra time during examinations, although not a writer, so I dare say she will struggle to get very good grades at all.

She had 24 hour eeg studies which confirmed the type of epilepsy she has. Fortunately she has no other medical complications (that have been diagnosed) so I think that the severity of her issues with this syndrome is mild compared to others.

The syndrome my daughter has is a rare form of epilepsy called ESES (electrical status epilepticus during sleep). There is a "constant and severe deterioration in neuropsychological functions associated with the disorder, and language capacity can be particularly affected. Patients also may show a profound decrease in intellectual level, poor memory, impaired temporospatial orientation, reduced attention span, hyperkinesis, aggressive behavior, and even psychosis".

We have spent years trying to get a mix of medications to help. Now at 14 it may be that she is outgrowing it with puberty (which experts say often happens) although the impact on her brain, memory and learning will never be able to be recovered.

The hardest thing has been coping with the mood swings (often due to her medication), the social difficulties she experiences at school (she is also emotionally immature) and the acceptance of a different type of future for her than we would anticipate for a neurologically 'normal' child.
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HUGS. Epilepsy is hard. We are going through some testing to learn if they are affecting his memory retention. Much like your daughter my son has difficulty with a string of steps and general memory retention.

Best wishes that your daughters are going away now.
 
icindi said:
We were driving home from an outing on Saturday and saw a young man lying on the sidewalk. We were unsure whether he was intentionally lying there or not so stopped to check. He was 14 or 15 and had a seizure and had fallen on the sidewalk. Luckily he was in front of his home and we were able to find his parents by knocking on the door. He scraped up his face a little and probably suffered a good knock to the head, so maybe a concussion, too. The Mom said she was just inside for a few minutes to start dinner and was thankful we found him. Scary! Our adrenaline was definitely pumping! It was so weird that it happened after this thread and just talking about seizures, because how often in your life do you happen upon someone, unattended, having a seizure?
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Bless your heart. My son is almost 11 and I sit outside while they play and I'm sure I look like the "weird" mom because people can't "tell" he has seizures.
 
DawnMarch said:
My son also has epilepsy. He had a relatively mild childhood form that many kids grow out of and I'm not sure I'd call him special needs since he doesn't really have any "special needs" other than medication. He was seizure free for a while but we're going in for more testing next week because of some possible seizures recently.
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Best wishes on the testing.
 
Jan Merkley said:
We deal with people not understanding all the time. I think that is one of the hardest things with these hidden illnesses. People are very quick to judge and to tell you what you ought to be doing for your child. How you should be making them do this or that or the other. I'm sorry, but it just doesn't work that way. You can't MAKE them do anything they are unable to do. You have to find another way to deal with it and help them be as normal as possible. But you can't MAKE anything happen. Sometimes I feel very alone in our struggles when it comes to family/friend support.
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I agree. It's hard when your child doesn't "look" sick. The teachers often forget that he has seizures and that he's going to need different things when things happen like getting hit in the head with a huge rock last year and the school didn't think I needed to be called.

Oh and I hate feeling alone with the things we go through. Especially since most friends and family often "forget" that we have a child that is going through this illness.
 
Okay on the note of epilepsy ..since I'm a poet I wrote a piece about our life with the illness. Hope it's okay to share here

background, before my son was diagnosed, he would tell me he felt like he was turning into a monster, he would have these small tremors and we didn't know they were seizures at the time. So that's where the monsters come from, and purple because that's epilepsy ribbon color.

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Beautiful poem, Kiana! Your son will someday be thankful for all you've done for him. It's so hard to watch your child hurt and not be able to take their pain away. :(

I totally get people not understanding and judging you! I lost some friends early on this journey before and after my son's diagnosis. But I found new ones who do understand. :) They are out there! Thankful for the internet and the ability to connect with people with similar issues all over the world. We even have a local Mom's group for kids with my son's disease. Sadly, there's a dozen families within an hour of me...but thankful for people who "get it."

Jan, I have one VERY oppositional 16.5 year old son adopted from tough places who is 6'-2" tall and on the autism spectrum and maybe at a 10 year old emotional maturity level. Can't get him to do ANYTHING he doesn't want to do!!!! I feel your pain!
 
Kiana, that poem is lovely and really captures the helplessness that many of us feel around that d*mn disease. Scientists still don't know very much about how the brain works and it's very frustrating that despite huge advances in many areas of medicine, they still kind of shrug their shoulders when it comes to epilepsy. We have been lucky to avoid (so far) the worst effects of seizures but it is still very scary.
 
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