I would like to start a thread for the purpose of getting some input on how other relationships in your family are affected by the stresses of dealing with a special needs child. Also I would like to hear any suggestions you might have for dealing with these stresses so that any negative affects on family relationships are held to a minimum. In my family I can certainly see a lot of conflict that develops as we attempt to deal with the behaviors of my two grandsons. I want to support my ds and dil as much as I can, but some days I just feel that I can't deal with much more. I have kept these boys during the day while their parents work since I retired almost five years ago. In addition, I try to keep them one night each weekend so that their parents can have a little quiet time. The five-year old is in kindergarten now; and while this helps some, the two-year old is becoming increasingly more hyper and difficult to manage. I find that my dh and I become ill-tempered toward each other at times as a direct result of dealing with the two-year old every day. My dh loves both boys very much and helps me a great deal with them but is becoming increasingly resentful of the fact that so much of our time is tied up with them. We often argue about this. He thinks that we should force our ds and dil to make other arrangements for the children's care while I feel that we should continue as we have been until the youngest one is old enough to be placed in an appropriate setting. Our dil says that she is going to try to get him placed in a pre-school setting next fall. The problem with placing him elsewhere now is that there is not an appropriate setting anywhere nearby for a child his age. It is highly doubtful that any daycare facility that accepts children his age could or would manage him. He really needs to be assessed first, which I believe my dil is leaning toward having done soon. That brings up another issue that causes disagreement in the family. Some family members feel that getting him diagnosed is the wrong route to take. They seem to feel that this would just create more problems by getting him "pigeon-holed." There are even family members who feel that both these boys' behavior is the result of not being properly disciplined. Of course, this just points it all back to my dil and me since we are the ones who have been the primary caregivers for them. Even though we know that "poor parenting" isn't the reason for their behavior, we get so tired of these insinuations. I could go on and on with examples regarding how dealing with these children negatively affect relationships in our family, but I am anxious to hear from some of you.

By Feona on Monday, December 1, 2003 - 06:18 am:

I think it is very sweet that you are helping your family.
Alot of moms including me take a break everyday and have the kids in nursery for two hours a day.

I don't know if it would help you to have him in a preschool for a few hours a day to get a break.

I know moms who have their kids in one preschool on monday wednesday and friday and another preschool on tue and thur for 2 hours a day so they can get a break. Now I think of it there is not so much strss on one teacher that way.


We do get help with ds behavior with the special ed shadowing he gets. I think the only thing the school is complaining about now is he won't clean up his toys at school. He is starting to clean them up now.

I think the main stressful thing is you can hardly share with people everything that is going on. They wouldn't be able to take listening to it.

There is stress no matter what you do. If you get the evaluation there is stress, if you don't get the evaluation there is stress. There is no escaping the the stress.

I think the $150 dollar a day the system spent on ds for the last 3 years has been very helpful to him. The way I look at it, they aren't spending that money for no reason.

By Gammiejoan on Monday, December 1, 2003 - 12:12 pm:

Thanks for your comments, Feona. I do feel that a couple hour break each day would help. At least for now he is still taking a good nap every afternoon. Sometimes I feel that is my only salvation. He is napping right now, and I am using the free time to come on line.

By Marcia on Monday, December 1, 2003 - 02:45 pm:

Just wanted to make a quick comment on the diagnosis before even thinking about everything else. I chose to not have my 7 year old identified for schooling. I was already dealing with a witch of a principal for one of my other kids, and didn't want to go through any more. I figured she'd be fine for JK and SK, and although behind, she was ok. She also got unofficial help. Then came grade 1. She was falling farther and farther behind. I had to fight to have her identified, and to get her the help she needed. She's now in grade 2, and has help daily. She couldn't do without it.
Even though a label is a rotten thing in many ways, it can get you the financial and educational services you need. Try to think ahead, because that's when it will be really needed.

By Marcia on Monday, December 1, 2003 - 02:55 pm:

OK, post #2. First of all, I think you're doing an amazing job!! Not many grandparents would devote all of their time to providing care for their grandkids, high needs or not. I can see how this could be very frustrating for both of you.
I have 4 kids with special needs. Our home is a disaster, and that drives my hubby insane. I have 2 kids who use wheelchairs, walkers, standers, special bath and toilet seats, and have cases of diapers/pads/wipes delivered at a time. He can't stand that this stuff is taking up so much space in our home. There's nothing I can do about it.
He also feels that we're very tied down because of those 2 kids. (they are permanent foster kids) I try to explain we're tied down with the other 3, too. It's part of being parents of young kids.
I think this is the best thing we could have done for all of our kids. They're growing up to be kind, compassionate girls, which is very important to me.
All in all, I'd say we've experienced far more good than bad from having all of these kiddos in our life.

By Lauram on Monday, December 1, 2003 - 03:44 pm:

not a lot of time to write now- but I just wanted to say that it causes TONS of stress- in our marriage, our family and I'm not even going to get into the extended family. That's ugly. Kudos to you for your strength and dedication to your gs's.

By Feona on Tuesday, December 2, 2003 - 07:32 am:

My mother call ds slow this weekend. How is he slow if he knows she little letters at three years old? Gets me stressed out that people don't look at the entire individual, but little pieces. I could tear anyone down looking at tiny parts of them.

Of course she insulted everyone thanksgiving so I guess she couldn't miss ds too.

We started ds on Gymnastics last week. He is doing well. He does have trouble following directions like bend you knees, but I think he did better this week over last week. Seems to enjoy it.

I think we are going to continue the karate because it fits into our schedule on Fridays. I don't think the karate is helping him much. He is too young.

The special ed teacher said anything that helped him with body awareness is good.

