Let's help each other learn about disabilities

[goofyandmore]

Hi, I have 3 children. My two oldest, 15 and 10 are boys and are typically developing, very bright children. My youngest, my daughter age 6 1/2 was born premature and has something called PVL (periventricular leukomalcia) (sp?). She has tiny cysts or damage in the white matter of her brain (the gray matter is for intelligence and white matter more for processing). She also has low muscle tone (walked late but can run, jump, swim unaided now) which causes her to tire easily. She has apraxia of speech which causes her to have problem motor planning to say a word. Basically she saids mama a lot and other words are very infrequently usually when she doesn't plan them out but they come spontaneously-but then you might not hear the word again for months. She looks adorable so to see her you might not realize that she has disabilities. But if you ask her a question, she might not process it and so she can't understand it. She has sensory integration dysfunction which causes her to seek out sensory stuff like things that feel differently (silk, rubber bottles, satin, etc). The sensory problem also causes her to get really upset if too many people are crowding around her or if there is sudden noise. So, she can't stay on long lines at disney not just for her sake but she could get upset at those around her and hit or bite. The MRI's are showing that the cysts are healing and disappearing. So, that is good but the problems will still be in the area of the healed cyst. As the cysts heal, her processing/understanding slowly improves. If I didn't have the disabilty pass at disney I would not be able to bring her. Most CM's were great but one doubted there was a problem even with my neurologist's letter.

I have one tip to share with all of you, especially those with children with autism, speech problems, etc. Essential Fatty Acids are great for the brain. In our case, we give our daughter proefa (made by Nordic Naturals) and when we first started it, she suddenly said her first purposeful word, then combined two words, etc. Many on one of my apraxia lists have stated that their children go from no talking to talking words and then sentences. Our problem is that our daughter seems to level out with it and then when I stop giving it and go back to it she has progress.

Anyway, efa's are suppose to be good for alot of ailments. So, please ask your doctors and look into it. My daughter was listed in a book called, The Late Talking Child which talks about how essential fatty acids can help kids with speech,etc.

Take care all, Carolyn from NJ

 

[LuvN~Travel]

Our daughter was born with Crouzon's Syndrome. It usually causes premature fusion of the head bones, and lack of proper growth of the face. It can also cause hydrocephelus, breathing problems, Chiari Syndrome(base of brain, top of spine problem), and hearing problems, all of which she has. She's had numerous surgeries, and we've pretty much stopped counting.
She also has Scoliosis, since her Chiari Syndrome and hydrocephalus acted in tandem and caused her to have a spinal fluid bubble in the middle of her back for several months, that went undetected, unfortunately. And, she also has been diagnosed with 'seizure' disorder. Basically hers are caused by some other health problem, i.e. lack of enough oxygen, surgery, hormones, etc. Luckily her last one was in February.
Her problems cause different problems over time though, and don't always give her problems. For example, when we went to WDW in '97, before her back surgery, she couldn't hardly walk the length of one of our local malls, due to having no energy due to the curvature of her spine. We definitely used a wheelchair for her then. Later that year she had back surgery, to put rods in to straighten up her spine a bit. (Went from a 60 degree curve to a 19 degree curve).
Two years later we visited a state amusemant park here, and she kept up with everyone (and even outwalked some of us)
But, then 4 years ago, during shunt replacement surgery for her hydrocephalus, she had two post op seizures, that left her with a mild stroke. It's taken a lot to get her back to more normal, and during that four years, she almost became a vegetable because her breathing problems got so serious. Even a CPAP machine wasn't helping.
Last year she had surgery on her face though, and now is actually breathing through her nose some for the first time in years and years. She's also getting more strength back now. We went to Six Flags two weeks ago, and she did great, considering how bad she was just a year ago. She's slow, but she kept at it, and we didn't use a wheelchair at all.
However, it was only one day, so when we go in November, we may use a wheelchair for her, if her strength gives out. Eight days straight may be a bit much.
It's amazing how many problems people can have, though, and how everyone here seems to be coping like TROOPERS! Each story is here is so uplifting.
Here's hoping each and everyone of you have a great weekend.
Kim

 

[3DisneyNUTS]

Kim your daughter is amazing. The will of children is amazing! They seem to battle anything put in front of them.
How old is she?
our son was diagnosed with hydranencephaly due to strokes in utero. It is similar to hydrocephalus except the brain tissues is missing rather than water on the tissue. He is going to be 4 and doing really well.

