Quest for my normal

[Hotspot]

I'm here. I didn't mean to disappear been having a lot of problems is all.

[Lindamomof7]

Hey Hotspot. Glad you logged in. Ok, I understand... Anything you would like to share? How have your lost time episodes going?

[Lindamomof7]

Ok sort of an update on my medical stuff. Dr called me said I have a rarer form of Lupus.

APS (antiphosphilipid syndrome) or Hughes Disease.

Finally had a chance to read up on it. It is weird to see almost all of my now and previous symptoms listed including miscarraiges, MS symptoms.

But the clincher is the quick onset very severe pulmonary embolisms and pernicious anemia. My pulmonologist is very cautious with me because of the unexplained severity of those clots.

So now it seems I will be on life long coumadin with lots of monitoring. More definitive info next week when I see the hematologist.... More to deal with. ugh and I was feeling sooooo good!!!

[shanrucas]

hi Linda...How interesting, but I was getting the sense you were special. Hang in there, I can't wait to find out if there is anything they can do for you to make your life a bit more comfortable and less stressful..Course just going through it must be stressful.

I sending you thoughts and prayers..and (((hugs)))

Shannon

[shanrucas]

Hotspot...just saw your post..thanks for letting us know you are still around..We are here whenever you are ready to talk.

Shannon

[Lindamomof7]

Thanks Shannon yeah I think the only treatment is life long coumadin and aspirin. But I am doing more reading and psychiatric symptoms are very much associated. So maybe there is something to my distinct mood change in a heart beat. makes sense from an "organic" reason that all the psychiatry feel that is what is going on...

How are you? ((HUGS))

[shanrucas]

back atcha Linda,,keep me posted about your research, I find it interesting, so many sypmtoms that it masks the real cause, I didn't know you even had the MS symptoms, wow talk about your rollercoaster ride.

I seem to be a bit more animated today..mmmm makes me a bit suspicous:rolleyes:, I'm just going to roll with it and hope that I don't hit a bump in the road and go..:eek:

Shannon

[Lindamomof7]

yeah you and me both!!! It's actually scary to feel good. And believe me I am no pessimist so I don't look for depression, it finds me!!!

My pdoc today emailed me and made a joke about being a pessimist, ooh I jumped on him!!! LOL

[Hotspot]

This is going to be long, have some cocoa close by.

Here are some highlights to hopefully explain my not being around much.

First off is work been working a lot in preparation for taking another long needed leave. Counseling still going I don't see any progress there although my wife and him think there is. What's been really taking a lot of my time and energy is having a new kid here.

I think I told you about my wife and I being foster parents. Our home is approved for 2 foster kids at a time. Over the years we have gotten several of the highly troubled labeled problem kids. We have 4 kids altogether and it's been that way a number of years. The day after Thanksgiving my wife got a call asking if we would take in a kid. Again we are only supposed to have 2 foster kids at a time. The caseworker tells my wife a long sad story which she in turn tells me while asking what I think. The boy 13 has spent pretty much his entire life in foster care 18 foster homes 2 residential schools. The kid was on the child psychiatric ward of a hospital and had been there almost 3 months. Caseworker tells my wife the kid is awaiting placement into another residential school but that the hospital will no longer keep him because he doesn't need to be there.

Now having 4 kids already I'm not too sure taking in another would be a good thing for anyone. My wife would take in every kid needing a home if she were allowed. The caseworker tells us he can't be placed in many of the other foster homes for various reasons. Since it will supposedly be a short stay before him being replaced the child limit for our home will be expanded. Tell her we need the weekend to decide. I needed the weekend my wife already knew what she wanted to do.

Monday comes we get a call asking our decision. We agree to take him in. I always make it a point to be home to greet all the kids coming. I take the day off work. He gets dropped off a few hours later. Almost all the kids we have taken in over the years have serious problems. Behavior problems, enormous anxiety issues from being abused and undoubtedly a difficult adjusting time since most get schlepped from one place to another. Normally though there is a slight honeymoon period before all of the problems surface.

