Parents of children with disabilities, I need help with a school assignment

[dmslush]

HI, I posted this on another board, but am not getting much of a response to it.. if you can help me I would be ever so thankful!!!

I need to do an assignment for my family caregiving class discussing the issues facing parent's who are their disabled children's primary caregiver. So if you don't care to share with me, could you tell me about issues that you face that most of us don't. Your worries, your joys, etc.. issues that it may have caused with other family members, immediate and extended.


ANY disability is fine. If your child (you as in anyone on this board) is "not the norm" and you (and or your family) have to deal with situations that parents of 'normal' children do not have to face, then I want to hear about it. I want the good, bad, ugly. I want what keeps you going, what makes you mad. I want to know who (as in people or organizations) in your community that you find most helpful, and those that are a waste of time and money in your opinion. I want to know what changes you feel should be made to any aspect of the public, etc.. if you have a story I want to hear it!


Also, it would help a lot if you let me know what kind of disability your child has. ADD, that I understand, but many times there are acronyms used that I don't get like PDD. So, please spell it out for me Also, their age would help me!!!!

If your stories are personal, and you don't want them on the board, you can email me at slusher@charter.net Everything you tell me will be held private.

 

[nativetxn]

Just bumping this up for you.

 

[emmy]

Okay, I'll give this a shot! We have a son who is PDD( pervasive development disorder), he has apraxia and SID( sensory intergration dysfunction). The biggest challenges we faced were in getting him diagnosed properly, we took him to the school for an evaluation shortly before he was 3 . He had very poor speech- so we thought that was the whole issue at the time, when we went they told us he would talk when he wanted to and that if we disciplined him better he would be fine! We have other children and knew this was not true- he definately had something going on in his little world. After a very long, frustrating year fighting with the school district we found a great place called LADDERS( Learning and Developmental Disabilities evaluation and Rehab Services). This is where he was first diagnosed with Apraxia and began getting some services. He still had a lot of trouble seperating from me, he could not make himself understood to others so school was very stressful for him. He had some great teachers and we continued with the evaluations- found out he had not only verbal apraxia, but global apraxia( affecting his whole body), then last summer he was tested for Praxis and SI and was found have extreme difficulties in both areas.
Once he was diagnosed and we learned about it life got much easier for all of us. We now understand why he does what he does and how to help him!
One of the biggest challenges we faced was being judged by others when we were out- he had very loud disruptive tantrums and the range of comments were unbelievable. I actually did my grocery shopping very late at night so I did not have to take him in situations that were so difficult for all of us. Once he was able to communicate better( both with speech and by signing) the tantrums were much less frequent.
He also does not know where his body is in space and can not properly process touch- so even a very friendly or light touch can seem scary or dangerous to him- so another challenge we face is people touching him when we are out. Crowds are very difficult.
He started the Wilbarger Deep Pressure Protocol at the end of December , this is a brushing program to help his nervous system and is administered every 2 hours. Mornings can be very hectic- I have to get all the kids ready for school, do nebulizers for 2 of them and then brush Chase all before 8 am, then I have to go to the school throughout the day to brush him.
He is in a mainstream classroom and doing really well this year(kindergarten).
Having babysitters was not an option- as he was so difficult to handle- so DH and I never got to go out without children.Also learning the laws and getting a good IEP took quite a lot of time and effort.
I think through all of this we have learned to value the little victories! We celebrate if Chase holds a crayon or makes a circle- which would be a given to another 5 year old. We are greatly warmed at seeing him transition into his classroom more easily each day and we have learned to overlook the little nusances in life.
Not sure if I answered all of your questions, let me know if you have any more specific questions I can answer.

 

[binny]

well lets see,

Were going on in Wednesday to get a specific diagnosis but we have been told that it could be anything from auditory response issues to Autism.

My dd ( Karissa, 3 1/2 ) was deaf from the time of birth till she was 18 months old. at 18 months after hearing our doctor poo poo our concerns about her delays in speech and walking we took her to a pediatric ENT ( Ear nose Throat) who diagnosed the problem with one look in her ears.
she scheduled her for ear tubes the next week, we went in and 7 minutes later ( thats how long the procedure took) she was a hearing child.
It was absolutely amazing!!

She was walking 2 days later and running the next day.