 

[LuvN~Travel]

Faith is 15 now. She is actually one of several on the Crouzon's site online. Crouzon.org. However, Penny the webmaster is redoing the site right now, so the bios are showing yet, or weren't when I checked the other day.
Faith's hydrocephalus does pretty well. She's on her fourth shunt, and with the exception of the third, they've done well. I've known some people tell of getting a new one everytime they blinked!
I knew there were other hydro problems out there, though you're the first one I've met.
She does have some school issues. She's spent so much time out of school over the years due to illness, that she is way behind. However, she's been on the homebound program for about 1.5 years and managed to catch up another two years or so.
We're not sure what she'll be doing as an adult, but we pretty much figure already that she'll need to live with us, and not on her own. Her seizures aren't frequent, but she can have breathing issues during them. Not fun!
It's amazing how fast they grow up, though. It hit me that if she hadn't repeated kindergarden, she'd be taking Driver's Ed this year!
Eeek!
Did the docs give you any kind of timeline to watch for your son? As far as milestones and such, considering how well is doing despite his problems?
Faith has pretty much defied all that the docs thought about her from the beginning. They didn't think she'd live past the age of four or five at first, and now we're facing adulthood!

Well I better get to bed, just spent two hours on here, my DH probably thinks I've forgotten where my bed is.
Have a great Sunday tomorrow.
Kim

 

[3DisneyNUTS]

We were told Chris would pass away before he turned one. If he lived past that he would not be able to do anything at all. He would eventually die from his disabilities. They expected extreme cerebral palsy and no cognition. They told us he would never recognize us as his parents, never feed himself, be blind, walk, talk etc.

The ironic thing is that Chris met his first year milestones on time. He has 2 cousins the same age and he was the first to walk. So he pretty much developed typically in all areas aside from speech. He does speak but has a delay about 1 1/2 years. It seems lately he is talking alot more so hopefully this will continue He is almost 4 and goes to an intergrated preschool. He loves school!

He did start having seizures right before his thrid birthday but they are controlled for almost a year now (Sept 7th he will be seizure free for 1 year)

He also defied many doctors in being so well. Now they joke about him going to college I pray for that LOL

 

[Michigan]

LuvN~Travel I too know several kids that have had shunt replacements. They seem to all go to one hospital so I think that says something. My girls go to a different hospital, the University of Michigan Hospital and they have been very shunt lucky Megan's shunt is 14 years old only replaced once when she was 2 months old and Michaela's shunt is the original shunt it is 6 years old.

 

[SueM in MN]

It's wonderful to come back here and read the stories that people are sharing about their/their children's disabilities.
I thought I'd better (finally) share too. I haven't had the time for a long, long post, but today I've got a little time to spare.
I've got 2 DDs. My oldest is not disabled; she is sweet, funny, caring, a talented artist and my best female friend. She's been an "old soul" since she was about 2 and 1/2. She's fiercely protective and loving of her younger sister, which is sometimes not the easiest thing in the world to be.