This kid was in the house less than an hour before cursing my wife and I out. Nothing new here been there done that with several in the past. Nothing really shocks us anymore. For a kid that had just been in a hospital though he stunk. Most don't test the limits all this early but this kid is different. We make him aware of what will and won't be tolerated. Have to choose the things well but cursing me or my wife out is so, not going to happen. He knows he is only staying a little while and tells us pretty much how he doesn't have to listen or do anything we say because we are only going to kick him out anyway. Again been here done this before with the let's see how much I can push you away before you can me kind of thing.

The kid needs a shower BADLY. My wife after giving him the grand tour asks if he would like to shower. Not only does he smell but his clothing looks disgusting. He goes from being a fresh foul mouthed angry 13yr old to an anxiety ridden red faced pile of tears. The caseworker briefly mentioned his history of having been abused. She neglected to tell us just how bad. Other kids we have gotten were afraid of baths and showering. We have had a number of kids that needed my wife or I to stand outside the bathroom every shower time for a few weeks of them being with us. Eventually they learn they are safe here and no one hurts anyone here or allows them to be hurt.

My wife attempts to calm him down and find out why he is now a pile of tears. For some odd reason at that point he would answer her questions but not directly to her but rather looking at me. He goes on about how she just wants him to shower so, she can hurt him. We do our best to assure him again about how no one gets hurt here. If he didn't literally stink probably would have left the showering until later.

Gave him several options like my wife and I will go downstairs. He keeps crying and blurts out he doesn't want her here but can I stay. I agree telling him sure I'll stand out here until he is all done. After all he is 13 and more than capable of showering without help. He doesn't believe I won't leave as soon as he is in. My wife being there was upsetting him so, it was agreed she would go downstairs and I would sit in the bathroom until he was done. Normally would not do this for a number of reasons but this kid needed a shower.

Most come to us abused very few have the scars detailing it like this kid. He required several more assurances that my wife wasn't going to come in and hurt him and that I wasn't going to leave. Turned on the water for him and I sat on the counter facing away to give him some privacy. As much as possible considering the size of the room. He is still so, upset though he is having trouble getting his stuff off. Tells me he can't do this and needs to get out of here. I asked if he wants me to step out until he is in the shower. I shouldn't have offered that because it only made him more upset. Finally I asked if he wanted help. Seemed weird asking a kid his age but anything to move this all along at this point I was willing to do.

I was not prepared for what was coming at all. Told him to put his arms up like superman and off came his disgusting holey massively stained tshirt. His entire and I mean entire torso is covered with scars. Many look like healed cuts others are clearly cigarette and cigar burns. I'm doing my best to not show any issue with the extremely upsetting discoveries. He then gets back to helping and off come the rest of the clothes. With the exception of his head and neck he is covered with scars. His entire back, legs and something isn't right with his genital area. Thankfully he is in the shower now as I sit there trying to not cry. I am not a crier and although for other reasons over the last year or more I've felt at times like I would I didn't. This though was like the capper. Every few seconds he either asks if I'm still there or pushes his head around the curtain checking.

He is not the size of a typical 13 year old which works out because we have clothes that would fit him. He gets out drys up which is even worse because now that he isn't filthy everything on him shows much worse. He gets dried and dressed. We head back downstairs. My wife had made soup and sandwiches for lunch. While waiting for lunch he starts playing with one of the dogs I go to another room to tell my wife briefly what I discovered. This kid has not only been tortured probably most of his life but lacks basic table manners. He is 13 years old and seems confused by silverware.

I am upset and pissed off that this caseworker neglected to give us the real picture with this kid. The last several weeks have been real hard with him. He gets along well with the animals and other kids. He is either extremely angry with or petrified of my wife which of course breaks her heart. He has been rejected by 4 other residential schools without even a meeting. The caseworker is now asking if we might consider keeping him more permanently. He still won't shower alone, hardly sleeps when he does he has nightmares with blood curdling screaming. He gets along with my father but is frightened of my mother just like he is with my wife. He thinks there won't be enough food so, he has hoarded. He has bathroom accidents because he believes if he uses the restroom he will get into trouble or someone will come and hurt him. If I don't ask if he needs to go and stay with him he won't go alone. The issues are endless.

