OT suggests stopping hsing; behavior dilemmas

[Twinmom]

Our DD's OT has recently suggested that we put our three boys back in school in order to concentrate on helping our DD to modify her behavior. She wants us to call in an Applied Behavior Therapist (ABA), put together a detailed behavior plan to get DD under control and slow or stop OT until she is better. I am struggling hard with this...but, I am also pretty much at the end of my rope with DD and her destructive attitude and behavior.

A little back story to this one: I have four adopted kids, three with SPD and one with a genetic disorder. The twins are sensory-seeking and pretty berserk, DD is sensory-avoidant, in most areas. Three of my kids (all the boys) are a sib group and are highly intelligent if not in the gifted category, the other (DD10) is extremely street smart but having major behavioral issues along with her SPD. We began home schooling after a private school claimed DD was low IQ (nope, just had a visual processing disorder!) and we realized that the boys needed an environment to balance their need for advanced academics with their immaturity and sensory issues.

Hsing has been fantastic for the kids, who have such a variety of different needs, but hard on DH and I. There HAVE been lots of family benefits and on most days, it is well worth it. However, DD's behavior is what makes it hard, though the twins certainly contribute to the problem! When she's a mess, no one can do anything but deal with her. I am balancing things okay for the house and kids, but have little to no time to care for myself and DH. DH works at home, though in a detached garage office, but does travel frequently. DD has frequent, intense and increasingly violent meltdowns, some related to sensory issues and others to abandonment issues with her adoption. If she has a sensory overload, she chooses "fight" over "flight" every time. This often becomes her coping mechanism in other areas (like compliance with schoolwork or unwanted chores, etc.). She's on medication for anxiety. I am an LCSW and have some professional training in how to handle all this, but it is very difficult. I am tired, haved gained a bunch of weight, am somewhat depressed (though holding out okay) and am physically struggling with containing DD. We've considering residential placement if she won't make the decision to work harder at controlling herself...my take on things is that she has enough counselors, OTs, docs and strategies to help her and she'll now have to make the decision to deal (or at least try to) rather than expecting me to do it for her. She's having problems both inside and outside the house...not sure she'd survive socially in a school environment or that being the only child in our hs would improve things from a social angle. However, something has to change as her behavior is causing us to have problems in our own social circles and is significantly limiting our lives.

OK, that's probably long enough. I'm heartbroken at the thought of putting them all back in school, heartbroken to hear the OT (all of 24 yrs old but with a strong, experienced supervisor) say that I am not tough enough on DD though I try so hard to be consistent, struggling with the balance between tough love and the more nuturing side of me that I need to use to deal with her anxiety/abandonment issues, and am unsure of how to proceed with the schooling/ABA issue but wanting to choose the best, most consistent course.

Anyone have any ideas? Either way, thanks for "listening" to me vent! Being a mom of four special needs kids isn't a walk in the park!

[Shari]

:grouphug: You sound absolutely overwhelmed. BUT, I don't think I'd stop homeschooling all my children just because a 24yo 'professional' told me to. Maybe you can take a week off, get some sleep, then re-evaluate the situation? I know I have a better perspective after a break. That's not to say you don't have some hard decisions to make, but it's really hard to see clearly when you are emotional and exhausted.

Sorry no advice just ((hugs))

[OneRoomSchoolHouse]

I don't know what to say. You sound like a saint. You have enriched the lives of these precious children that would have otherwise been overlooked. I hope others with the same issues will give you some ideas of how to handle your situation. :grouphug:

[AliR]

I can only try to imagine your situation - I have only one special needs child and even that is unbelievably difficult at times (this morning, unfortunately, being one of them).

However, like a previous poster, I strongly believe that you need somehow to recharge your own energy levels before making such a radical decision about your children. Can you cut back on what you are doing (in all areas of life) for a couple weeks to give yourself some space and time to think? I would also take the time to talk this one through with your DH, and any other family members that you are close to - it should not be all on your shoulders.