My youngest DD has multiple disabilities, including developmental delays, cerebral palsy (mostly spastic quad, but depending on who is seeing her at the time, also athetoid and mixed), ADD, seizure disorder. Her seizures began when she was about 10 and she has several a month. She used to be able to crawl and to walk with a walker, but as she grew bigger and her center of gravity changed, it got much harder and she uses a wheelchair for mobility now. She is able to walk only if someone holds her up. She doesn't speak, but understands quite well. When she was 3, we had a great speech therapist who presented many ways of communication. Of course, DD (being the rebel) chose the means that is probably the worst choice for someone with fine motor skill issues. She chose sign language as her main means of communication, but she just leaves out any parts that are too hard for her to do. As a consequence, people who know sign, know she is signing, but can't understand her. She also makes up signs - like the first time she saw girls with tap shoes at a dance receital, she called them "popcorn shoes". When she was just over 3, at WDW, she starting signing "throw water". It took us a while to figure out she was talking about the jumping fountains near Imagination. We call her language "K modified Sign". My older DD and I understand her quite well, but DD still doesn't get it. She has had a computerized communication device for about 6 years, but the first speech therapists who worked with her with it, insisted she "prove" she knew the words on it beffore they could go on her pages and they wanted only 2 words per page (despite the fact that before she got it, she was using a less sophisticated device with up to 30 words per page). She's really only started using the device in the last 3 years, when we got the teachers/staff to understand how to work with her.
She "over reacts" to emotional things - similar to the way that some people with strokes will break out in uncontrollable sobs or laughter to something that would normally elicit a small reaction. She also has a lot of compulsive behaviors (checking and rechecking things) and obsessions about how things should be. We call them "K's rules on Conduct" and, trust me, you don't want to break any of them. They are very complicated rules about who can sit where in what circumstances and if she's having a "Control Freak Day", she will actually dump someone off a chair if you are not sitting where you belong. (It's amazing how strong a 5 foot tall, 85 pound person in a wheelchair can be).
I had a horrible pregnancy (nausea, weight loss and heart problem) and that's probably what caused her brain damage. She was 2 weeks overdue, but was quite small for her gestational age.
I am an RN, who had been working in schools and doing general public health, which included doing developmental testing of infants and children. So, I kind of noticed very soon that there was something not quite right ("normal" newborns do not pick their heads up off the table when you lay them down). She was very social and developing well on social skills - in fact, she was so social that whenever we went out, she sort of enticed people to come to talk to her (even teenage boys - quite a feat for a baby). They usually guessed her age correctly, or even thought she was older than she was, but asked if she was premature, because she was very little. It took 18 months to get the doctor to realize there was something going on, and once he referred us to a neurologist, who confirmed a problem, we pretty much dropped off the face of the earth to him. He didn't believe in Early Childhood Education (pretty much, my DD was "damaged goods" to him and would stay that way). We dropped the doctor soon after and told him why.
She is what I would call a victim of IEPs and needing to prove you have mastered a goal before moving on. She picks things up quickly, but she has an uncanny ability to tell if someone is asking her to do something because they want to see if she can do it (we say she's allergic to tests). There is no way she is doing it if it's a test. As a result, she had the same goals continued for a long time since they could not "prove" that she had mastered them, even thought everyone agreed she knew them. I see that might happen a lot more with the "No Child Left Behind" stuff. If you can't prove you have mastered it to the satisfaction of the federal govenment standards, you will be sentenced to repeating the same things over and over. Her current teachers have seen a lot of kids caught in that Catch 22 situation....
She's not one of the first to do anything. She wants to watch everyone else do it before she tries. She's also something of a perfectionist, not a good thing to be if you have fine motor problems. Sometimes she surprises you though. When she was about 5 or 6, we were at WDW at a bird show and she drove her wheelchair into line to have a bird sit on her arm.
She's also quick to pick up on people treating her as if she doesn't understand - if you talk down to her, you will be totally ignored. She signed to me once that she wanted me to tell a day care provider that he was a "turkey" because he talked to her like a baby. He didn't make that mistake again.
She loves music, cute guys, new clothes (but not shopping), jokes and playing tricks on people. She's an excellent power wheelchair driver. She was totally afraid of it for the first 18 months she had it, but then took off and picked it up the fastest of anyone her PT has ever worked with. If there is a 3 inch space on each side of the wheelchair, she will figure out a way to make it thru. The thing we noticed is how differently she gets treated in the power wheelchair. When she's in the manual wheelchair, she gets a lot more of people talking to us, talking down to her. When she's in the power wheelchair, she's treated much more as a thinking person.
She can be incredibly sweet and fun or incredibly frustrating and irritating. If I could give her one ability, I'd give her speech because I know she's got a lot to say and it must be pretty frustrating sometimes to be her.

 

[pgjam]

Fragile X
I have 3 DS 18,16,14 & our youngest has Fragile X. This is a chromosome disorder that can cause learning dis thru mental retardation. Mike is mentally retarded, major anxierty & ADHD, he has severe low muscle tone & still cannot hold a pencil well enough to write his name. What is he? funny, kind, sensitive & a great guy. When we go to WDW I get the GAC pass because he cannot stand in line for a long period of time. He will push the person in front of him & get very anxious. He rides very few things & would love to stand at the base of Splash Mtn. all day & watch the logs come down. We have found that by encouraging him to try new things he can sometimes overcome his anxiety so now he can go to a play & a movie & we do not have to leave. He loves WDW & we'll be returning over MLK weekend. So if you see a cute 14 yr old at the base of Splash Mtn. jumping & flapping come say hi.
pgjam