My wife and I feel horrible for this kid. We both would like him to stay. We aren't sure if we are really capable of taking on his level of needs along with our other 4 kids. My wife normally has the most interaction with the kids since he is petrified of almost all females not sure how this would work out. He is scheduled to begin school on Monday.

[Lindamomof7]

wow Hotspot my heart goes out to both you and your wife and of course the rest of your family.

I can really see how you are torn by all of this. This is who you and your wife are, very compassionate, giving people. I guess my thoughts are what exactly does this do to you and you trying to get some of your own help.

Is this a good diversion for you to help this boy or does it leave you feeling more overwhelmed of taking care of him since you will be his immediate care taker.

I guess you have alot of soul searching to do Hotspot. I just hope you make the right decision about his permanent placement that is best for you.

It is appaling to know that these children live in this world of abuse and torchure and just thinking about it overwhelms me so I can truely understand the difficult decision you and your wife and also your other children will have to make because this impacts everyones lives....

My heart and compassion goes out to both of you.... (((HUGS)))

[shanrucas]

Hotspot..I just don't know what to say except that I am overwhelmed just thinking about it.. what you and Mrs. Hotspot do is so remarkable and passionate, and despatrately needed. This child has been moved around way to much, and his trust issues must be enormous. I can't even imagine what it could be like to be this child.

I agree with you that the caseworker should of prepared you better, at least about the scars and his obvious fear of women. Of course I agree with Linda on this..do some deep soul searching about keeping this child and what it would mean for the rest of the family. Having worked in the field dealing with victims of all ages I know how important it is to have wonderful foster families, I have seen some that wern't so good and wouldn't be able to handle this situation. I think you guys are incredible to take on the hard cases, most don't sign up on that...we have had some that say "we will only take babies" etc.

I will keep you and Mrs. Hotspot in my thoughts and my heart. ((( hugs))) from me too.....and give (((hugs))) to Mrs. Hotspot from me.

Shannon

[Hotspot]

Thanks Linda and Shannon. I knew you both would understand.

My wife and I are doing our best with this new addition. Unfortunately the State and county workers are idiots. He hasn't been in school since last March yet they want him to start attending immediately. It was only a couple of weeks ago that they were claiming him unable to remain out in the community. Since the residential schools rejected him now they suddenly think him remaining in a foster home attending public school is the right plan. It isn't a plan created for his possible success it's rather a setup for disaster.

In a week all the kids will have Holiday break. My wife suggested that the next few weeks he remain out of school to try and gain a better rapport and handle on some of his issues. Then in January when all the kids return to school he could also. It makes sense usually to try and get the kids in a schedule which of course includes attending school as soon as possible. This kid needs help and not piling up more stressors for him to adjust to. The case worker doesn't agree. He is supposed to start in a special ed class even within that setup I think it is an all too soon definite recipe for disaster.

Even though he had come directly from the children's psychiatric ward with a supposed clean physical bill of health neither my wife or I had any trust in it. After all they discharged him completely filthy. The county has a specific clinic for the indigent to take the foster kids to. We found out several years ago it was a disgusting warehouse like place. We were able to get our pediatrician to accept all our foster children free of charge. She scheduled an appointment with the pediatrician that all our boys see. The pediatrician is female however, of course which raises serious problems with our new kid. Her partner is male and decided he would help out.

Friday I took him to the doctor and he did fairly well. He is significantly underweight an short for his age. His genital area which I was concerned about is due to being burned with hot water and further traumas of some nature. The doctor wonders if he is really 13. Considering it all though he is physically well just a body of massive scarring.

He was supposed to start counseling at the same center the other 2 boys go to. My wife called ahead to inquire which counselor he would be seeing male female. She was told it would be a male considering his problems with females. Once we got there though things had changed or perhaps never were. A female came out with the sensitivity of a alligator. He flipped out never making it out of the waiting room.

