SO UPSET!!

iVillage Member
Registered: 03-26-2003
SO UPSET!!
13
Fri, 09-26-2003 - 7:28am
I'm really upset tonight! While I was out shopping tonight my MIL called and started asking questions about my ds. She was more or less telling my husband that we are blowing everything out of proportion and that there is nothing wrong with him. WHEN WILL THEY EVER GET IT!!!!! I guess she was saying things like, that it can't be from her side of the family it must be from mine and that we don't know how to parent and so on and so on..... I have enough trials and tribulations without having to deal with this too! Why can't they just be quiet? Whenever we go to gettogethers I avoid all questions about him because I know what I'm going to have to listen to. If they ask me how he is doing I just say. "Fine" What kills me is that if he was born with a heart defect or arthritis or an eye problem or something physical we wouldn't be going through this. Why is it when someone has something wrong with their mental fitness people act like that! They think that we think that he is stupid. It has nothing to do with being stupid it has to do with his ability to interact socially. They won't even listen to what I have to say or even try to understand. I am not going to stop doing what is right for my son just because of them. I know what I am doing is the best thing for him. There are plenty of times I second guess myself. And plenty of times that I just want to forget the doctors appointments and referalls and everything that goes along with a special needs person. But for my son's sake I cannot!!! I'm so sorry this is so long but I had to get this off my chest. Thanks for listening.

_________________

Susan

There are 4 things you cannot recover.
1. The Stone.......after the throw.
2. The Word........after it's said.
3. The Occasion......after it's loss.
4. The Time.........after it's gone.

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iVillage Member
Registered: 07-11-2003
In reply to: joeysmom3
Fri, 09-26-2003 - 7:52am

((((HUGS))))


iVillage Member
Registered: 03-28-2003
In reply to: joeysmom3
Fri, 09-26-2003 - 8:30am
Ditto what Candes said!

I also know, from when I was a counselor who worked with adults with disabilities, this response is so typical. It usually was directed to the one person who was willing to see the forest for the trees. And, it was usually because they knew that one family member was right.

It doesn't make it any easier to be right.

Again, I am soooo sorry!

Sio

iVillage Member
Registered: 06-25-2003
In reply to: joeysmom3
Fri, 09-26-2003 - 9:44am
Susan,

They are in denial, and I can't really fault them, because I spent a lot of time there myself. It's hard to say how to break them out of it. A good shock or two worked for me, but a safe way to shock someone is hard to find!

I know some things which may help. You may have tried some or all of them yourself but here goes:

Let them figure it out for themselves: Now I don't mean they should take your DS out for a day to the Zoo. I am thinking give them copies of all the reports and evaluations, and printouts from websites etc, and let *them* read the documentation and make the connections. Some people won't accept soemthing *told* to them, but they will process it better by reading it and thinking about in in their own time. My DH is exactly this way, and now rather then tell him something I want him to understand, I just e-mail him the URL. Were it not for the Internet, we would have divorced years ago!

If possible involve them more: Drag them along to the support groups, have them spend more time with DS when he is just being himself, try and coax them over to your side.

Note thins: By refusing to discuss the issues with them, you could be compounding them. They call and you say everything is fine, so they are thinkign "what's the problem, then?" Everything is always fine, but she is taking him to all these doctors?"

See my point?

I know at first it will be very frustrating to deal with silly questions and to have your own decisions questioned. But if you can make them see things your way, and you can get them on your side, all of your lives will be so much easier.

Enlist DH's help in this from the get-go BTW.

HTH and good luck

-Paula








-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 05-24-2003
In reply to: joeysmom3
Fri, 09-26-2003 - 10:14am
Susan-

I am RIGHT there with you girl. I am right in the middle of it with my inlaws. And they are 1500 miles away and think they more about this kid than i do!

Just last weekend his mother called and asked how Catie was doing in school, so i told her. She wasn't doing well. They had to restrain her in school for tantrums. Her response? "Maybe that is just what she needed." Like we don't discipline her. And i am sorry, but i don't go for other people laying their hands on my kids. So, once i talked to the therapists more and got more information on why they were restraining and how they were restraining, i finally became more relaxed with it.

