# Do you have a special needs child? Or any children? I want to hear from you!



## greeneyeddolphin

I'm a freelance writer. I am working on some articles relating to special needs children. Although I can think of countless things that I could write about, I want to know what you would like to read about. As a parent of a special needs child, what topics are most important to you? What things are you most likely to go looking for advice, suggestions, opinions, or theories about? Which special needs are you interested in?

Even if you don't have a special needs child, as a parent in general, what topics would you go looking to read about? 

Thanks for anything you'd like to share with me!


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## turnera

I think most parents need to read about what real teenagers and preteens think about and HOW they think. Most parents are woefully ignorant of what these kids are really doing, and are doing the kids a disservice by keeping their heads in the sand.

I'd also like to read about the importance of reading. I'm known as the book lady because the only gifts I ever give kids is books - usually I am the ONLY person who ever gives them books. IMO, that's deplorable. Society has become so utterly dumbed down that I truly fear for us 100 years from now. Who will be building our buildings? Finding our cures? When most kids today spend 90% of their time in front of a tv or a video game and can't be bothered to work hard to achieve something. Then, when they hit college, they quit cos it's too much work. I'm seeing a lot of that now; DD20 is a sophomore and half her friends have given up.

lol, sorry for the soapbox rant.


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## greeneyeddolphin

Don't apologize, turnera. This is great. This is what I wanted. As I said, I'm writing some articles, but there's no point in writing them if I'm writing about stuff that interests me but no one else. I want to make sure that I'm writing stuff that parents, and other people that are involved in children's lives, will not only want to read, but that will actually help them. 

And besides...I actually agree with what you say. I have 2 sons myself, both of whom have ADHD, so getting them to read is a struggle. But they read every day, because I find it to be that important.


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## Deejo

My 8 yr old son is on the Autism spectrum. His diagnosis is PDDNOS with Language Delay.

One of the things that has become glaringly clear to my ex and I, are educational resources. I have been strongly considering trying to build a portal or search engine that will tell people clearly and concisely what resources are available within an X mile radius of them. Nobody yet seems to know how to make all of the information that is out there - easily accessible and useful.

Topics that I would like to read more about are:

What happens when those 1 in 110 kids with autism aren't kids anymore? The flashing red lights are centered on awareness in young kids - but those kids grow up, into adults that will, or may need services over their lifetime. It just doesn't seem like anyone wants to have the discussion about how we handle that as a society. Hell, we've only gotten slightly more comfortable with discussing autism because the numbers have become so utterly glaring in the last decade.

Tolerance. I treat everyone differently as a result of having a child with autism. I am more patient, more accepting. I 'see' what is really going on with someone who others may simply find odd or annoying. I had a co-worker who everyone avoided. He was socially awkward, very literal, monotone, and expressed some repetitive behaviors. People avoided him, or worse, made fun of him - these are adults I'm talking about, not kids. I was asked at one point to acknowledge to a group of others if I thought this guy was weird and a pain in the ass.

I said, "No. I think he's autistic. I think what he gets criticized for is extremely difficult for him. He's not being psycho, he's actually being very brave."

And just with that, some - not everyone's entire attitude about how they chose to view this individual changed.


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## uhaul4mybaggage

I too have a son with PDDNOS and language delay. Though he is making strides, I cannot predict how independently he will be able to live in his future, and that is the greatest worry in my life. It is Exacerbated by the fact that his dad and I are divorcing, and I will very likely be tied to stbxh forever over custody and care issues, more so than for a non-special needs child. I would read with interest about how current adults with ASD are coping and fitting into society--their living arrangements, job prospects, government programs in place to help them, how I can secure his future after I'm gone despite not being wealthy. 
I also have another son, 13, who is hyper sensitive about his younger brother. He is of two minds. First, he is constantly concerned about what others might think or say about his brother (protective and at the same time embarassed, since people don't immediately recognize his brother's ASD and often think he is just misbehaving.) Second, he is frustrated by the parroting and echolalial behaviors and other ASD behaviors that he finds tedious and annoying. And of course, as Little brother develops and approaches "normal" behavior for his age, teasing and sibling rivalry have also increased. Big brother has expressed interest to me in finding a support group for sibs of ASD kids, but so far I have been unable to find one in our area. I would love to read about resources like that for him as well.