The issues we have had since then are trying to get her caught up with her peers. She doesnt takl as much as her perrs ( though she can talk a lot more than she used to ) she doesnt act like a normal 3 year old sometimes either. She CAN count to 10 now and is learning her letters, given all that she has been through she has made a lot of progress!


The resources that have helped us the most were the State program for infant and toddlres. They scheduled home visits from a Physical therapist, and occupational therpist and developmental specialist.
THey made arrangements for her preschool that she is in now when she was about to graduate form the birth to three program too.
we have also receievd A LOT of support from our Church family, one of dd's caregivers at Church has a boy who is deaf and she helps Karissa sign and can communicate with her at a deeper level than most.

The OT also gave her Cranio-Sacral massage which was a huge help to DD!

The people that didnt help were the doctor who refused to listen to us in the first place and one evaluator that came in and said " Shes Autistic, get over it!" That was really had to deal with!

Our worries are that she will never " catch up" which is pretty much unfounded. We have been told she will likely catch up in the next 2 years!
Another concern is that kids can be so mean!! There is one boy in DS's class that I hate to have aorund because he just spurts out whatever thought comes into his head no matter how hateful ( and many of them are) the thought may be. I am afraid that she will be teased a lot. That really bothers me.

My joys are far exceed the worries though
Every step with her ( and Ive shared many of them here) is celebrated ( Hence my signature..) Every new word, every new gesture, things that most people would take in stride- we dont take anything for granted with her!

She is a gentle, loving, wonderful child who wants nothing more in the world than to love on people


Anyway, Im sorry its so long, I hope Ive helped some. please feel free to PM me if I can help you with anything more.

 

[Piglet]

dmslush,

I have a 6 yo DD with a "hidden" disability. I don't have time right now to write, but if you are interested and can wait I will try and send you some information and opinions tomorrow.


Melinda

 

[dmslush]

Thank you all so much! Melinda, I would love for you to send me the info & opinions whenever you get a chance.


Thanks so much!!
Dana

 

[Karel]

I'll share my son's story with you. He's been in special education since he was two. He's learning disabled with moderate fine motor problems and speech problems.

We're luckier than most because I was a special eduction teacher,so when he turned two and couldn't say a word, I knew there was something going on. To make a long story short, we got him tested right away and he went to a preschool handicapped program until he was three. At three, the local school district Child Study Team is responsible for him. He went straight into a development delay program until he was five. He did a year in regular kindergarten but could not keep up. Then he went back to his old school into the self contained classroom setting and has been there ever since. He'll finish elementary there - next year is 6th grade and then he'll go to our regional high school.

It's been rough for him because socially and emotionally he's on grade level. It's the academic stuff that is tough for him, but he's learning, just at a snail's pace. His younger sister now reads a grade level above him, so that's hard for him.

Our town's school, which is two blocks from our house, does not have a class to meet his needs. I know if I pushed hard enough that they would have to make arrangements for him but I don't think that is good for anyone. His brother and sister both go to this school, which is K-6. It's a very small school for a very small town, and I know he gets upset because his town friends go there and he doesn't.

All his school friends live out of our town so he doesn't get much of a chance to see them out of school. They do have dances for the 5 and 6 graders so I'm encourging him to go to them and he can do some after school things at our local school. We work hard at keeping him involved in town sports, scouts, and other activities so he can build friendships with the town kids. The up side is that when he goes to the four town high school, he'll know kids from two towns.

We dont' know what the future holds. Education is not fun for him so I'm not sure if he'll want to go on to college. In a couple of years we'll start talking about the local vocational school. He doesn't have the close friends his brother has but I think that's his personality. He's happy to hang out at home and do his own thing. Most of the time the kids accept him as he is, they know he's a slow thinker, but a lot of the kids his age around here seem to have their share of problems to do. I like to call the group of boys that live around here that are his age the Ritalin crowd because they are all hyper and aggressive. That's the complete opposite of my son. He may not be the brightest crayon in the box, but he knows how to listen, he tries his best, he's helpful and considerate and has a good sense of humor. Those are qualities I want in all three of my kids. So I hope you find something to use in this drabble.

 

[slimplaw]

I have worked in the special education field for 25 years and I can tell you some of the issues families I have known have faced. Respite care is one issue for families. More of it is needed for families to be able to vacation or even leave their home to shop when they have a child with severe disabilities. For our older students who will always need a caregiver, the families must go to court and be designated as their child's guardian. when the student turns 18. All males no matter how severe their disabilities are must register for the draft at 18. Parents of students with severe multiple disabilities look at us in disbelief when we tell them this. You might find some topics addressed by parents of deafblind students on the Texas School for Blind and Visually Impaired(tsbvi.edu). They publish a newsletter titled See/Hear and family members have written articles about life with a deafblind family member.