She then rebuttled "Well, Dalene called and thinks Catie doesn't have Autism". Well, Dalene is one of Dh's sisters. And she has been IN our home TWICE since Mark and i got married almost 6 years ago. We see her maybe once or twice a year, at family functions. And let me tell you, she knows NOTHING about this kid. She got a new job where she is an aide in a special ed classroom working with Downs Syndrome and Severe Autistics. She had been working there only a few weeks. Now she thinks she is an expert on MY kid who is 1500 miles away.

PULEEZE.

I read the other posts before i replied. I didn't want to give conflicting advice. But Dh and i sat down this week and we wrote my MIL a nice little letter. I will include it in the post if you want to read it. We tried not to make it a personal attack, or to point fingers and be critical. i just tried to get the point across. We are mailing it this weekend. This may be an option for you guys as well. It is long, but it was definately worth it!!!

Letter to MIL:

Sharon,

I thought you would be interested to hear about the new events going on with Caitlin, her school and PDDNOS. I really started thinking about our last conversation we had about Catie and felt some things needed to be a little clearer.

Mark and I sat down and talked about it and we both agreed that for Caitlin's sake, our families all need to be on the same page. What is most important is what Caitlin NEEDS. I have felt over the past 2 years that I have tried to be open with you about my concerns about Caitlin, her needs, things she is and isn't doing... and I have not always felt like the information I have provided has been well-received or believed. I have felt, at times, that things have been minimalized or blown off completely, or sometimes ignored. You have asked us questions, like about having a party for her or putting her in the pool, and we have answered no. What you may have perceived as us being "controlling" is actually us being Caitlin's parents. So we would like to get this straightened out so that we as a family can do what is best for Caitlin. This letter is not meant to put you on the defensive or to make you think we are attacking you. However, we feel like these things need to be discussed.

When Caitlin was sick alot and we were having trouble with her ears, we expressed concern about her hearing and other problems we were having. The most difficult thing I had to deal with was the lack of empathy I recieved from the family. I DID expect that you, a mother of four, would have shown some type of support to me, a mother of one. I thought that you would have been a great source to get information from and to feel support from. But instead, I felt like my concerns and feelings were constantly pushed aside and it almost felt like you didn't believe me or you didn't want to admit there was a problem. Sometimes feeling family support is just as important as treating the child for the problem.

Mark and I have said on many, many occasions that Caitlin does better in smaller enviroments with less chaos. We have purposely avoided big get-togethers because of this. I see now that 2 years later, this has actually come back to bite us in the rear. Because you now see her as "normal". Well, she does seem "normal" to you because WE have removed the triggers that send her into overdrive. We have gone out of our way to put Catie in enviroments where you could benefit from your time with her. In the end, I feel this has only inspired you to believe that I am making these things up or blowing things out of porportion.

When you came up to spend the weekend with us, I REALLY thought you had seen the light. Catie was not exactly easy to get along with on the short trip we made to Antelope Island. I offered to stay behind with her so you could enjoy the rest of your site-seeing. Again, I removed her from what makes her go into overdrive. AND it made your trip easier in the process. When Mark and you headed off to the park with her, I REALLY thought it had opened your eyes and shown Caitlin for who she really was. You came back like you had seen the light. You were out of breath, you said she was full of energy, you even apologized to me that you had ever doubted anything about that child. Yes, she is a handful, isn't she???

But I feel like it hasn't taken very long for you to forget that weekend. I really thought over the 4th of July holiday, you would take 5 minutes to realize WHY I wasn't exactly gung ho about being pregnant again. Yes, I AM happy I am pregnant. Yes, every baby is a blessing. Yes, I have accepted being pregnant again. But you TELLING me to "just get over it" really ticked me off. Why? Because I am TIRED Sharon. We have a child WITH SPECIAL NEEDS. Whether you want to accept that is your choice, but it doesn't take away the fact that she is. And as a woman, as a human, as a mother, I have a right to say "you know, I don't know if i can handle this". Instead of judging me or telling me to just get over it, a little bit of support like "Hey, I am sure you will be fine, but if you need some help, I am always here" might have helped.