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## Deejo

Much like uhaul4mybaggage said - I'm also in the midst of a divorce.

I have heard on several occasions that the divorce rate of parents with special needs children is as high as 80%.

That would make for an interesting, if not sad story. The more upbeat side could be resources or strategies for parents to preserve their marriage.


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## greeneyeddolphin

uhaul and deejo, thank you for sharing your stories with me. I know it has to be painful to discuss such personal stuff with a stranger, and for the purposes that I described. You've given me some excellent ideas for some very useful articles. I hope that both your families survive your divorces without too much damage done to anyone.


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## Sadara

There is loads and loads of information out there about Autism and ADHD. Since my son was diagnosed on the Autism spectrum, I've been all over learning everything I can about it and what I can do to help him.

Just this summer my daughter was diagnosed with Dyslexia and ADHD. There is some information out there on Dyslexia, but not much. Most of the information directs parents to take their kids to a tutor. Well, the tutor here is seriously expensive. I cannot afford to send my daughter to this tutor. So, instead I'm left with learning what I can so I can help my daughter. But, the information on how I, as a parent, can tutor her is limited. There is some information out there, but it really isn't much. I would love to see workbooks and lesson plans I can easily purchase, that don't cost an arm and a leg, that I can use to help my daughter. The biggest problem is that what is out there is very expensive. Tutors that are trained to help kids with Dyslexia are very expensive.

Something I don't read much about is parents that have more than one child with special needs. Both of my kids are special needs and it can be a huge struggle to deal with that. I just don't read much about parents with multiple special needs children.


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## DawnD

Well, I have one that is autistic ( only classified as mild autism at this point) and both of my boys have a language delay and fine motor skill problems. They both require a lot of help outside of school and numerous doctors appts. Time is hard to come by. 

Deejo brought up something wonderful -- the divorce rate being higher in couples with special needs kids. You get so wrapped up in the stress and work of your children, you forget to still make time for yourself. If you do make time for yourself, you feel selfish. Its all over the map. I am lucky in the sense that my son's autism is managed to the point where he attends school all day, while I attend classes. My H and I can meet every now and again for lunch, and we regularly meet at the gym for some together time.

I would definately like to see some coping techniques for parents of special needs childrens, and some to show that even with kids that have special needs, its okay to still make time for yourself. Almost all the parents I know with special needs kids struggle with that.


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## 123

My 10 year old son has severe ADHD. It effects his school work, homework (4-5 hours a night), behavior, social skills, relationships with his two step brothers and home life. (Just got back from his 504 plan meeting) When he was born he had a heart deffect and had to have open heart surgery when he was eight months old. Since then he still has a heart murmur. Because of this we are unable to go the medication route. All the non-stimulant medications I have researched still show increased heart rate during trials. And so far the dietary route has not produced any results. I would love to hear from you what you do for your boys. What has worked, what has not?

As far as articles, I would love to see more written about how to be an advocate for your child. I had to fight long and hard to obtain services for my son through his school. Not sure whether it is normally that difficult, but his school had a really hard time providing services for ADHD.


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## turnera

I had a friend who had a 'problem' kid and the teachers just shuttled him around. Meeting after meeting after meeting. Finally, one time she called his teacher, who was in the teacher's lounge, who as usual blew smoke up her...then hung up. Unfortunately for her, this lady had been taping her phone calls since she'd been having so much trouble, and the teacher didn't put the phone down properly, and the call continued. And the lady was able to tape the teacher LAUGHING about this kid and wondering what else they were going to have to do to get the mother to give up and pull him out of school! So they'd have a better rating, cos he was dragging her grades down! Needless to say, she got a really nice settlement and all kinds of special needs help from the district after that.