 

[mickeymousefan]

DD2 was born with multiple birth defects. She had a malrotation in her small intestine which was surgically corrected at 3 weeks of age. Without early diagnosis, this defect can cause the small intestine to twist on itself (like twisting a garden hose) until it is completely blocked. A complete twist/blockage prevents digestion and causes the intestine to die. Too much dead tissue in your body can be toxic and result in death. Her second defect was a hole in the upper chambers of her heart. Shortly after her first birthday it was repaired through open heart surgery. Her third defect is waiting evaluation. She has a bifid uvula, which is an indicator of a submucosal cleft palate.
I was told by my pediatrician that multiple birth defects are a syndrome and usually genetic based. He said to expect some developmenatl delays and everything would be "wait and see" After 2 genetic evaluations and blood tests, I have no diagnosis for her.
Her only lasting problems are a major speech delay and mild SID. Other than that her motor skills and her cognitive skills are on target. She laughs alot and is a great kid.

 

[Anne MN]

Just a quick update on DD-

She just went to camp last week- had a great time- now the bummer- just talked to her cardiologist, have to see him on wed. she is so tired and no energy

I will have to have a sit-down with him- all the surgeries they have done have not improved her "side effect" from her corrections- the surgeons are out of options.

Now we are going to have to go and consult with either the Mayo clinic or the University about a heart transplant-

have not told DD what is in store for her yet- she was in the office when the Dr was explaining a little about putting a stint inbetween her upper chambers in her heart- she was really scared and freaked out-

We will explain it to her when it is time- she will know something is up when we have to go and see a new set of Dr's- but she will take the new Dr in stride- she is so friendly and always has a smile for everyone.

 

[SueM in MN]

Anne -
Prayers and Pixie Dust coming your way.

 

[ohMom]

i came to this board to put on a quick post and saw this thread, now i'm blinking back tears and my stomach is full of a huge knot. you ALL are amazing

my youngest DD was diagnosed with systemic onset juvenile rheumatoid arthritis (JRA) in February 2002, during her kindergarten year. She started with a non-symptomatic rash for 4-5 months; then began with fevers every night like clockwork and major fatigue. Within 6 weeks we saw a ped rheumy and she was diagnosed as a classic case. JRA is a immunological disorder where her immune system mistakenly thinks she has an infection and attacks. Since there is no infection her immune systems is actually attacking normal healthy tissue, in the joints. This results in redness and heat, swelling and pain of the affected joint. With her immune system working overtime to attack this nonexistent infection - - she battles fatige in a big way. Her JRA is systemic meaning it involves her entire system putting her heart, liver, lungs, spleen, etc all at risk of inflammation. We are fortunate to live 40 mins from a ped. rheumy and the children's hospital is great. Living with JRA involves keeping her life low stress, laid back and flexible depending on how she feels for this day, one day at a time. She tires easily and we have to take preventative measures on her behalf; in a very discreet way so she can maintain a feeling of 'normalcy'. I totally understand the invisible disability and how heart goes out to each and every one of you who deal with the uneducated opinions of others.

Paige is doing well now, recovery from a big flare last April, it can take a very long time to reach a good level of health after a flare up. it is a very slow process. she has been on major steroids and just began a tapering to get off them again. Her daily dose is considered low-dose; but she has been on IV infusions to counter her syptoms.

any JRA questions - feel free to ask -- i'm eager to educate as well as I understand it all!!

 

[winniedapooh]

OK taking a deep breath here because while I post here off and on. I have a hard time resonating that a WC or ECV in WDW would make my family's life a lot easier. Here is the reason I have chosen not to:

DSister had a botched back surgery and many subsequent botched experimental surgeries to alleviate the pain, they had cut the wrong nerve-she was paralyzed on one side and still had the pain. Fast forward several years-car accidents, not her fault, caused more damage as well as TMJ. Because of the off and on surgeries and them dropping her while transferring her twice, she is big but not even what I would refer to as POOH sized like me, she has ended up losing more and more of her body through atrophy etc. Her arms don't work right any longer due to muscle and nerve damage done by special crutches so she ended up in a wheelchair. She had pneumonia this past Feb. and now has a trach. Her lungs have hardened from the scarring and they are saying she may never get rid of the trach. She is basically dead from the lower chest down and is in the process of finally getting and electric chair. Short version of a very long tale.