We hope you can see things from OUR point of view. When we spoke on the phone, and I said they had to restrain Caitlin, your answer was "Well, maybe that is just what she needed." I felt you didn't think we discipline our child. Our three year-old has better manners than alot of 10 year-olds have. She is respectful to those around her, she is sweet and nice. But Sharon, she has trouble with transitions and tantrums. That doesn't mean she is a brat who needs discipline or restraint. It means she needs patience and guidance and people to work with her. I support her therapists in what they need to do, and after talking with them again, I now understand they only restrain her when safety is a concern.

You then said "Dalene came to me and said she didn't think Catie has Autism." Well, I really thought about that statement. My questions for you and Dalene are the following:

*how much time have you spent with Catie in the last year?

*how many times have you read her a book?

*what is her favorite color?

*how many baths have you given her?

*how much one-on-one time have you spent with Catie in her whole life?

*how many times have you gotten down on the floor and looked into her eyes and played a game with her, or played with her, or sang a song with her?

*how many of Caitlin's therapists and doctor's have you spoken with?

*Besides the information we have provided, what other sources have you used to find out about PDD NOS?

Not too many I bet. Because the truth is Sharon, you guys DON'T know. You aren't HERE. Even when we were in Dallas, you guys WEREN'T THERE. You never went to ONE doctor's appointment, one ER trip, one Early Intervention meeting, one ENT appointment. Nothing. You don't KNOW. All you can see is how she acted for the 2 hours she was at your home, or while you were at ours. I don't feel that 2 hours every few months - now just twice a year- is enough to justify you, Dalene or anyone else making a diagnosis or offering an opinion about what is wrong or NOT wrong with Caitlin.

So, for the last time, let us provide you with information about what is going on with Caitlin. You can either believe us or not. She is your granddaughter. Accepting her for who she really is can only improve your understanding of her. If you want to continue to deny it, that is your choice. But it really would be your loss, because she is a great little girl who just marches to the beat of a different drum. Her brain works in different ways, and what may work for one kid may not work for her. Caitlin is one of those kids. We are not parents who make up excuses for our child, hide behind a diagnosis, or let our child run around like a crazy wild person. We are parents who are interested in understanding how she works, so we can work with her better and get her where she needs to be.

We have included a copy of a printout from a website that explains the symptoms and signs of PDD-NOS. PDDNOS is Pervasive Developemental Disorder (not otherwise specified), a neurobiological disorder at the "mild" end of the autistic spectrum, which affects language and social function, often with accompanying perceptual, cognitive, emotional and behavioral symptoms and sometimes motor problems. Autistic-like behaviors and language patterns are frequently evident. Because these are very serious and chronic disorders, affected children need special education, and often medical and psychological intervention, while their parents need encouragement and information.

I have highlighted the things in blue that either apply to Caitlin now or have in the past. I have also made notes out to the side, and i asked Mark to read it to make sure I didn't miss anything.

Last Thursday, September 18th, Mark and I had a meeting with Caitlin's school therapist provided by the school district. Her words were the following:

"I want you to know that in the last three weeks Caitlin has made wonderful progress within the classroom. But I have to say that the first week of school I was severly alarmed. She has major problems with transitioning and goes into serious tantrums, which is why we have to restrain her, for her own safety. For the whole first week, she treated the other children as if they were furniture and she would never even acknowledge they were there. While the other children would sit or stand in Circle Time, she would be running around in the circle or wanting to seperate herself and do other activities... she has finally graduated to side by side playing, but is still not interacting with the kids in the class."

When I mentioned PDD NOS and Autism, she said "Catie is 95% very much a typical 3 year old. But the other 5 % is a severe disruption in her social behavior... the transitioning, the tantrums, having to call her name multiple times... I can definitely see some signs of autism and just because she isn't 'diagnosed' doesn't mean she doesn't have these troubles and behaviors."

When I asked her about getting her diagnosed, her recommendation was "lets wait... right now she is labeled as DD, developementally delayed. Changing her label will not change the program that she is in now, nothing more would be done for her. Right now, if this stays the way it is, and she improves over the next few years, the label will be dropped and her Special Ed folder will be sealed and closed. IF she does not improve, by the age of 7 they WILL have to diagnose her with something, like PDD, and her curriculum will continue to cater to her needs at that time. But I would recommend giving her some time to adjust in the preschool setting and with the program she is in now."