I had been telling my counselor all about our new kid as has my wife. He normally doesn't see anyone under 16 or with state insurance was willing to meet him if we wanted. I figured it couldn't make matters worse. He was willing to go as long as I agreed to not leave the room. He has gone 3 times which appears to be working out. My counselor thinks of course he is highly traumatized but doesn't appear to have any significant psychological disorders. Anger, abandonment, trust, trauma issues certainly. He thinks it is important for him to be seen 3 possibly 4 times a week to start with. He doesn't think his attending school on Monday is where he belongs. He attempted to contact the caseworker 3 times none of his calls were returned.

Overall my wife and I are still concerned about the long term plans. My counselor seems to feel him being with us is not only good for the boy also for me. The caseworker is extremely unhelpful her supervisor isn't any better. They never seem to forget our number when they want us to take in a kid. Once placed getting calls returned and further assistance is almost nonexistent. He is considered special needs like one of our other boys which makes the monthly stipend slightly higher. The caseworker left that tid bit on our answering machine. This isn't about money we certainly aren't getting rich. We put out more money than we will ever get in. The clothing allowances are pitiful for growing kids.

It is holiday time and of course he needs presents like all the other kids. My wife went shopping for him today. We don't know what he is really into. Not sure he does either.

Tomorrow my wife an I will have a session with him and the counselor. Trying to get a better relationship going between him and my wife. I can't be around all the time an him hiding in the closet or under a bed for hours isn't healthy. The other kids are having a positive influence on him since they adore my wife. He really likes the animals. Found him telling one of our dogs a story while laying on him petting away.

My counselor thinks our taking in this boy is the emotional release I needed hmm

[Lindamomof7]

Hi Hotspot. I am so glad everyone is recognizing this new "diversion" for you might be good for both of you

I forgot to mention to you on last reply about him starting school. I thought the same thing about why they are starting him at school so soon considering his tremendous issues right now.

And does he have a male teacher? or Male aide? or male bus driver? Probably not...

Maybe he needs a different school altogether? DEFINATELY not a public school!!!!

Check out the possibilities...

Believe me I understand I have a high functioning autistic son who is in a self contained class in public school and is having problems since Sept with his new bus driver. And we are in the process of looking at new schools for him since he will be graduating 8th grade and we want a different more specialized school for him for high school rather then our local high school.

So I do know the difficulties Hot spot. And you and your wife are doing wonderful

And it seems animal therapy is working wonders for him and that is a positive sign.

I wish you all luck on your new journey hotspot. It is people like you and your wife that can give so much and hopefully make a difference in someone's life. You are truely blessed (((HUGS)))

[shanrucas]

Hi Hotspot,

Whether or not you take this boy in on a long term basis, he is soooo lucky to be placed with you two. You truly have his best interests in mind, unlike the caseworker. Its easy for the state to make decisions on what should be done and when, they don't have to live with the consequences.

I immediately thought as Linda did, that he shouldn't be forced into a public school situation, it would be disasterous. He needs time to decompress.

I am so happy to hear that you are handling this ok, I hope it continues, but still don't forget to take care of yourself and the same for Mrs. Hotspot. The two of you sound like wonderful parents.

Hang in there, we are your cheering section as well as your support team.

[Lindamomof7]

Hey Shannon how are you?? How is the weather? did you get a storm? A friend of mine out your way is snowed in, not sure exactly where she is though...

Hey Hotspot I think our virtual trip will wait till you get back on track. You need all the support you can get, so we are here

I'm doing ok just been doing alot of research on Lupus and Hughes Syndrome or APS. I see the hematologist tomorrow I guess I will have more answers... not sure though about the internal bleeding but my GI DR isn't until mid January... So I guess I keep bleeding till then....

My husband and therapist thought it would be better to wait about giving me my keys back. I am soooo angry. It is getting old and I am tired of playing nicely. Don't know maybe my therpaist is purposely doing this to see how I handle this trigger or frustration...

Tests, I HATE TESTS!!!! Actually it's the authority behind it that I hate. Hmmm that should be an interesting topic for those of us with control and manipulation issues LOL No wonder I never got along with teachers or professors from HS and college... Hmmmmmmmmm more pieces to the baffling personality puzzle...

[shanrucas]

Hi Linda,

Here on the coast we are just getting lots of wind, rain some yesterday, but today just the high winds,,,pretty normal for here I guess.