On to me. I have had long time knee problems;born this way and injuries. I have had 12+ surgeries and looking at 2 more in the near future. I have no cartilage left and you can feel the bone on bone grind and feel the junk in there etc. etc. 40 is too young for knee replacements but that is what ultimately will help. Due to the knees the hips are going and I have very loose joints that pop in and out, painful yeah. I have broken toes, major bruises on my body, and just recently cracked my ankle due to my knees giving out on me. I try so hard not to compare myself and think others have it so much worse but I see DS, who is dying-that is a true statement-before my eyes and it is hard to even think of using a chair or ECV for a trip.

 

[pwcarlson]

As a parent of a disabled child, I can only say "God Bless all of you!" Raising a challenged child is a job only few of us are choosen to do. I feel both lucky and unlucky to have a special child.

Our daughter was born with Usher's Syndrome. It involves hearing, balance and vision. Some are born blind and then lose their hearing, some are born with hearing and seeing but gradually loose both. My DD was born deaf and is losing her vision from retintis pigmentois. It is a resessive genetic disorder. Both parents have to be carriers of this gene.

Our dd was not diagnosed as deaf until age of 8 months. We started signing to her at 6 months and by the age of 2 she could sign her ABC's backwards and forwards. The balance part of the equation was hard for her to cope with at the younger ages. She has no sense of balance. Usher's affects the inner ear so the balance system is no good. All her balance is done visually. On the good hand, she can't get motion sick. Mission space is a walk in the park for her. Sometimes I am jealous. Due to her balance she sat indepepndently at 12 months, walked at 2 years, and toliet trained herself at 4 years.

Life has not been the same after the diagnoses of the RP portion of the syndrome. Her vision is fairly stable. She just got her drivers license at the age of 20. Does have some issue of seeing in the dark but not bad. Hopefully will have most of her vision for 20 more years.

Good luck to all!!!!!

 

[mommie2angels]

WOW! I just caught up on the post to this thread. God bless each one of you! I want to respond to so many put know I will leave some out. I do want to say congratulations on those that are seizure free. WOW! That's awesome! Our dd#1 seizures are controlled. Our dd#2 was seizure free for about a year while taking chemotherapy for her cancer so I do know what a wonderful feeling that is. She is back to having 2-6 a day. She had strep throat two weeks ago and her seizures were very mild then. When she got better they were back in full force.

Sue, I can completely related to the testing. Even if we ask dd#2 to do something for us she looks to see who else is watching. She wants to know if it's because it's something we really want/need her to do or if we are proving to someone else she can do it. And forget a teacher or therapist asking her to do something. Too funny!

goofyandmore, the essential fatty acids sound very interesting. I am going to talk with the girls neurologist at their appt tomorrow and also read up on it. Thanks for mentioning that!

Ann, your dd will be in my thoughts and prayers. Lots of pixie dust coming your way! Have you heard anymore about her wish?

I know there is more that I wanted to comment or ask about. I will have to look back and see what it was. Thanks again for this post!

 

[JinniLynn33]

I have twin boys that are almost 12. One of the boys was hit by a van when he was 4 1/2 which caused a c6-c7 transection of the spinalcord and multiple head injuries. After the accident of course everyone thought he was going to die except me. I was the one that called 911 and his brother saw it happen. I am so glad I didn't know that when you bleed from your ear like that it is normallay fatal. So I am advised 1 week later that if he does survive he will not be able to function on his own (ie talk, eat, swallow, breathe) and his spinal is completely cut. Ok..........he is on a ventilator with a trake tube in and wakes up about 3 weeks later. As I am trying to remember all of this I dont, remember the time line we were so disoriented with shock. He was in the hospital for 6 months during which time he pulled his own trake tube out. Talking and eating some things on his own but it was difficult and irritation as he had an NG down his his nose in to his stomach for nutrition.

Anyway to make a long story shorter he has 24 Dr's now. We have had so many surgeries I really have lost count. Spinal meningitus (the PICU Dr adv me at that time a "normal" child would have a 10% chance of recovery from, ha he beat that too!), Most recently the surgery putting rods in his back to correct a 60 degree scholiosis which is apperntly inevitable for spinalcord injuries as the muscles supportting the spine atrophy and turn in on themselves (this one turned into 3 surgeries as the wound site split back open at the bottom and then became infected so we had a wound pump installed), he has 2 sheets of meds he gets every day including his breathing treatments as he is very prone to pneumonia (1# cause of death in quadroplegics).