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## greeneyeddolphin

turnera, where do you live? Seriously, a friend of mine at my kids school has a story that sounds very similar to that. I have to wonder now if that is a much more common problem than I originally thought. I've always been very lucky that my sons have gotten very understanding and supportive teachers, or maybe it's just that I'm so involved and pushy that they don't have a choice. 

I appreciate all the ideas you guys are throwing out there. Some are things I had thought of, but you bringing them up confirms for me that it is something that parents would be looking to read. 

I do have one more question I'd like you all to answer, if it's something you've dealt with: Obviously certain disabilities are more obvious than others. And some, such as ADHD and autism, sometimes it's not so obvious that they have a disability and people just assume your kid is out of control, a brat, etc. One of the articles I am working on is suggestions for how parents can deal with those kinds of comments and looks. I have a few of my own ways, but I'd like to know how some other parents have dealt with that situation. What do you say, what do you do? What have you said or done that was ineffective, and what has been effective? Where do the comments seem to come from the most - strangers, family, friends, adults, other kids? And do you find different responses work better with different people - a sharp retort working better with strangers, while a gentle explanation works better with kids? 

Ok, so it was more than one question.  Sorry about that.


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## turnera

It was in a sub-city of Houston.

My husband used to be on some boards there at that school district, and it was appalling the way the teachers and administrators viewed students and parents, some of them, anyway. One school - the reason we moved from there - our DD20 was going to, they decided they wanted to be 'the' school for G&T kids; so they literally set out to discredit any kids who didn't fall into that category, make it really hard so they would decide to move to another school. He was in meetings when they discussed doing just that.

DD20's 6th grade AP math teacher wrote a letter to all the parents of students who were NOT classified G&T and told them they should consider dropping them to a 'regular' class for 'regular' kids, as she could guarantee they were going to fail her class. Sure enough, most of them did.


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## uhaul4mybaggage

w.o.w.
I teach 3rd, and my H teaches 8th, both of us in a really good system in VA. I can't even imagine that happening here, thank God. It seriously might be worth your while to move. I have had students come from TX, AZ, even the inner city next door, who were severly lacking in skills, and these were not even sped kids. 

Tips for some of the respondents above:
Teachers get a lot of lesson plans, worksheets, and pointers off the net from sites you can search as well. Google your needs (ex: how do I teach my child to read?) and you will get articles and tips out the wazoo. Readingrockets.com is a site I recommend, and superteacherworksheets.com is free. Seriously, ask and it shall be yours these days. 

For ADD without meds: try interventioncentral.org. Also good for general behavior problems, and academic problems too. Also, having your child sit on a big exercise ball instead of a chair has been shown to calm nervous energy because they have to focus to maintain balance and not fall off. Google that too. It's nuts but it works.

I hope this helps. Hang in there. Take a bubble bath.  And if you get a massage, get one for me too. I could sure as hell use it.