 

[ToriLammy]

I'm sending you an email about my 16 year old daughter with Cerebral Palsy cause I dont' think she'd appreciate me posting it to the board Watch for it and if you have any questions please feel free to email me back.

Tori

 

[momof2OH]

I will also PM you in the next few days about my 2 kids. Mine might get pretty long so that's why I will PM you.
Briefly: My DS who will be 12 in a week has been diagnosed with ADHD since the age of 4. He is now also diagnosed with BP (BiPolar), OCD (Obsessive Compulsive Disorder), GAD (Generalized Anxiety Disorder), Migraines, Hypothyroidism, and has an Immune Disorder. He also has some LD issues as well as being Dyslexic.
My DD who will be 14 in 2 months is diagnosed ADD and BP. She is also hearing impaired and has some LD issues.

Be on the look out in a few days for that PM.

 

[Claudia1]

One of the best analogies that I can give is that it is like driving a car with a flat tire. You (the caregiver) are constantly tugging on the wheel (life situations) but your car (the disability-driven child) is constantly going in its own direction. If you hit a bump in the road, the car (your child), a crash could cause some serious damage (or delays in progress). Not all situations are like mine, but some are. By constantly trying to train, teach, mold, adapt, and prepare your child for the "real" world, you are going against their natural instincts.

In our case, we are dealing with Central Auditory Processing Disability (CAPD), which causes the brain to incorrectly or incompletely translate what the ear has heard. Additionally, there is ADD (the non-hyper form), expressive and receptive language disorder (comprehension and expressive skills) and a low IQ (close to mildly mentally impaired). Because of an abnormally high social skill level, these disabilities are hidden in most social situations. Only we (her parents), her teachers, and our friends know of the need to keep constant monitoring around her.

In 95% of her teenaged life, she can function "normally". Poor grades (and, therefore, poor self-image/worth) has been the norm all of her life. She falls apart when not in a structured or established situation. As parents, we must try to teach her every nuance and scenario so that she can cope in a crisis.

One of the biggest challenges has been a few teachers along the way. Some have been excellent but others blatantly refused to believe our medical reports and put her at risk. Not only did she develope some undesirable behaviors but she regressed in her academic/life skills.

Participating is team sports is also difficult. Individual events are usually best because you are going against yourself. Remembering plays and thinking fast do not come easy. As they progress thru Middle and High School, the clubs & teams are often beyond their skills.

What drives us (as parents) is the fact that we are the only chance for survival. If we give up, our child will be in jeopardy.

A difficult hurdle for us has been to teach them to "like" the person that they are. They often see themselves as defective or different and that translates into "bad" in their minds. In discussing the disabilities and the coping mechanisms, it is difficult to not appear to be saying, "You are not normal". It is like trying to tell a blind person what the color red looks like. They have no perspective on how vivid the colors can be, only that they must be beautiful. Our children may not udnerstand their own thought processes, let alone understand how they differ from the "norm".

We have high hopes for a "regular" diploma and a fairly independent life. Someone will always need to check on her daily but an understanding husband would be great. She is loving, full of empathy, and a great joy.

I hope this helps. PM me if your need more info.

 

[dmslush]

Tori,

Got your email this morning! Thanks so much!


I want thank all of you that have posted, emailed, or pmed me. These are very personal stories, and I appreciate everyone being willing to open up to me. It is people like you, who are willing to talk about the hard times you have being a family caregiver that will help make changes!!! You all deserve a pat on the back for being so wonderful and strong!