Here is just my humble opinion. I can see where the OT is coming from, but without looking at your family as a whole I think her suggestions are a bit wide of the mark. To put the boys in school to focus on DD is not a good message either to the boys or to DD. It is obvious that DD has issues that need addressing, but that should be done within the family group rather than making her the focus of attention. I think that your view that DD has to take some responsibility for her actions is correct.

Take care of yourself, you sound a wonderful person.

[Dobela]

:grouphug:Our DD's OT has recently suggested that we put our three boys back in school in order to concentrate on helping our DD to modify her behavior. She wants us to call in an Applied Behavior Therapist (ABA), put together a detailed behavior plan to get DD under control and slow or stop OT until she is better. I am struggling hard with this...but, I am also pretty much at the end of my rope with DD and her destructive attitude and behavior.

A little back story to this one: I have four adopted kids, three with SPD and one with a genetic disorder. The twins are sensory-seeking and pretty berserk, DD is sensory-avoidant, in most areas. Three of my kids (all the boys) are a sib group and are highly intelligent if not in the gifted category, the other (DD10) is extremely street smart but having major behavioral issues along with her SPD. We began home schooling after a private school claimed DD was low IQ (nope, just had a visual processing disorder!) and we realized that the boys needed an environment to balance their need for advanced academics with their immaturity and sensory issues.

Hsing has been fantastic for the kids, who have such a variety of different needs, but hard on DH and I. There HAVE been lots of family benefits and on most days, it is well worth it. However, DD's behavior is what makes it hard, though the twins certainly contribute to the problem! When she's a mess, no one can do anything but deal with her. I am balancing things okay for the house and kids, but have little to no time to care for myself and DH. DH works at home, though in a detached garage office, but does travel frequently. DD has frequent, intense and increasingly violent meltdowns, some related to sensory issues and others to abandonment issues with her adoption. If she has a sensory overload, she chooses "fight" over "flight" every time. This often becomes her coping mechanism in other areas (like compliance with schoolwork or unwanted chores, etc.). She's on medication for anxiety. I am an LCSW and have some professional training in how to handle all this, but it is very difficult. I am tired, haved gained a bunch of weight, am somewhat depressed (though holding out okay) and am physically struggling with containing DD. We've considering residential placement if she won't make the decision to work harder at controlling herself...my take on things is that she has enough counselors, OTs, docs and strategies to help her and she'll now have to make the decision to deal (or at least try to) rather than expecting me to do it for her. She's having problems both inside and outside the house...not sure she'd survive socially in a school environment or that being the only child in our hs would improve things from a social angle. However, something has to change as her behavior is causing us to have problems in our own social circles and is significantly limiting our lives.

OK, that's probably long enough. I'm heartbroken at the thought of putting them all back in school, heartbroken to hear the OT (all of 24 yrs old but with a strong, experienced supervisor) say that I am not tough enough on DD though I try so hard to be consistent, struggling with the balance between tough love and the more nuturing side of me that I need to use to deal with her anxiety/abandonment issues, and am unsure of how to proceed with the schooling/ABA issue but wanting to choose the best, most consistent course.

Anyone have any ideas? Either way, thanks for "listening" to me vent! Being a mom of four special needs kids isn't a walk in the park!:grouphug: I was a foster parent and we attempted to adopt a child with RAD. It ended up being more than I could handle so I have the utmost respect for you. The child we tried to adopt with RAD was very much like the one you are describing - except younger. Our closest friends have adopted 4 now with various stages of RAD. It is a tough, tough job. I personally was never so tired in my life. As I am sure you know, most kids with RAD love to create chaos among the family. Part of it is to gain attention (or draw attention away from what they want to avoid), part of it however is just to be in control.