We did a job matching game last night with ds. He did pretty good match jobs with tools. I was surprised he did so good.

They are doing sequencing at school now.

We are getting ds tested to see if he breathes through his nose this Wednesday. I am not quite sure if he breathes through his nose of not and speech teacher said it was important.

By Gammiejoan on Tuesday, December 2, 2003 - 10:49 am:

Feona, it sounds to me as if you are doing everything you can to advocate for your ds and to get him the services he needs. Believe me I know how aggravating negative comments from other persons, especially family members, can be. Sometimes we just have to let it roll off us like water off a duck's back. Just keep hanging in there for your ds.

By Juli4 on Sunday, December 7, 2003 - 05:54 am:

Feona,

I was wondering how old your ds is? I was in Karate for 10 years growing up since about 6 years old and although I was not special needs I saw many parents with special needs children get a lot of help and see impprovement and behavior. Of course our school was more than just a class it was all week. you could take him everyday if you wanted and the parents who took their children consistently saw iporvement. It depends greatly on the teacher though. The discipline required and expectations that were held sometimes seemed to be too much at times and parents thought that maybee the teacher was too hard on them (not mean), but it really helped in many areas including grades in school. ANyways just my experience.

By Feona on Sunday, December 7, 2003 - 07:00 am:

DS is only three. We are only doing it now because it fits into our schedule nicely and I like to tire him out!

By Mizm on Friday, December 12, 2003 - 12:15 pm:

I think it depends on what problems he is experiencing as to whether he should be placed in a daycare setting. They MUST take him..but that doesn't mean they will WANT to. I found that out with my own special needs daughter a few years ago (she is five now). The centers I spoke to himmed and hawed and basically said "they have to, but don't WANT to". Not an environment I wanted my daughter in.
There is a program in each state..birth to three..that is excellent. They come to your home and provide the therapy he needs. They establish goals and work on problem areas. At three they place them in special education in the school system.
My daughter was diagnosed at birth with problems..and although I feel that it does limit them..it will come up sooner or later in school. The process is painfully long and the kids don't recieve the proper help if you sit on it. Lord knows its hard enough to get them in when there is no doubt to the problems they have. The school isn't terrific when it comes to identifying and fixing anything.
Is your grandson just hyperactive? Is he on time with his milestones? Sometimes the birth to three has stipulations to where they have to be delayed more than 25% in two or more areas.

By Lauram on Friday, December 12, 2003 - 02:11 pm:

Is that true of a PRIVATE daycare or just one that receives government funding. I would think that a private one can do what they want and just claimed they are not "equipted".

By Cat on Friday, December 12, 2003 - 04:48 pm:

Laura, speaking as a family child care provider (private daycare) I cannot discriminate against anyone because of special need or any other reason. That's the law. It doesn't matter if I'm equipped, have training or whatever. I would think parents of special needs children would want their child's care provider to be equipped and trained. It really puts us in a hard spot sometimes. Being that I am a private provider, I can pick and choose my clients (kids). If a parent of a special needs child thinks I don't accept their child because of their needs (feel they're being discriminated against), they could make my life difficult. I personally would never discriminate against anyone, but that doesn't mean they will see it that way. Thankfully I've never been put in that situation. I know someone that was, and she just told the parents that she wasn't taking new kids at the time. Like I said, puts us in between a rock and a hard place. But like Mizm said, I wouldn't want my child somewhere they're not wanted anyway.

By Lauram on Saturday, December 13, 2003 - 10:31 am:

Why can a private school not accept a child who has special needs then? Or is that not true anymore either? (i'm wondering because my child does have special needs...)

By Mizm on Saturday, December 13, 2003 - 09:08 pm:

They MUST not discriminate..private schools also..but they WILL give you a disclaimer.."we CAN accept your child, BUT we CANNOT change the curriculum to suit your child"..which is the same thing as discrimination..(in my eyes) but without it being overtly so.
I think it stinks..I don't want my daughter in any place where she would be considered a burden or a pain..and thats exactly what alot of the schools will give the impression of..."wellll...we have Never had a child like yours...I have never DONE this before.."we are willing to TRY it and see what happens.....If I were YOU, I would find a place more appropriate, OF COURSE we would LOVE to have her (Yeah right), but i don't have an aide in the class...and I am not sure I can handle it, but we can TRY IT".

I called a Church playgroup before..and she flat out told me that it would be SOO much better for ME to find a playgroup for kids like my daughter. Kids like my daughter? As if she is any less a child...
I am considering on homeschooling her. i don't want my daughter in any environment where she would be considered LESS THAN. I just don't think society is willing to accept handicapped children. They are not forgiving..and most times uncompassionate.
I remember I went to a Christmas dinner at my hubbys work. His coworkers GF asked me flat out "WHAT I plan to do with my daughter"? EXCUSE ME?

By Mizm on Saturday, December 13, 2003 - 09:20 pm:

Cat..you are correct..I would definitely want a provider that is trained with dealing with MR children..seizures...behavioral problems. Most people are uncomfortable with it..the child is viewed as undiciplined..or mean and unruly.
The only one who watches my daughter is my mother. She has no training, but she knows what to do if there is an emergency..and she is very forgiving of my daughters tantrums and behavioral issues. If my mother decided she couldn't handle her..I don't know where i would turn. My mother, god love her, is in denial about my baby and her problems. She KNOWS but slips into the denial stage once in a while. Its difficult for her..MR children in her day was a hush hush thing...a family secret..something to be ashamed of and hidden. Her brother was profounded MR and he was put away at 16. I am happy to say, though..that my mom has learned alot..and is my daughters most staunch supporter. My mother claims everyone else is the idiot..NOT her granddaughter! Go Mama!