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## BlueEyedBeauty

*Written By:
Cynthriaa*


I am someone who is dealing with "Neurofibromatosis"​And throughtout my whole life- things have been very hard on me. My own family have even disowned me on the day I was born. Just because I am not like other people and noraml. Well, that is fine really; because all it did was cause me to have a life of knowing how rude peple really are in this world and how it is not to have a family who loves you and not even having a friend you were ever able to talk with. All it did was cause me to be better person and someone who would always be here for other people in there own needs and helps that they have ever needed or wanted...​
My folks they would beat me for anything​I would then be beaten for when they were to know the piss out of me. My own father he knew for years what my brother was doing to me and he allowed him to keep on rapping me; it was like he did not care because it was not done to him. I had my first surgery done back when I was six years old. I even knew then I just am not right- that I am not wanted- I am not loved and why, am I the one dealing with this disease. Why, am I the only one in the family who has this evil disease? There are some people who are like myself who do not get it from a family member- also I have the disease on the rarest part- I have both of the Neurofibromatosis (Nfs)​
Let me skip over many of years​When I was 12 years old I found out that when I was to hit the age of 25 years old that these tumors would start to grow even more faster and I would be having even more surgeries done. Which did take place and I also was made to leave my own home when I was 15 years old. My own folks did not even want me at all- from the time I was born they were so happy I found someone who, loved me, wanted to be with me and was older- they kicked me out just like I was a pet unwanted, like I was trash on the floor. Over the years I really started to change even more better than I was. My husband he was always there and is here for me. He has been here for me in many of ways. I have also lived my life thur hell and back. 332 surgeires I have done and my husband he has been there thru 320 of them. He was so close of putting me into the ground more than once. We have also put our twin boys to rest- which only lived for seven mins. I do have a daughter though she is now 14 years old and no she was lucky she does not have this disease and the twins did not either...​
I found out that I only have a few years to live​I will not even be able to watch my own daughter drive her first car, go off to her JR and SR prom, Hold her children, watch her grow old or even grow her first gray hair, I am going to miss out on a lot... But the years with her have been worth it and also worth being with my husband 17 years of marriage and him being with me as friend a year longe then that... He has helped me through so much. We know what it is like to have real true love- and I have been trying to tell others what love really is. A lot of people are on my side, some they have even told me that I am lucky to have shared true love- then again I have two people who think I am just someone out here saying whatever. But once they read this they will know I know what love is... I may not have told you people everything but this is enough to show you- I have had a lot happen to me. My mother has even allowed my sister and brother to have my family lose the home we were in over them takin 32,000 dollars from them and so much more. My mother has always allowed them to do to her- and left me in pain and so much more... Hell, I was even told not to ever back- my sistet though still lives with her 17 years later- she is married and has 8 kids of her own three of them from other men... Okay enough though here is about my disease now​



_*Neurofibromatosis*_​

Neurofibromatosis (NF) has been classified into three distinct types: NF1, NF2 and Schwannomatosis.

Neurofibromatosis 1 (​NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.​
Neurofibromatosis 2 (NF2):​ also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.​

Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients.

The genetics of NF1 and NF2 are outlined below.​Unlike NF1 and NF2, the inheritance patterns of Schwannomatosis are not understood due largely to lack of cases to study. However it is estimated that 85% of cases are in fact sporadic (no previous family history) and 15% are inherited.​For more information and detail on some of the terminology used, please refer to "Genetics: a Primer" at the bottom of the page.

Genetics of NF1 and NF2​NF1 and NF2 are called autosomal dominant genetic disorders. Half of all cases are inherited from a parent who has NF1 or NF2; half of all cases are not inherited but the result of a new or spontaneous mutation (change) in the sperm or egg cell. Each child of a parent with NF1 or NF2 has a 50% chance of inheriting the gene and developing NF1 or NF2. The type of NF inherited by the child is always the same as that of the affected parent (i.e. if the parent has NF1, each child is at 50% risk for NF1. If the parent has NF2, each child has a 50% chance to inherit NF2). However, the severity and the kind of manifestations may differ from person to person within a family.​
When a parent has NF1 or NF2,​ there is a 50% chance with each pregnancy for the child to receive the NF1 or NF2 gene, and a 50% chance for the child to receive two unaffected genes and to be free of NF1 or NF2. The child with NF1 or NF2, as a result of a new mutation, does have the 50-50 chance of passing the NF1 or NF2 gene on to his or her children​.

Unaffected parents who have a child born​with NF1 or NF2 because of a spontaneous mutation do not have a 50-50 risk in future pregnancies. Their chance for another child with NF1 is about the same as that of any couple in the general population, that is, one chance in 7,000.