What worked for us was to send the most severely effected child to school during the day, for at least part of the day. We arranged for most therapies (like OT, PT) to be given to her at school so she was not in the classroom entirely so her day would be broken up. We worked very closely with the school so she couldn't divide and conquer us that way as well. Did she get a lot at school? Sometimes, sometimes not. She did learn that others have the expectations as dh and I. But the most important part was that I got a much needed break. I was able to focus on the other children in my home and give them some much needed time and education. (I was homeschooling 2 others at the time). Because I got a break, I was much better able to be consistent, not so angry and tired, and could deal with her in such a better way. Honestly, I don't think that had I done the reverse (keep her alone at home) would have made anything any better or different. Actually, I believe it would have pushed me closer to a nervous breakdown. You also need to remember that your family consists of several children and you and your spouse. Not just your dd. While there is give and take in all families, you cannot completely sacrifice the majority of the family for a single person- especially when you know it will be a long term sacrifice. Families have to learn to work together and grow with each other. Your other children need to feel safe. They need structure and consistency as well.

While your current OT may be a great OT, she has not walked in your shoes and is most likely very naieve (sp) about this. I can remember listening to my friends and social worker and thinking the same things the OT is saying to you. Boy was I ever wrong. For a typically developing child with some of these issues, yes, being alone for a time with you would work. I don't believe at all that with the RAD it will work at all. Yes, there are some theories and practices out there where you keep the child literally attachedd or in arm length distances all the time, but that is just so very exhausting. Have you read Nancy Thomas' When Love is Not Enough Parenting Children With RAD? Or the very personal book she wrote called Dandelions On My Pillow, Butcher Knife Beneath ? In the second she shares at the end how caring for RAD children left her extremely depressed and emotionally drained.

For the child we tried to adopt, we did place her in residential care for a short time. For her, it was the shock treatment she needed. For a time anyway. While there the drs were able to see her in action and were also better able to adjust her medications. Risperadol was a wonderful addition to her protocol. Friends of ours have one child that regularlly cycles thru residential care. I know it sounds terrible, but it isn't. For him it is the very controlled space/routine that allows him to focus on pulling himself back together. For another of their children, public school has been a wonderful decision. It forces him to be accountable to peers and to other adults. He is much better when he has the structure of school. They homeschooled another. You already know that what you are doing now is not working. Why not try a new radical approach? Public school for her may be just what you need.

Great support for me was a yahoo group called RAD-FAS kids. They were a wealth of support, information,and hugs. Some homeschool, some don't. Their children range from mildly effected to so damaged that they will always need instutional help. Some homeschool, some don't. But they can all give you the support and advice you so desperately need.


In the meantime, :grouphug:. I will remember your family in my prayers.

[Twinmom]

Now I don't feel so bad about taking most of this week off school! ;) I'd been feeling guilty for doing just field trips and videos this week while I thought it through...now, I can see through your eyes that it was the right call. I have a lot to think through and need the space to do it.

Thanks, and hugs for the support! I'm definitely not a saint, though! Come see me while my child is melting down and you will see my true colors! :glare:

I know it's hard to put yourself in my shoes, but any WWYD's out there?

[Dobela]

I think we were poting at the same time. Here's my WWYD.
:grouphug::grouphug: I was a foster parent and we attempted to adopt a child with RAD. It ended up being more than I could handle so I have the utmost respect for you. The child we tried to adopt with RAD was very much like the one you are describing - except younger. Our closest friends have adopted 4 now with various stages of RAD. It is a tough, tough job. I personally was never so tired in my life. As I am sure you know, most kids with RAD love to create chaos among the family. Part of it is to gain attention (or draw attention away from what they want to avoid), part of it however is just to be in control.

