I Am So Mad!!!

Dara

New Member
I am so angry I dont know what to do with myself! This entire situations stinks! I have never in my life felt so helpless! Brian is in pain and numb and there is nothing I can do about it. I cant help take away the pain or anything! MS is so overwhelming and so unpredictable! We have no support or help here. My inlaws are on my **** list for now. Sammy is a total disaster right now. I cant tell the difference between what is being cause by medications and what is stress. He has constant hand clapping and jumping and repetitive noises which are driving me batty! I know that it isnt his fault. I know that he cant control it but after 5 hours of constant clapping, i lost it! It would be so nice if my mother in law or sister in law would say hey, let me watch Sammy for an hour so you can catch your breath. My mother in law does nothing NOTHING at all with him. It would be one thing if she didnt do anything with my niece either but she spend every waking moment with her. She lives 10 minutes away and sees him maybe 2 times a month. This whole thing is crazy! To deal with each thing separately is one thing but to have husband find out he has MS and Sammy, Pervasive Developmental Disorder (PDD) and sub clinical seizures all in one week is a bit much! Sammy seems to have exploded with Autistic traits over night! I am talking to a therapist on April 2nd for me so we will see how that goes. I just need to know that it will get better that life will get better than this. We have literally had 8 years of chaos. I need the chaos to end and that doesnt seem likely!
 

Wiped Out

Well-Known Member
Staff member
Dara,
First off hugs. You sure have more than enough on your plate right now. I'm glad you are going to talk to a therapist. It's one of the best things I've done for myself. I know with everything going on that it probably seems impossible but you need to carve out a bit of time for yourself even if it's just reading a good book or soaking in a hot bubble bath.
 

smallworld

Moderator
Dara, I'll add my hugs to Sharon's.

I know what it's like to feel overwhelmed. Within the span of a few months in 2005, my daughter was diagnosed with Mood Disorder and then my son with Bipolar Disorder (and the following summer my youngest ended up in the hospital with an eating disorder). My husband and I were stunned. We had no idea why it had happened and how we would handle it. You're right -- one diagnosis is enough to deal with, but two or more can send anyone over the edge.

A few things helped me get through this dark period. First, I learned as much as I could about each condition so I could be a partner in my kids' care and do as much on the homefront as possible to help them. Second, I hired a babysitter so I could go out on occasion to replenish myself (college students studying to be nurses or Special Education teachers make good babysitters for difficult children). Third, we don't have family here, but if friends offered to cook a meal or drive one of my kids somewhere, I took them up on the offer (Is that a possibility for you? Or can you ask your mother in law for help?). Fourth, I found support here and on a listserv of parents with BiPolar (BP) children. I think you are very wise to start seeing a therapist next week.

I'm not going to say all is rosy here, but how we live now feels "normal" (if there is such a thing). We have become accustomed to our family of three children with various flavors of mood disorders. We deal with what we have because there really is no other choice.

Hang in there. We're here for you.
 
M

ML

Guest
I'm so sorry. You have your hands full and not much support. I am glad to hear that you are taking care of yourself. I know how trite that sounds, but it is soo true. I'm thinking positive, soothing thoughts of you and your family xo ML
 

Shari

IsItFridayYet?
Oh, my, Dara. What a week. That's a load.

Its funny how you can see the diagnosis coming, you have heavy suspicions what it will be, but it still blows you away when you actually hear the words. I'm so sorry.

Take a deep breath and take one thing at a time. Things will work out. Think back to other times in your life that you felt totally overwhelmed. You survived them, and you'll survive this, too.

SW has good advice, and you're doing the BEST thing to see your own therapist. Good for you. Hang in there, it will get better.
 

jannie

trying to survive....
Hi Dara-
I'm sorry you are going through so much right now. I hear and understand your frustration and stress. You are doing the right thing by getting yourself help. It isnt' fair that you have to deal with so much right now. I know you are frustrated with your mother in law, but perhaps you can try speaking to her. Isn't it her son that is now diagnosed with MS. Maybe she's just afraid because she doesn't know how to help. If possible, I'd try just one more time to ask her for some help. Maybe she could even watch Sammy for an hour. Hold on tight to your friendships here. Sending hugs--Also, I know you're feeling stressed about the medications with Sammy. I know that when difficult child was first taking triletpal he definately got worse before he got better. Each increase in medication make things terrible. I wanted to stop, but knew I had to wait out the first eight weeks.
 

susiestar

Roll With It
Oh, Dara, this really STINKS. We have gone through the bizarre rationing of favor, time, etc with my in-laws.