Mark and I were relieved that someone else finally saw what we have been seeing for months and months. At home at dinner, she will say "Thank you mom, thank you dad, thank you mom, thank you dad, thank you dadmom, thank you dadmom..." She will go on sometimes for 2 or 3 minutes. But she doesn't always do this in front of other people, including her therapists. Her therapist suggested we start video taping her tantrums and her repetetive speech so that the Psychologists can get the whole picture.



Although these behaviors do not run her life, they are there. When she is leaving the house and jumping in pools, we have to set very strict rules and routines. One of those is that she HAS to be in a bathing suit and floaties before she can enter a body of water. Instead of you supporting us on this, you continued to argue about how Catie can go in her panties, she can go in her diaper, she can go in her clothes... No she can't. The thing you don't understand Sharon is that it only takes ONE time, ONE time to bend the rules and it can mean her life. ONE time to let her run off without us and she will go with a stranger to never be seen again. ONE time to let her in a body of water in her clothes. These are significant to any child, but especially to a child with PDD-NOS, autism or developemental delay. Because these children cannot process information for themselves, they do not have the skill to determine when it is ok and when it isn't. You cannot reason with her, and at this time, Catie is not in a position to be able to make decisions on her own.



Our job as parents is to do what is best for Caitlin. Not for Grandma, the cousins or anyone else. If we gave in one time, it would take us weeks, and sometimes months, to undo the damage. We can't afford to relax, sit back and let things slide. We would like for you to understand this isn't about US being controlling. This is about us being parents to our child that WE KNOW is different. We don't think it is fair that when we fly down twice a year all her rules and routines should go out the door because you want pictures or you want this or that. It isn't fair to Catie or us because we have to come back home and start all over.



And like we said, you can either understand and support us, go with our rules and understand WHY we make the choices we do, or you can continue to not believe. It is your choice. But we would hope you would do what is best for Catie, and start supporting us with our decisions and rules when it comes to her. We only want what is best for our child.

We hope you read over the information we have provided you and understand that PDD by itself is the umbrella that Austism, Rhett Syndrome, AD/HD, Asperger's and PDDNOS fall under. Dalene is right, Catie doesn't have Autism exactly. She has the signs and symptoms of PDDNOS, which is in the Autism family. She doesn't flap her hands, rock, stim, or anything like that. But she DOES repeat herself, have trouble with transitions, get over stimulated easily, have tantrums, and DOES have signs of being in the Autism family. PDDNOS basically is when the child shows some signs of Autism, but doesn't necessarily fit into any of the other groups. That is PDDNOS.

We have joined a support board and we have been welcomed with plenty of "yes, that is my kid" letters in return. We feel we fit in better with these parents because they understand exactly what the child needs, and that (contrary to popular belief) "a good spanking" isn't going to fix the problem. They have provided us with alot of suggestions to use with Caitlin that have really worked, giving us alternatives and that is all we can ask for.



Mark and Helen

Avatar for littleroses
iVillage Member
Registered: 03-28-2003
In reply to: joeysmom3
Fri, 09-26-2003 - 11:34am
It was common in ancient medical times (1970s and before) to blame the condition of autism on the child's mother. They even called it 'refrigerator mother syndrome'. Oddly, had that been my child's diagnosis, I would have been utterly baffled. I never let my child cry. She was attended to with much love and patience. I'm the opposite of refrigerator!

The insidious thing about not being blatantly or severely handicapped is prejudice. I have encountered it from my own parents, to schools, and even my neighbors. My MIL is an RN, so I have only luckily got support from her. My daughter doesn't have down's syndrome features. My daughter doesn't have a wheelchair. My daughter has an angelic face which looks amazingly normal. Then she starts walking on her toes in the evenings. Then she gets stuck on a subject. Then there's a 5.5 year old who talks with less skill than a 2 year old. And so much more that makes her so different. But, obviously, I was doing SOMETHING wrong, right?