What worked for us was to send the most severely effected child to school during the day, for at least part of the day. We arranged for most therapies (like OT, PT) to be given to her at school so she was not in the classroom entirely so her day would be broken up. We worked very closely with the school so she couldn't divide and conquer us that way as well. Did she get a lot at school? Sometimes, sometimes not. She did learn that others have the expectations as dh and I. But the most important part was that I got a much needed break. I was able to focus on the other children in my home and give them some much needed time and education. (I was homeschooling 2 others at the time). Because I got a break, I was much better able to be consistent, not so angry and tired, and could deal with her in such a better way. Honestly, I don't think that had I done the reverse (keep her alone at home) would have made anything any better or different. Actually, I believe it would have pushed me closer to a nervous breakdown. You also need to remember that your family consists of several children and you and your spouse. Not just your dd. While there is give and take in all families, you cannot completely sacrifice the majority of the family for a single person- especially when you know it will be a long term sacrifice. Families have to learn to work together and grow with each other. Your other children need to feel safe. They need structure and consistency as well.

While your current OT may be a great OT, she has not walked in your shoes and is most likely very naieve (sp) about this. I can remember listening to my friends and social worker and thinking the same things the OT is saying to you. Boy was I ever wrong. For a typically developing child with some of these issues, yes, being alone for a time with you would work. I don't believe at all that with the RAD it will work at all. Yes, there are some theories and practices out there where you keep the child literally attachedd or in arm length distances all the time, but that is just so very exhausting. Have you read Nancy Thomas' When Love is Not Enough Parenting Children With RAD? Or the very personal book she wrote called Dandelions On My Pillow, Butcher Knife Beneath ? In the second she shares at the end how caring for RAD children left her extremely depressed and emotionally drained.

For the child we tried to adopt, we did place her in residential care for a short time. For her, it was the shock treatment she needed. For a time anyway. While there the drs were able to see her in action and were also better able to adjust her medications. Risperadol was a wonderful addition to her protocol. Friends of ours have one child that regularlly cycles thru residential care. I know it sounds terrible, but it isn't. For him it is the very controlled space/routine that allows him to focus on pulling himself back together. For another of their children, public school has been a wonderful decision. It forces him to be accountable to peers and to other adults. He is much better when he has the structure of school. They homeschooled another. You already know that what you are doing now is not working. Why not try a new radical approach? Public school for her may be just what you need.

Great support for me was a yahoo group called RAD-FAS kids. They were a wealth of support, information,and hugs. Some homeschool, some don't. Their children range from mildly effected to so damaged that they will always need instutional help. Some homeschool, some don't. But they can all give you the support and advice you so desperately need.


In the meantime, :grouphug:. I will remember your family in my prayers.

[Twinmom]

Dobela, thanks for the detailed post! We were posting at the same time! You have lots of great information...I'm thinking it through but running out the door to OT. Will post on it later, thanks!

One note: she does not have RAD but is on the spectrum of attachment issues. I am thankful that she's not all the way there...I'd be in the nut house, literally. Despite that, the RAD stuff is SO helpful in how to deal with her and I always appreciate the similarities and ideas. Just wanted to point out that we've specifically been told she doesn't have RAD...

[Ottakee]

Well, I only have 3 adopted kids with special needs and I am tired. I don't know if I could handle 4.

This year we DID put 14dd into school. She is honestly not learning a lot academically but goes 9-noon and gets her OT, PT, and speech therapy. She is also REALLY enjoying school. That gives me a break to focus more on school with 12dd. Older dd has bipolar, a mental impairment, etc. She is not overly hard to have at home but school gives us all a break.

With some of what you mention, I wonder about fetal alcohol and/or a mood disorder. Both are very very common in adopted kids----esp. as bio moms self medicate with alcohol to cover an untreated mental illness. IF medication is indicated, it can make a HUGE difference for all involved.

Can you get any respite services? We can get about $800/year for each special needs child to pay for a babysitter/respite provider. This allows me some down time, time to go horseback riding, out with dh, etc. This is a huge help.

Hope this helps. It is really hard communicating these things over a forum.