If you think asking your mother in law point blank to help, she might surprise you. Maybe, just maybe, if you ask her WHY she won't spend time with Sammy and her son, but willspendit with your niece, then she will see what she is doing.

ASK for help now. Call any churches in the area. They OFTEN have people who can babysit, cook meals, chauffeur kids (and you) or jsut help out. You will have to tell them what you want them to do. Laundry? Ask them to help.

Catholic Charities is a group that does a lot here. Even if you are not Catholic, they usually are a great source of support.

Again, this really stinks.. ALL THAT in ONE week is just too much for any person to handle.

sending prayers and hugs,

Susie
 

daralex

Clinging onto my sanity
Dara,
So sorry life just smacked you in the face with a frying pan!!! Take a deep breath and try to find a way to recharge. It's so hard when it all comes flying at you at once! Pick it apart and take each thing at a time, but most of all make sure you are well and can do something for yourself to recharge your batteries. Even the nergizer bunny needs a recharge once in a while! Sending big understanding ((HUGS)) and know you at least have the support of everyone here. You are a warrior that needs a day long bubble bath! Keep strong, keep us updated!
-Dara
 

dirobb

I am a CD addict
dara,
i am am so sorry sometimes we get blindsided all at once. Hopefully you can hang on till your therapist meeting. I find it funny (weird..funny) that we get a diagnosis and all of a sudden our child has every symptom to the 10th degree. I just think it's tunnel vision. Now we are paying more attention and everthing gets magnified. Doesnt make it any easier. Try to steal a few moments for yourself.

As for mother in law.....mine always had my niece over, her daughter only child. Because her daughter needed a break. But me and my four or five had such a great routine that we could handle anything no problem. (My sis mother in law is the same way) So much for being a together individual, with the never let them see you sweat attitude. It got me no help cause I could handle anything. When the kids were younger she would only ask difficult child 14 ss over if she had my niece over (they were close in age and fought like cats in a bag..we had to limit that interaction) so they could play together. I know they questioned why they weren't invited at other times. All the others just weren't invited. To this day she doesn't get it. It was not worth it to me to confront her about it. I had too much going on to have another problem with her and I if we wound up at odds over this. (we had a head butting over her allowing him to use a sippy cup at her house at dinners when he was well past the sippy cup age. Over the top babying..I tried to tread lightly after that)
I hope things calm down a bit for you soon.
 

totoro

Mom? What's a difficult child?
Is there an MS support group at the Hospital? You never know, someone there you might connect with??? ANY Autism support groups in your area, special needs groups, ANYTHING?
Just something. Sometimes if you go once you may find a connection with ONE person, and that person may lead to a possibility? A connection, a helping hand?

My therapist, and Occupational Therapist (OT) tried SO hard to connect us with any one who we might have a connection with another child who was similar or in a situation at all like ours.
We just live in too small of an area...
I honestly know how you feel, I think a lot of us do. I have no family support. My In-laws try. But they are far away, and they think buying things is the answer.
They have a hard time watching the "weird" things K does... But it does get better.

We had the blows come at us all at once it felt like also. So now with both of my children having issues and Me having Bipolar Disorder. I thought that was enough... my husband has a deteriorating spine as well. Some days he can barely get up... but he has to. So we trudge forward... he lives like it isn't there. He will ignore it until he has to get the spinal fusion...
But we had all of this come at us, plus take out a second mortgage so we can keep the business alive, because it helps support a bunch of other people in the family...
Now we get to move.
It does always feel like it is all too much. But you have to know that you will get through this... I am not trying to say "I have it harder", I am amazed at what you are dealing with. But I want you to know that some of us go through hell, and it does get a little better, gets worse, gets better...
We just have to hold on to the good things... the love you have for your family. Remember that Sammy didn't ask for this. Nor did your husband. You are being asked to be a true Warrior Mom right now, I don't know why?
Sometimes we just have to go it alone for awhile. And then a light will shine through... something gives.
Cry when you feel it, let yourself grieve the dream that feel you are losing. Talk to your therapist.
You will have new hopes. You will have new laughter... there will be good days again.
 

Marguerite

Active Member
Hang in there, Dara. Do get some counselling for yourself - it's times like this that I've sought it out and been glad of it.