I understand why you are so upset. I have a neighbor who gives me a hard time because our children are in the same kindergarten class. The short bus comes to pick up my daughter. Every time this neighbor sees me, she has something relatively aggressive to say to me about it. I don't say anything because I am tired of being responsible for the personal growth of others. It's not my job. I am already stretched so thin. Even yesterday, I was walking to check my mail and the neighbor was loading her son up in the minivan and she made a remark to me (again) about the school bus. I tried to be vague and cheery and said "I guess the big yellow bus looks fun." and neighbor replies, "Well, it would be fun for my son, too." Do you think she would say things like this to me if my daughter got on that bus in a wheelchair? Do you think she would be so jealous that bus comes to my door? I would walk my daughter to school 5 miles and back everyday if it meant she didn't get to ride that bus.

It makes me angry, I confess. But, I brush it off. If it eats at these people, I don't really have energy to care about that. I educate the ones who are open-minded. I have to save my strength for my family and myself. I have special meals to cook (gfcf), I have therapies to run her to, I have research and books to read, I have a will to win despite what anyone tells me.

I haven't been much use in my whole life. I'm not good at anything, I am average as they come. But with my daughter, I am going to be an Olympian. We will win... and if the others choose not to keep up, I can't carry them with me. I don't have the time, energy or resources to care about them. There is one person who depends on me to ensure she gets what she needs. She's not ASD because I don't know how to say no to her. I am a seasoned mom so that is BS. She does not have ASD because she is a brat. They don't hand out these diagnosis just because your child has tantrums. It's not a wishy-washy mom disorder. Kids learn to talk and develop normally with or without crappy parents.

Be strong and don't feel like you it's your job to be the personal growth coordinator for everyone...if you don't want to that is.

iVillage Member
Registered: 06-25-2003
In reply to: joeysmom3
Fri, 09-26-2003 - 5:21pm
Helen,

Wow. That was very brave of you and Mark.

How did the ILs take it?

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-26-2003
In reply to: joeysmom3
Fri, 09-26-2003 - 10:05pm
Hi Paula,

Thanks for replying to my post. I just wanted to let you know that my son is 4yrs old and we have been working for 2yrs with him. He has had a worker asigned to him that comes and sees us every two weeks. For more than two years we've known there was something "different" about him. We have from the very start talked to my In-laws about him but they refuse to see things our way or even try to consider that what we are saying is true. They think that the doctor's and social workers have talked us into believeing are son has Asperger's. My FIL actually said one day that it's all a money making scheme for the doctor's and social workers so they can keep their jobs!! I almost fell over when I heard that one! So this is where all my frustration comes in. There is no way they will read anything I give them and they certainly will not go to any seminars with me. That is why about six months ago I just decided I wasn't going to try to get them on our side of the fence anymore. That is why I just say that he is fine whenever they ask me. I don't want my son to be exposed to that kind of talk so I just grin and bear it at Christmas time and special occasions. My MIL has this habit of every time she sees my ds she Hugs him(which he hates!)and says to him, " Nanny doesn't think your dumb. Your such a smart little boy!" OH I just want to smack her!

Anyway, thanks for replying.

Sincerely,

Susan

There are 4 things you cannot recover.
1. The Stone.......after the throw.
2. The Word........after it's said.
3. The Occasion......after it's loss.
4. The Time.........after it's gone.
iVillage Member
Registered: 06-25-2003
In reply to: joeysmom3
Fri, 09-26-2003 - 10:55pm
Susan,

DUMB!!!!

Ooooh. Now I want to smack her too. Where does she live? (-kidding)

Interesting that she claims in one breath that he is not dumb and in the other that he does not follow their side of the family.

No Maam, he doesn't follow it at all. He is SMART.

Forget the touchy-feely stuff I said earlier. Let me unleash my sarcasm on her for just one evening ansd she would never be the same again.

-Paula (the righteously furious)

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 04-05-2003
In reply to: joeysmom3
Fri, 09-26-2003 - 11:29pm
I have the same ignorant in-laws who say the same mean,hurtful, stupid, insensitive things. I dread going to a family event with anyone from my husband's side. I feel your anger because I'm there alot.

Something always puzzles me when people post these in-laws problems. Did you ever notice that it's always the husband's parents and that side of the family who have the most trouble with the diagnosis?

Leenie

iVillage Member
Registered: 07-11-2003
In reply to: joeysmom3
Sat, 09-27-2003 - 8:02am

Well, ya know, for us it's MY family that are the idiots. My ILs are great.

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