[HeidiD]

You also need to remember that your family consists of several children and you and your spouse. Not just your dd. While there is give and take in all families, you cannot completely sacrifice the majority of the family for a single person- especially when you know it will be a long term sacrifice. Families have to learn to work together and grow with each other. Your other children need to feel safe. They need structure and consistency as well.




This is so true.

We have one adopted child and she is on the autism spectrum. Her behaviors were EXTREME in her younger years (she destroyed everthing she could get her hands on, peeled all the paint off the walls, screamed round the clock, injured herself and tried to injure the other kids, physically attacked me, etc.). Life was a nightmare as we went from doctor to doctor trying to get help for her. Our family was under terrible stress. What we ended up doing was sending her to school and continuing to homeschool the others. This gave us a chance to regroup and give the other kids some peaceful time away from her antics. The following year, we had finally found a doctor who was able to treat her successfully with medication, and we were able to resume homeschooling her.

I've noticed that some professionals from whom we've sought help have tended to zero in on an "ideal" approach that they have in mind without considering the practicality or the logistics or the affordability of their recommendation, or the effect it will have on the operation of the family as a whole. This is understandable from their point of view, but something to keep in mind when considering their advice. If the advice given is likely to cause more problems or strain than you're already dealing with, it's probably best to disregard it. It's important to consider the big picture when making decisions of this sort, something which the OT isn't equipped to do for your family. Best wishes. :)

[melmichigan]

I have to agree with much of the advice you have gotten on the board. I would also consider your school district or county for services for your DD. I have two of my children bused for the morning to receive services from the school district. They are all then home by lunch time, but even that little bit of time makes an enourmous difference. :grouphug:

[Twinmom]

The OT is actually suggesting putting the boys in school and keeping DD home...the flip of which would be easier for me, but it is true that the boys would survive better in school than DD would. DD is intelligent enough to go to a regular classroom but probably wouldn't survive socially/emotionally unless we put her in a special ed classroom...and that brings additional problems. Not sure there is any good solution to this problem, but I'm going to keep looking for one.

As for respite, unfortunately DD was a private adoption (as were the boys) and we have no recourse for funding through the state. We are on our own. So far, everything we've done has had to be paid for privately. Now, with the potential of two more boys in OT, DD's meds (for an anxiety disorder) and counseling, the possible addition of ABA and DS's genetic disorder (not covered by insurance, will pay 100K in medical/dental bills by the time he's 18...no that's NOT a typo! :glare:), we're tapped out.

[Twinmom]

What worked for us was to send the most severely effected child to school during the day, for at least part of the day.

You also need to remember that your family consists of several children and you and your spouse. Not just your dd. While there is give and take in all families, you cannot completely sacrifice the majority of the family for a single person- especially when you know it will be a long term sacrifice. Families have to learn to work together and grow with each other. Your other children need to feel safe. They need structure and consistency as well.

You are completely spot on right in both of these areas. Regardless of my concerns, I think that we may need to look into what the school system can offer her, at least to explore it as an option. I really do need a break from her and she does need to see that others expect the same behavior that I expect. My boys need my attention as well...they have needs that are not completely being addressed. I am tired. We need some sort of respite but can't seem to get it.

On another note, our OT got a real education from DD today! Within 10 minutes of starting our appt., DD began the meltdown to end all meltdowns, throwing out every single bad behavior she has ever tried. Our OT saw me try everything in my rather extensive arsenal, and she tried everything in hers. Nothing worked. DD went on and on until the appt. ended 2 hours later, with the OT and I completely exhausted and batterede. Oh, and did I mention that my three sensory seeking boys were all running around the therapy room jumping off equipment the entire time? I am quite sure that my OT will never look naively at DD's situation again. No one there can figure her out yet, but at least now they know the problem is real and ISN'T due to weak parenting.

It's probably good that it happened, but I still can't believe she did it.

Thanks so much for all the kind responses. It really helps to see things through the eyes of others! Please, if anyone else has a reply, please post away. You all really are helping me gain perspective.