I am hanging in there, Mom is doing ok, that is she is more comfortable that she was..I actually have been able to get what I call real sleep. Im just longing for those days of freedom.

You must be exhausted with all this Lupus and APS stuff, and more tests..boy, thats gotta be hard. Hang in there and keep trying to play nice with the docs..they may come up with something that will help so you can get your car keys back..in the meantime ((((((many hugs))))).

Shannon

"I'm learning to fly but ain't got wings, coming down is the hardest thing". -Tom Petty

[Lindamomof7]

Thanks Shannon. haha yeah I'm trying to play nice:rolleyes:

I got pissed at my daughter and wanted to go for a walk, well I had 2 kids try and keep me because they know when I go for a walk, I don't always come home or I end up at the local Inn. So they were in for real surprise because they don't know how strong I am !!!

So I wrangled my 17 yr old son and twisted him into pretzel and said, see don't try to keep me down. We had fun at it but I know it is hard for all of us...

[shanrucas]

LOL...I thing the yougsters are always surprised about just how physcally strong us old ladies really are..Did you eat a slice of pizza for me?

Shannon

[Lindamomof7]

yes and it was sicilian!!! yummmmmmmm......

[Lindamomof7]

Oh what a real nice DR, the hematologist... He and my primary Dr already talked about me and he was so supportive and understanding of all I have gone through. Basically all of my issues for the past 20 yrs he said are explained and he said he can help me. Do you know how many specialists i have gone to and they are just as puzzled with me after I see them?

Not him he was very positive that he will get to the bottom of this. I have Lupus , Hughes syndrome at least and he is looking deeper for something more he said and it explains especially my severe mood (polarity) swings from happy to suicidal in 2 seconds flat. Oh that is such a relief... And he said he is not surprised I cant tolerate medicines. I also have pernicious anemia as well, another autoimmunity disorder...

I see him in 2 weeks for blood test results. he took over 10 viles!!!

Overwhelmed but relieved... ahhhhhhhh

[Hotspot]

Good to hear you've found a Doc Linda that is willing to get to the bottom of it all. I'm hoping everything works out.

As for my new kid unfortunately looking into other school options for him isn't within what my wife or I can do. The county has to make those decisions. Basically have to wait for him to not succeed before anything gets taken care of. It's disgusting but how it all works. Not being a biological parent gives us limited if any say in his educational setting. At least for your son's sake you and your husband can do what is best and most needed.

The caseworker never returned any calls from my wife or the counselor. We were supposed to be sent copy of his birth certificate among other items. The school has him preliminarily enrolled without all the documents needed he can't attend. This works in our favor for once and he is not going to school yet. We aren't going to call the caseworker again either to see what happens.

He needs to continue with intensive therapy, given the time to bond and adjust. Our mini family session went alright. My counselor seems to get along well with kids even though he doesn't usually work with them. He has given many helpful suggestions. Thankfully the other kids love spending time with their grandparents. My parents enjoy having them around and keeping them for sleepovers. One of the suggestions is that we let the other kids stay with my parents for several days while my wife and I devote our time to our new kid. Work on the showering, sleeping, restroom issues along with reinforcing his safety being with my wife.

I had to laugh because counselor is like try to show your wife more affection in front of the boy. He has formed a fairly strong trusting relationship with me, like the kids influencing his being OK around my wife so, would my being more affectionate. I find this funny because my wife and I are already quite affectionate she loves kisses, hugs holding hands. Short of us making love on the dinning room table while they eat I don't think we could be more affectionate.

Found out today the kid can barely read and write. I'm not talking about being a little behind either. He doesn't know how to spell or write his own name correctly. We took him out to eat for dinner. Usually the kids like reading the kids menu with all the animal names for the different meals. He couldn't read it.

We are also trying to set-up his room to be more comfortable because we aren't to allow him to hide under the beds or in the closets anymore. His safe zone which the counselor discussed with him will be his room. For the time being he can stay in there as long as he wants provided he isn't hiding under or in anything.

[shanrucas]

Linda, I am so excited for you, Im sorry about the diagnoses at the same time but wow, 20 years of agony and now you are finding answers. Man I bet you are so drained after 20 viles.

