In need of prayers and moral support

[peglem]

Sorry to dump on you all, but really have no where else to go- My plate is over flowing and most of it is not very appetizing!

 

Allie will be 18 in a month and I'm having to file for guardianship. I've known for quite awhile that she would not be maturing into an independent adult. But having to put down in black and white just how dysfunctional she is...w/o balancing it with how wonderful she is, doesn't feel very good. And the process is rather daunting.

 

Her pediatrician will not be able to keep her as a patient once she turns 18, as his practice made a policy. He has been THE goto guy for us medically. Never gave up and laid his own neck on the line to advocate for her to specialists. Where will I ever find the right doctor to treat her now? He's irreplaceable.

 

And, Allie aside, after 9 months of couple's therapy, I'm realizing that there really isn't a marriage here to save (and maybe there never was). So, I've got to formulate some kind of exit strategy that will enable me to keep taking care of Allie.

 

I know I'll get through all of this. Life just seems so tough right now and I cannot get any support from my husband. Its just not in him.

 

So, anyway, I'd appreciate any prayers or "atta girl"s you can send my way.

[MomtoJake]

I will be praying for you. You are a strong person and a strong mom- your daughter is very lucky to have you. Sometimes change is so hard and daunting, but has the possibility to bring good, unexpected things too.

 

See an experienced lawyer about the guardianship especially if you see divorce looming. Better to have the guardianship uncontested now if things get contentious in the future- sorry I don't know anything about your situation, but from experience with a dear friend, judges sometimes make horrible decisions when 2 divorced parents are fighting over guardianship.

 

We are pulling for you!!

[beeskneesmommy]

Oh, what a full plate it is! You are at a big turning point in life and it sounds very, very hard. Having a sick child can wreak havoc on a marriage, I know. We never anticipate these hardships when we start out, fresh and young. I wish you all good things and continued strength to get thru it all. Remember that you have made it this far and gained much wisdom and experience at handling life's difficulties. You will get thru it and life will morph into a different, but manageable and finally, a good life. I will be thinking of you, Kath

[SSS]

Sending you good thoughts and prayers-------

Hang in there, you will get through---

[melanie]

Hi peg. We just completed guardianship and his special needs trusts. What a drain on us. I filed for ssd and who knows. Nj is slow. I know how you feel. I really do. Get through 1 thing at a time If you need any advice on the trusts or the guardianship info pm me I'll try and help. I had someone help me and it made me feel better.

[MomWithOCDSon]

Peg -- You've been a strong, wise voice on this forum since my first day tuning in, and I always know that when you have something to say, it will be worth reading. You are such a super mom and advocate for Allie, and while I know no woman can be an island, you certainly show strength that matches a few and surpasses many. I'm thinking of you during this rough time, knowing that you will walk through yet this latest fire and come out the other side tested and stronger still.

[Mayzoo]

I have known you for several years and across two or three web boards. I know you have helped a lot of people and have been a great resource/support for many.

 

Guardianship sounds like rough paperwork. Try to look at this clinically and remove all emotion from the procedure. Your goal is not to allow the reader to get to know the whole Allie, you are only letting them understand the reasons why she is unable to independently care for herself. In doing this, you are doing what is both necessary and in Allie's best interest. This has nothing to do with how wonderful Allie is as a person or how much you love her, it has to with the logistics of her care only.

 

If her doc made the policy, it is her doc who can make an exception to the policy if he so wishes. Some pedis see folks until they are 21. He was an MD first then got his specialty, so there is no real reason he cannot continue to see her if he wishes. Otherwise, see if you can get a phone conference or web conference with you, him and a new doc he recommends in an effort to get the new doc on board with Allie's basic care (after new doc gets and reviews her records).

 

If you think there is any thing I can do to help ie just listen, web research, etc... feel free to let me know.

[peglem]

Thank you all so much. It really means alot to me that you care.

 

I don't think he'll try for custody, he doesn't have the slightest idea how to care for Allie and its pretty obvious he doesn't want to deal with her at all, except to get pity from people for how difficult it is for him.

 

I'll get the guardianship out of the way before I deal with the marriage issue. My BIL is a lawyer and is helping with the guardianship for free.