[Ottakee]

A few more options:

Our respite is not through our adoption but rather through our local community mental health. That might be an option if they offer that in NC.

Another respite option would be college girls wanting to go into special education or parents of teens/younger empty nesters from church, neighborhood, etc. With dd, you likely can't have 80 year old great grandma watching her but maybe a 50 year old empty nester could give you a break.

Have you contacted the health department for special insurance coverage for them? My girls have CHildren's Special Health Care services. It is medicaid for specific medical conditions---a genetic disorder should certainly qualify. That would cover medical expenses that your insurance does not and might qualify you for mileage, respite, etc. as well.

Have you applied for social security disability for any of them? One or more might qualify which would get you medicaid and likely some cash assistance each month---and again open doors to more services.

Does your dd see a top notch pediatric psychiatrist? If not, I would certainly head that way. These kids are just so complex and for some kids, meds really help. I will say that meds have made about 90% of the difference here. With the meds the parenting, therapy, etc. can help. Without them, nothing worked.

School just might need to be an option. If you get too burned out, worn out, etc. then you aren't going to be good for anyone. You need to make sure to take care of yourself.

[melmichigan]

A few more options:

Our respite is not through our adoption but rather through our local community mental health. That might be an option if they offer that in NC.

Another respite option would be college girls wanting to go into special education or parents of teens/younger empty nesters from church, neighborhood, etc. With dd, you likely can't have 80 year old great grandma watching her but maybe a 50 year old empty nester could give you a break.

Have you contacted the health department for special insurance coverage for them? My girls have CHildren's Special Health Care services. It is medicaid for specific medical conditions---a genetic disorder should certainly qualify. That would cover medical expenses that your insurance does not and might qualify you for mileage, respite, etc. as well.

Have you applied for social security disability for any of them? One or more might qualify which would get you medicaid and likely some cash assistance each month---and again open doors to more services.

Does your dd see a top notch pediatric psychiatrist? If not, I would certainly head that way. These kids are just so complex and for some kids, meds really help. I will say that meds have made about 90% of the difference here. With the meds the parenting, therapy, etc. can help. Without them, nothing worked.

School just might need to be an option. If you get too burned out, worn out, etc. then you aren't going to be good for anyone. You need to make sure to take care of yourself.


:iagree:

[Dobela]

Ottakee has a great suggestion. Our insurance did not cover my son's OT and other therapies. Our OT suggested that we apply for the equivalent of our state's medicaid for him to cover therapies. It is disability based and we had to provide copies of medical records, therapy reports, a doctor statement, and so on to prove disability. It was a long process - mostly because it took them months to review his file - but he came out with a form of state insurance that covers his therapies. Our insurance covers everything else. Since it is also based on income, we pay a small montly fee to continue the insurance thru the state. Friends of ours pay nothing each month based on the sliding scale. We do have to resubmit tests and eval reports annually to confirm it is still needed, but other than that it has been fine. I know some people are against signing up for government plans, but for us it has been a wonderful way to provide much needed therapies for our son. Without it we could not have continued any of the therapies out of pocket and he would not have been doing as well as he is now. We had to apply thru a local Social Services office. I would recommend that you do this for each of your children. My dd (adopted from foster care) has also received a disability rating for hers. While we make too much for her to receive a monthly check, it does make available for us access to respite programs and waiver programs if we wanted to use them. It also helps establish that there have been issues for a long time should they need assistance once reaching adulthood.

I also have a friend that has successfully received subsidies for children she adopted privately that were much like yours. The federal adoption subsidy is based on several criteria including disabilities that has nothing to do with private/foster care adoption. She had to apply for it independently I do know, but I don't remember the rest. If you want to send me a PM with your state, I can ask her for assistance.