Dana

 

[SueM in MN]

If you are still looking for more, please PM me and I'll write to you about my DD.
My 17yo DD has cerebral palsy and other issues. She is non-verbal, but can understand quite well.
To just write something short - the most unhelpful person was our first pediatrician (we got rid of him) who kept "pooh-poohing" my concerns. I was a Public Health Nurse at the time and a big part of my job was doing well-baby visits, following up on high risk infants and doing developmental tests. He treated me as a "hysterical mother" who was seeing things that were not there. When we got to 18 months and she wasn't walking, he said "some kids don't until they are older." I told him that wouldn't fly with me since I knew that a child that age who was not walking NEEDED a referral on for further eval. Since we were in an HMO, he was our gate-keeper and we couldn't see anyone without him. When he finally referred us to a neurologist and we got a diagnosis, he refused to refer us on for early childhood services because he felt it made no difference whatsoever (he was not that old, but his attitude was back in the dark ages). We've also had good and bad teachers and doctors over the years. The ones that bother me the most are the ones who talk to DD in "baby talk" just because she is able to talk to them. She really hates that, too. She either tunes them out completely, of one time, she signed to me that I should tell a day care worker that he was a "turkey" because he talked to her like a baby. He treated her with a lot more respect after that.

 

[nkjzmom]

Are you concerned with diseases such as diabetes or kidney disease/transplants? One of my brothers had his first kidney transplant at the age of 3....the baby of our family is diabetic. I can collect info from my mom if you'd like......

 

[Disney Doll]

I don't have a child with a disbaility, but we are very close to a family who has a 6 year old son with Down's Syndrome. I can relay some of the things I've obsevred over the last 6 years, since this joyous being was born.

They did not know he was being born with DS. She did not have an amniocentesis done, as in their minds the results wouldn't change anything, so why take the risk? Anyhow, he was born full-term and they knew withinh 24 hours he was a DS child. They had a pediatric cardiologist see him, and he did have 3 different cardiac anomalies, which we were told was not unusual for DS children. These anomalies would require surgery, but none was so serious that the surgery couldn't wait until he was about a year old. They brought him home after the normal amount of time post partum, and they were buzzing along OK. At that point, developmentally he wasn't too different, as all newborns are not exactly balls of fire...they pretty much eat,sleep,and poop! He had poor overall muscle tone though, and a little bit of trouble nursing, again due to the poor uscle tone. They immediately got hooked up with the "Birth to Three" program offered by our state, which was a huge help to the parents. It is a program where they have access to physical and occupatinal therapists, social workers for counseling and guidance to other programs that might be helpful etc. I should probably mention that these folks had a 3 year old non-handicapped daughter as well. The Birth to Three therapists helped the whole family. They didn't just concentrate on the baby.

Anyhow, things were going along OK until he hit about 1 year old, when he started having seizures. I am not sure if that did something to his development, or what, but it seemed like after the seizures started, and they started him on the meds, he really fell off with development. He then became very ill with an unspecified respiratory thing, and became a failure to thrive child, needing nasogastric tube feeding, home oxygen therapy etc. For the next 2 years, he was pretty much in and out of the hospital with this respiratory/failure to thrive thing. The only good thing that happened during this time was that his heart anomalies healed without any surgical intervention. His grandmother insists it's because she went to Lourdes and brought him back some holy water. Quite frankly, even the doctors had no better explanation as to why that may have happened, so the Lourdes holy water cure works for me!! All that matters was that he got better, IMHO.

Come to find out that with most DS kids, the first 3 years are the toughest with regard to physical/medical problems, and for some reason they seem to level off at age 3, which is exactly what happened! I mean, they have to be vigilant about his respiratory status, and they actually do 2 preventative nebulizer treatments on him daily. He eats fine now, is on the growth charts for DS kids, which are different than the growth charts for normal kids, and he goes to school. We are fortunate in our town to have a very good school system, which has an excellent special needs program. He is currently in Kindergarten, mainstreamed for most of his classes, he does gym, goes swimming with the gym class. School has made a huge difference in him insofar as he pushes himself to keep up with the other kids, so he has made huge progress. He rides the bus. There is an aide that is assigned to him. She is on the bus with him, he gets a car seat on the bus, she spends her day assisting him at school as needed, but also encouraging him to be independent, participate etc.

If I had to say the biggest thing his parents worry about is what will happen to him when they are gone? He does have a sister, she is not special needs, and I am sure she will always look out for her brother. However, you can't make that an expectation for her life. I know his parents have gone to all sorts of seminars regarding financial planning for the future of this child, and have already started looking into group home living etc for when he is an adult. After all, he also has the right to live a life as independent as possible. I don't think he'd ever be able to be completely independent, but I do think that with supervision, he could certainly finish high school and hold down a simple job. Everybody needs to be able to be a productive member of society up to their ability to do so.

Hopefully, this is something of what you're looking for. Good luck!