One additional birth in every 7,000 results in a child who has inherited NF1 from a parent with the disorder. Thus, a total of 2 children in 7,000 or 1 in 3,500 are born with NF1.​


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## 123

uhaul4mybaggage said:


> w.o.w.
> For ADD without meds: try interventioncentral.org. Also good for general behavior problems, and academic problems too. Also, having your child sit on a big exercise ball instead of a chair has been shown to calm nervous energy because they have to focus to maintain balance and not fall off. Google that too. It's nuts but it works.QUOTE]
> 
> uhaul4mybaggage,
> 
> Thank you for the suggestions:smthumbup:. I had never heard of using the exercise ball. I will definitely have to try that, becuase my son has the hardest time sitting still while doing practically everything. Checked out the website.... Looks like a lot of great information. Thank you.


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## heartisbroken

I have worked with individuals with special needs for over 25 years. I once read a book called House Rules by Jodi Picolt (spelling that wrong) and I found it so interesting. It was about a young man who has aspberger's and its all from his point of view. A book that details to others who are unware of how people may act or behave regardless of where they are may give others some insight that the person is not being behavioral -- but truly dealing with his specific disability. I was in a grocery store once and an elderly women was having a difficult time with a middle ages gentleman with Downs Syndrome --- it was obvious that he was just overpowering her. Instead of walking away or standing and staring I introduced my self and gave her my background and asked her if there was anything I could do to help. The manager was on the brink of calling the police and it just was not necessary. She gladly accepted my offer and together we were able to get him outside without any further incident ... she was so grateful. Most of the time people just gather around and watch the show ... without realizing that they could be increasing the stress level in the person.


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## F-102

Hey, TG, long time no see (or, type, idunno...).
While I don't have a special needs child, I do have a daughter who has just turned 11, (or, as I tell the guys at work, 2 more years until I become the biggest a**hole on the planet) and the terrible teens are just around the corner. So I read anything about how to communicate with and raise a daughter, especially from a father's perspective. It's kinda slim pickins out there; there are thousands of books on the mother/daughter relationship, but precious few on father/daughter. But I'll read anything I can get my mitts on.

But some of the school/teacher stories struck a nerve with me. I have ADD, but when I was a kid (late '70s-early '80s), they called it "lazy and irresponsible-do you want to be a ditch digger or pump gas the rest of your life?" (said to me in 4th grade), and one teacher even suggested a "special" class, which in those days, was the nice way of saying: "your kid's a retard and were tired of wasting our time with him".


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## turnera

Oh, F, you just HAVE to go to Daughters.com. I found this site when DD20 was around 11, and it changed our lives. They used to have a mailed newsletter, and DD20 and I would sit down and read it cover to cover. In it, you would find every situation imaginable that she could ever encounter, and what to do.

The whole thing was started by a man, who was concerned about how to deal with his preteen and teen daugthers. It's just chock full of valuable information, readers' advice, just wonderful stuff. 

DD20 and I would read the stuff, and it would give us an 'in' on how to discuss similar issues in HER life. I just can't brag enough about it for men with daughters.


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## F-102

T, I do visit that site frequently. I find it most helpful at times!


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## greeneyeddolphin

Hey, F-102! Yeah, I've been kinda out of the loop for a while. I'm hoping to be around a bit more again, though. 

I appreciate the input. Your idea is actually one I hadn't really thought of, but now that you've put the thought in there, I'm thinking that could be an excellent topic to cover. Possibly several different articles, to really thoroughly cover everything. Thanks so much!


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## lisa3girls

Deejo said:


> Much like uhaul4mybaggage said - I'm also in the midst of a divorce.
> 
> I have heard on several occasions that the divorce rate of parents with special needs children is as high as 80%.
> 
> That would make for an interesting, if not sad story. The more upbeat side could be resources or strategies for parents to preserve their marriage.


I agree with this...my 16 yo dd is special needs, non-verbal learning disorder, and it wreaks absolute havoc on our marriage...she takes 10x more energy than my other two combined to raise.


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