We went through a rough patch in 1997 when my specialist was trying to get me into hospital for evaluation and 'a rest'. I'd have my bag packed but the hospital bed was never available when promised, so things were very unsettled. Then we had an appointment to get our three younger kids assessed, all at the same time. I wanted them seen together because I felt some of it was familial and some of it wasn't, I wanted the doctors to see how they interacted. And the kids specialist told us that morning that difficult child 3 had autism plus ADHD; difficult child 1 had Asperger's plus ADHD; easy child 2/difficult child 2 had some traits of Asperger's but not enough for a diagnosis but DID also have ADD. We were in shock as we left.

Then before we'd turned the corner of the street my mobile phone rang - a hospital bed was available and why wasn't I in it? husband had to drop me off at the hospital, then go home to get my bag and bring it back. He then rang work to take the several weeks' compassionate leave he'd pre-arranged.

So at a time when we really needed to lean on each other, to get things happening for the kids, we were apart with me stuck in hospital having tests and put through my paces on treadmills etc.

Dara, it was tough. husband immediately organised some counselling for himself (I was getting some, in hospital). Unfortunately, the GP who offered to provide counselling for husband was a total loonie who told husband that I was the problem, which got husband really angry (and was totally unhelpful).

What helped us the most - I got busy. Even from a hospital bed, there was a lot I could do. And I needed to feel in control, at a time when our lives seemed so out of control.

I arranged to have a phone in my room (local calls only). I used it to organise academic assessments for difficult child 1, and to set up family therapy and further assessment for difficult child 3. I couldn't be there so they put me on the speaker phone in the room while husband and the kids were there, with the team from the clinic. It helped husband to know I was involved and putting my brain power in as well, right when he was feeling overwhelmed and alone. And it helped me feel as if I had some use left in me.

My current diagnosis - after 24 years it's STILL vague, but my neurologist treats me as if it's MS. Luckily my eyes are OK. I find ways to do what I can do, to get around problems. With other things, I organise to get them done.

My mother-in-law at the time was still grieving for father in law, who had died not long before. Neither of them had ever been happy with the idea of counselling, so we had to keep that quiet from them. I hated the need for secrecy, also knowing that it was even harder for husband to keep secrets from his parents.

When the diagnosis came, mother in law went into total denial. There was nothing wrong with our kids that a bit of parental control and a good smack wouldn't fix. So we got advice, loads of it. Over and over. I didn't have my own parents to talk to. easy child was also trying to hold us all together, which is a huge burden for a fifteen-year-old. When difficult child 3 got croup while I was in hospital, it was easy child who went in the ambulance with him because husband had to drive the car in, so they could get back home afterwards. With all the denial, the potential for arguments and everything else, husband just kept his mother out of the loop because it was easier that way. This still caused problems because mother in law was very needy (genuine need) and had been used to us visiting her almost every weekend to do odd jobs for her, fix things, spend time with her etc. Suddenly she was being ignored. Not easy at all.

Dara, we managed. It was painful at times but we came out the other side of it all and we've settled into a good routine.

As for mother in law - we finally moved her from her remote town to live literally around the corner from us. I was a bit apprehensive about it but knew it would have to be easier on us than driving for two hours or more every weekend, to do repairs on a house that was falling down anyway.
And since she has moved in nearby, she sees a lot more of us. For a while she would chide difficult child 3 (in front of us) and correct him for behaviour which we'd definitely put in Basket C. We were expected to back her up when he exploded as a result. It wasn't easy, because she didn't want to listen. But with time, and as she began to not feel so tense around us, she saw for herself what we deal with and how we handle it.

Something I've found with my mother in law - when she's anxious, feeling like she might have stepped on my toes, she handles it in a different way. At first she seems to get defiant, almost in anticipation of the chance of me or husband criticising her actions (even if we don't say anything). Then she gets nervous and defensive and in the process can be more offensive also, getting very prickly.

So I use Explosive Child techniques on her - without her knowing. If she wants to talk politics, for example (and our political views are diametrically opposed, yet she seems to want us to agree with her) I just tell her we will have to agree to differ and I change the subject. I just refuse to engage.
She hates counselling, she says that all psychiatrists and psychologists are charlatans, frauds and fakes out to twist every word you say. In her mind, there is no difference between psychiatrists, psychologists and counsellors. Her reasons - back when she worked as a nurse, psychiatry was very different and much more hit-and-miss. So I explained cognitive behaviour therapy to her (without using the name) and she said it sounded very sensible. "Why can't you get easy child 2/difficult child 2 to see someone like that?" she asked me, "Instead of some idiot psychologist."