HERE IS THE GOOD NEWS!!!!!!!

My son is alive and well today. He is in the correct grade level at school with his assistant. He is funny and very articulate...and really fast now that I finally let him have a power chair ( I wanted him to be as independent as possible) he is really enjoying that independence.

We are now looking forward to his wish trip in December to WDW our first family trip and the boys first time on an airplane!!! SOOOOOOOOOOOO excited!

ok I am finally done, lol

Virginia

 

[txaggie94gigem]

I have also been touched by everyone's personal challenges that they must live with day to day.

We have 4 children. My DS (10) has severe allergy induced asthma..I am thinking I will have to buy a battery powered nebulizer because I have no idea what plants at WDW could set him off...he also has severe eczema which is sometimes difficult to control...my DS (7) also has asthma although his is not as bad as his brother...my DD (4) had brain surgery last summer for a subarachnoid cyst (benign tumor) and has been diagnosed with cerebral palsy. She has left-sided weakness and has trouble with fine and gross motor skills. She falls down alot and cannot walk for very long without getting very tired (and very cranky). At PT, they have her walk on a treadmill to try to increase her endurance...when she started she could only walk for about 5 min before tripping and falling down but now she can walk almost 10 min (she still mainly walks on her toes though ). We will be bringing our stroller for her since I know she cannot walk for long distances at WDW. I am not sure how she will react to rides at WDW...her doctors tell us she has a disorder that prevents her from knowing where her body is in space and sudden movements can scare her so we will have to ease into rides I'm sure...Since her weakness is progressively getting worse and she is beginning to lose vision on her left side, her neurosurgeon is beginning to believe that she has some kind of degenerative neuromuscular disease. We start testing later this month...(I'm sure all of you can relate to this problem...we have known about this since June 30 but could not get an appt until Sept. 27-very frustrating to be left in limbo for that long!)...anyway, my daughter also has severe speech delay and talks on a 2 year old level even though she is almost 5. She is in a normal preK program though our public schools and is doing well. We really lucked out...her preschool teacher from last year at a private preschool is her teacher this year so she already knows Karen and can understand her..this is great since Karen gets really frustrated when no one can understand her...we are looking forward to our trip and hope the kids have just as much fun as we do LOL! ALso, like some other of you have said, Karen is REALLY SPOILED (of course being the only Princess in the family is part of it) so we will see how she does with lines and such...that is part of the reason we chose to come in the value season in mid nov....

also, thanks for letting me know that we can take our stroller with us in line. I was kinda hesitant to take ours because I did not want it to get stolen but I know she will be more comfortable in it...

 

[Gillian]

Bumping this up to say wow, you are all so strong! Thanks for the inspiration.

I'm waiting to figure out what is wrong with me, so of course I need to read about all of the worst possibilities. So far the basic bloodwork is normal, but I have 2 MRIs and a nerve test to go. I'm very scared, but I am trying not to think about it too much.

 

[Ali and boyz]

Scotland and............. the telly tonight it rubbish so thought I would add to the thread

I have two sons who are disabled.

my youngest son caught HSP (Henoch Schorlin Purpula) when he was 4 which is a viral based infection which affects all the joints and blood vessels in your body. After 5 months he slowly got better but it left its mark . It had severely damaged the nerves in his ears resulting in him now being severely deaf.

our oldest son was as healthy as you can get until one day in November, 2001 we got a call to say he had had an accident whilst playing rugby. It turned out the scrum (main bodies of the team) had fell on him resulting in them breaking his neck . He was 16 years old and is now a C4 Quadraplegic, his spinal cord was completely severed. He was in hospital for 10 months and ventilated for 4 and needed surgery which took 10 hours to implant steel rods to keep his head upright. He needs meds to make all his bodily funtions operate. Can now no longer breath as before and is constantly plaqued by infections, low blood pressure, dysreflexic attacks and his skin can easily break down. One wee mark can leed to him being bed bound for days on end. He also can't cough resulting in chest infections.