 

I quit my teaching job 7 years ago to take care of Allie. My license has lapsed, but I think I want to do something else anyway. Hub lost his job in March (he did something really stupid and selfish that is somehow my fault) and is not seriously looking for work. So, its kinda scary putting myself out there in the working world again. I'll do what it takes to make things work- I always have.

 

Her doctor is a member of a large pediatric practice. The "no over 17" policy was made by the group. I'm sure he will consult with whoever the new doc ends up being. Maybe I can get referrals from the local autism groups.

[Missmom]

Regarding her care, I know you really put all of your faith and trust in her pedi. who has been with you every step of the way, but maybe this is just the change you need right now. This may be your opportunity to have a different perspective on the entire situation. After reading some of your posts since I have joined this board, I can tell you definitely know more than most medical professionals out there. Maybe you should ask around for references on a great new doctor, who is willing to listen to you, and consult with your pedi. and maybe you can uncover stones that maybe you have not thought of yet..... It may take you "interviewing" several doctors out there and doing a lot of "teaching" them about pandas, etc.... But it sounds like you are up for the task. Also, in the end you are educating these doctors and hopefully spreading more awareness for many other children and parents who have no clue why these children are changing overnight. Together you all will be able to make this transition, although change is always very scary.

 

As for your personal situation, you are strong and caring and you deserve to be happy. Just take one step at a time, one day at a time and you will get through all of this. Allie needs you more than anything and just keep yourself strong so you can be there for her. It will all work out for the best. My thoughts and prayers are with you. You have helped a lot of people out here in cyber-world through all of your posts and advice, and for that good work I know you will be rewarded in the end. God bless you.

[thenmama]

Peg,

 

I'll offer the most practical thing I can... Someone has already suggested separating the paperwork part of the guardianship from emotion. I agree with that and would add: think of it as entirely separate from Allie in your mind if you have to. Don't think of it as writing about Allie. Think of it as writing a list of clinical symptoms and issues. And recognize that even that incomplete, decontextualized information will have to be further depersonalized and translated into the language of the people you must submit it to: administrative/clinical jargon. Remember that their job is not to see the beauty and individuality of your child. Their job is to interpret forms, toss around the jargon and follow a set of procedures. So just give them the right answers and efficiency they desire, do what you need to do for you and Allie, and just don't let yourself care about anything beyond the info requested/required for this. Your feelings about your child, who sees what in her certainly have their own place-- just not this place.

 

On all else-- I am so sorry you're facing so much at once. Know that you are not alone and that you have a small army of us here who've got your back and will always be there for support and friendship when you need it.

 

Thinking of you.

[dut]

You're in my thoughts....hoping for the best for you and your daughter.

[JAG10]

Peg, you are deserving of a one way ticket to heaven in my book.

 

I have no specific words of wisdom, but a two-prong strategy I utilize during times of crisis. Prong one is specific, systematic planning of what will be done next (which it sounds like you are doing.). Prong two is a method of distraction and periodic escape from the relentless emotional drainage of prong one. If you are a reader, fiction (not related to research). I just finished Gone Girl which was a captivating escape. Perhaps you have different hobbies, but you need to schedule time to give your brain a rest from your full plate. There is no shortage of hysterical movies that deal with women moving on beyond relationships. It's okay to laugh and give yourself a break from the seriousness of it all. Remember what we are told in airplanes.... You must first secure your own mask before assisting others.

 

Prayers said for many opening windows to follow these closing doors.

Edited September 3, 2012 by JAG10

[Kayanne]

(((hugs))) prayers and best wishes

[Dedee]

I don't think I have any major advice that hasn't already been given. I just wanted you to know how sorry I am for everything you are going through. I can't imagine how difficult this must be or even how you are getting through. You are so strong and you should be so proud of yourself. Even if you feel like you are falling apart, just the fact that you can get up every morning is more than many could manage in the face of such a challenge. Please be kind to yourself. Remind yourself everyday how wonderful and deserving you are. There is a reason you were chosen to be this special child's Mother. I am praying for your daughter and for you.

 

God Bless - Dedee

[colleendonny]

You are in my thoughts and prayers. Good luck with everything. You have given me some great advice as well since our journey.