Slowly mother in law has come around to accept the dxes and in most cases, our management of it. She even keeps newspaper clippings for me, she reads up on it and explains about autism to her friends when they ask. She has come around from being critical of our parenting and our ill-mannered children, to being our biggest champion.

It hasn't been easy. I bite my tongue a lot. I change the subject a lot. But I also have worked at reassuring her and being her friend, which she has needed. The rest - I answer her questions when she asks but it's Basket B with her, I back off and change the subject before she goes into meltdown.

I also had no expectations of her ever changing. By having no expectations, then every bit of change we HAVE seen, is something we really value.

Dara, you need to find your support elsewhere for a while, not from mother in law. Chances are you could ask her to babysit for you and if she did, she could handle your kids in a way you feel makes them worse. It's what in-laws so often do, in their zeal to show us how it SHOULD be done.

In-laws aren't bad people. They raised a person you love very much, so there must be something right about them, somewhere. But a lot of in-laws believe implicitly that they are more experienced at parenting than we are, simply because they are older. What many people forget is that we are NEVER too old to need to learn anything new. We should always learn something new every day and recognise we will n ever know it all. If they approach grandparenting in this way, they will be valuable indeed to their families.

If nothing else, Dara, learn from your mother in law how to NOT grandparent, when your time comes to have grandkids.

In the meantime, get yourselves some counselling - individually, and together. It's you and your family must weather this, and frankly you know better than anyone else what you need. You just might need help in accessing that knowledge and those resources within yourself.

Getting busy doing things to confront the problems - that can reduce your stress more than you might think.

Dump on us when you need to - you have a right to dump.

Marg
 

Marguerite

Active Member
Sorry, one more thing - about Sammy's hand-clapping. I can understand it getting you down. You can try to channel this into something similar but different. Try to figure out what he's getting out of it (is it the feeling of tingling palms? is it the sound? is it the rhythm?) and find another, possibly quieter, way to direct him. Redirecting is better for him and for you, than simply shouting at him (which makes you the obstacle). What about jumping on a trampoline? We had a jogging trampoline for that purpose, it would roll behind a cupboard or door when not in use. It could be used indoors or outdoors.

You may have noticed an increase partly because you're looking for it, but perhaps mostly because you're a lot more distracted than before, so he's far less stimulated than before (and needing to distract/occupy himself).

I know it takes mental effort to do this and this is more difficult when you're feeling overwhelmed, but success even in something as small a this will reduce your stress in other areas, which increases what you can cope with, etc. This is what I meant about getting active and taking control back - it is how you can begin to shed this feeling of helplessness, of lost control. Seize it back. Take joy in every little thing accomplished.

A (female) professor I once worked with said, "If you want a job done well, ask a busy woman."
Right now Dara, you are eminently qualified!

Marg
 

Dara

New Member
thank you all for the support and kind words. Somedays it can be way too much over here! I am still waiting for the neurologist to call. I called and left another message...
As far as my mother in law is concerned, I dont expect anything from her. She really does nothing to help us and makes no effort to be a part of Sammy's life. It just makes me sad that is all and makes life very difficult when there is family here and they are so unhelpful. She is never going to change and I dont expect her to. I have my therapy appointment on the second so that should be something to look forward to. I am just over emotional and tired...I must go, Sammy beckons!
 

BusynMember

Well-Known Member
Hon, if your son has a Pervasive Developmental Disorder (PDD) diagnosis., he should qualify for special education for at least a half a day five days a week. Take advantage of it. That will help HIM and give YOU time to relax. I"m so sorry things are so hard for you now. I've never had family support either, but...do you have any kind friends who would take your son for an hour or so to give you a break? I found my friends to be invaluable! (((Hugs)))
 

SRL

Active Member
Sorry, one more thing - about Sammy's hand-clapping. I can understand it getting you down. You can try to channel this into something similar but different. Try to figure out what he's getting out of it (is it the feeling of tingling palms? is it the sound? is it the rhythm?) and find another, possibly quieter, way to direct him. Marg

There are possibilities here. Sometimes kids with language processing problems will clap or tap out a beat to help them overcome the issue. I ran into (online) a woman with spectrumy traits who went from nonverbal to verbal because she discovered the tapping helped.
 
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