Hotspot, I think its wonderful how your counselor is taking on the children, especially the boy. I am also pleased to here that you are still going to him.

I am not surprised at all that this boy doesn't know how to read or wright, after being shipped around the majority of his life. I am still pissed about the caseworker situation, although not surprised about it at the same time, we have had simuliar situations here in my county as well, one case a child lost her life due to lack of proper supervision.

Keep up the good work:).

[shanrucas]

oops Linda, I mean 10 viles....ugh...I just can't type good these last few days.

Shannon

[Lindamomof7]

Hey Hotspot, Glad you are moving forward with getting him settled.

You know its funny you mention about the showing love and affection to your wife. My husband and I are pretty much the same BUT I see that Peter my autistic son, what he sees me do to my husband, he wants to do to him. So we have to be very careful what he sees.

I understand the not being able to act appropriately with social stuff but wow this could really turn into something more becuase he doesnt know how to be appropriate. I just hope and pray he never catches us in the bedroom!!!

I am glad you are sticking with this boy, and you are able to give him a safe, stable home but I too would feel really hurt because of the manipulation the caseworker has shown. Her goal is to place him but, come on........

As far as school, well the decision not to place him in public school seemed to be right in line with what I said. He may be of a certain age but if he is so delayed and behind, it would really cause him more difficulties right now just to be in an appropriate class setting even if it is self contained.

I would really look into home schooling right now. I think that might be best for him given the circumstances.

Well everyone, hang in there, it si tough around the holidays so keep strong...

[Hotspot]

Special needs or not kids are highly impressionable. Not surprised your son attempts to act out what he sees between you and your husband. Peter being special needs makes it much harder of course. Their appropriate boundary radar is a bit stuck.

P.S Keep that bedroom door locked :eek:

I would really like to see this new kid's birth certificate. Neither my wife, myself, the pediatrician or the counselor think he is 13. We have gotten malnourished, below average growth kids before something with him just doesn't sit right. He doesn't know what year he was born. He thinks his birthday might be in May but isn't sure. He told us sometimes he was told May other times July or October. He hasn't ever had a birthday party which we believe. When was there time for birthday parties between the constant moving and being tortured. He is bright and catches on quickly. He also has a substantial vocabulary when he isn't spewing profanity. His math skills are much better than his reading or writing. My wife thinks he might be dyslexic.

I was helping him practice writing his name and the alphabet. I asked if anyone had ever shown him how. He told me why would anyone no body really calls me by it. I was thinking he had a nickname asking what did they call him. A slew of every abusive name a person could be referred to as poured out of him. He sadly had it rather set.

My counselor did get a message left on his machine from the caseworker today. When he returned the call she was not at her desk. She did leave on his machine how she hopes he knows he will not be covered for his services. He never mentioned coverage to her. He was calling to talk about the kid, his educational plans.... Everything is about money with these fucking workers. Not once did she ask how he was doing or make a comment about his recommendation to hold off on attending school.

It is very sad how these caseworkers place kids like they were boxes requiring storage. It isn't a easy job I do think they should put a hell of a lot more care into it. Lot's of kids get lost in the system meant to protect them others die. I couldn't tell you both how many times we have gotten calls asking about so and so that has not lived with us in years. A caseworker is supposed to come by minimally once a month for the first 90 days then every 6-8 weeks after that. We don't even get phone calls. When the kids get into trouble at school or the school wants to have a meeting to discuss learning issues it can take weeks to months before it happens.

I like to think my wife and I are one of the better foster homes around. We know many do nothing more than provide a roof and food. Since we often get kids from other foster homes we sadly know they are also abused further, treated like second class citizens if even little people. There are other good foster families but the county makes it so, hard to adequately care for the kids families opt out of taking in more.

I remember one kid that stayed with us for 3 years. We got a call the day before his 18th birthday telling us the following day we should ask him to leave. He was considered aged out of the system therefore if we continued to care for him we wouldn't be compensated. They didn't care where he would go, there wasn't any plan made for him. We didn't ask him to leave but it shows how much these kids are actually cared about by the system meant to help and protect them.