both our boys make us so proud . the youngest gets mad if he doesn't get 100% at school and the oldest is now in second year at university . But it is hard, hard for them and hard for us being carers 24/7. They sad thing I have found about our oldests disablility is the family and friends that disappeared. That makes me angry and sad at the same time

We went to disney last July with family that constantly moaned about everything from the weather, the parks everything and blamed it all on us to the extent that my mum took a stroke. We came back one night to his daughter being rude to my Mum and all 6' 3" of him screaming in our faces. It gets me down a bit to think that the first holiday we had had since this huge life changing situation was ruined by three people

My mum is now left with heart and sight problems but .......... we are going again this year ON OUR OWN. Well on our own as in with our 2 sons and my mum and dad and we can't wait.

I now feel I am a fully qualified spinal nurse and if anybody wants to ask me anything then feel free and / or wants to give ME advice on how to handle people, family etc. (I can deal with my sons accident more than I can deal with them then please do

Ali

 

[MommytoMJM]

We have two disabled people in our home, me and my daughter..
We are the parents of a very special little girl. We adopted her at birth Feb. 6, 2001 (adoption was final 11/16/01). She has many special needs due to in utero exposure to way too much junk. Marjorie (the "baby" she'll always be my baby even tho she is a toddler now) has CNS delays, some dysmorphology and had retarded growth for her first 14 months (until we had a g-tube put in, a fundoplication done [a surgery to wrap part of her tummy around her esophogus] and figured out that she was allergic to corn,the corn allergy is really rough, there is corn in absolutely everything...). She has Fetal Alcohol Spectrum Disorder, Triplegic cerebral palsy (affecting mostly the left side), dyspraxia, Hyposensitive Sensory Integration Disorder, she eats zero food by mouth, talks very little , around the level of a one year old (apraxia) but does do some minimal adaptive American Sign Language, Global Dysphagia, Autism, the beginnings of schizophrenia (she was recnetly put on Risperidal) and Epilepsy
Here is a bit about our little girl and her issues... it is a bit long and talks a lot about medical stuff (fair warning! LOL).

Our daughter was adopted at birth in Feb. 2001. She was born to a birthmother with about 12 different risk factors, among them were alcoholism, prescription and street drug addiction (the scripts were ativan, dilantin and trazadone, particularly bad), advanced maternal age, poor health, chain smoking, homelessness, no prenatal until we entered the picture at the beginning of her third trimester, she was developmentally delayed and borderline gestational diabetes (as if the rest of it wasn't enough! LOL) MJ was a 36 weeker.

We consider ourselves very lucky, although she does have quite a few issues, she is so much better off than we were told to hope for. She is a complete joy to be with and like almost all special needs kids has the greatest spirit even through all of her therapies, hospitalizations, etc. She will most likely never be able to leave home.
I didn't want to try to adopt again after losing Cody....Andrew talked me into it. We both knew we wouldn't put any restrictions on the type of child we would adopt (other than they not be terminally ill) We saw the attorney to talk about adopting on Nov. 16, the birthmother was 6 months pregnant and had just been discovered, we don't know exactly what transpired before they found her....The attorney had been looking for a home for MJ for a while and couldn't find one, he was scheduled to go tell the birthmother on the 17th that he couldn't find a home for her baby and htat she would haveto go into Foster Care....60 families said no to her (boy did they miss out) We found out the day before Thanksgiving that wewere going to be able to adopt her....what a miracle.

I truly can't imagine my life without her, every step is a mile with her, although I have to say it is harder than I ever could have imagined. We had hoped to adopt more kids, but that is looking impossible now....With both of us Disabled and only Andrew to take care of us, life is tough, we have had to give up a lot, I am glad that we didn't have her younger, we couldn't have done it, of that I am confident.

I also am disabled due to Fibromyalgia, severe arthritis, migraines, TMJ and possibly Sjogrens Syndrome. I was diagnosed a year after we got MJ. So it is a double whammy for us. It is a good thing that I had already decided to stay home and parent and homeschool Marjorie, because I would have had to do it anyway. I wasn't disabled when we adopted MJ, actually I became disabled as a result of adopting her.....long story, ask if you are interested...the upshot is, while we inteded to ahve a disabled baby, we didn't inted to have a disabled mommy....

Please feel free to ask any question at all, I am not shy about talking about her, me or our disabilities, especially if it helps people to understand.....