[Dobela]

You are completely spot on right in both of these areas. Regardless of my concerns, I think that we may need to look into what the school system can offer her, at least to explore it as an option. I really do need a break from her and she does need to see that others expect the same behavior that I expect. My boys need my attention as well...they have needs that are not completely being addressed. I am tired. We need some sort of respite but can't seem to get it.

On another note, our OT got a real education from DD today! Within 10 minutes of starting our appt., DD began the meltdown to end all meltdowns, throwing out every single bad behavior she has ever tried. Our OT saw me try everything in my rather extensive arsenal, and she tried everything in hers. Nothing worked. DD went on and on until the appt. ended 2 hours later, with the OT and I completely exhausted and batterede. Oh, and did I mention that my three sensory seeking boys were all running around the therapy room jumping off equipment the entire time? I am quite sure that my OT will never look naively at DD's situation again. No one there can figure her out yet, but at least now they know the problem is real and ISN'T due to weak parenting.

It's probably good that it happened, but I still can't believe she did it.

Thanks so much for all the kind responses. It really helps to see things through the eyes of others! Please, if anyone else has a reply, please post away. You all really are helping me gain perspective.
I would be interested in a purely curious (nosey) way to know if that experience changed the opinion of the OT.

As far as public school for your dd, I realize it isn't perfect. But neither is your situation now. Her needs are complex and most likely there is not just one placement that will make it all work. And even if it does work, it may only work for a few months or one year before it is readjusted.

I am very concerned about you. If you continue to burn out, your health will suffer and your marriage. The divorce rate for families with special needs children is almost double that of the regular population. Add in more than one child, attachment issues and the odds are huge if you don't find a way to get breaks and rest. You have to think about the consequences of continuing just as you are now - honestly. What is going to happen if you collapse from exhaustion or your marriage falls apart from stress? How will you or your dh continue? What will happen to the kids then?

Another option that might be available (that is in my community) is a school based in a theraputic setting. One of the community counseling services here has a day program for school age children with complex needs. It is not advertised or in the phone book so not many people are aware of it. It is kind of like a special education class in public school, except trained therapists work with the children daily along with specially trained teachers. And there is a small waiting list to get in. The public school pays for part of it, and the kids medicaid pays for part of it. PT, OT, speech are also available there. In the next town, one of the residential treatment centers also has a day program that is similar. Again, they are not well known because they are not advertized but they are good options.

I would also start looking for support groups for yourself. Not only can you vent to people who have BTDT, you can learn about other programs in your area to help your children. An added bonus is that for the local meetings here, childcare is often provided during the meetings so parents really do get a short break.

:grouphug:

[Twinmom]

A few more options:

Our respite is not through our adoption but rather through our local community mental health. That might be an option if they offer that in NC.

Another respite option would be college girls wanting to go into special education...

Have you contacted the health department for special insurance coverage for them?

Have you applied for social security disability for any of them?

Does your dd see a top notch pediatric psychiatrist?

To answer both of your questions all at once, I edited your posts. Hope you all don't mind!

As far as state services go, we are recent NC residents (in the last two years) and have not yet seen what sort of help the state would give us. While living in TX (where all the adoptions took place), we found that we qualified for zip-nada-nothing. It was really sad...we are one of those slip through the cracks kind of families. Our income is too high to qualify for everything but not high enough to afford all the out of pocket expenses. The specific disorders we deal with are disqualified (ectodermal dysplasia...excluded under all policies, SPD...underrecognized). We are private vs. public adoptions, so no Human Services folks would touch us. We did qualify for the adoption tax credits, but the adoption agency fees took the entire amount. Hmphh. I am a social worker, however, and I don't give up easily. Will be trying again here in NC soon.

As for the psychiatrist and the respite...we do see a great neuropsychiatrist for DD and she is already on medication for anxiety. We tried heavier drugs and they had unintended side effects...as in she went from meltdowns to acting as if she had no conscience and was totally possessed. Very scary...not going there again. We've looked into respite at the local colleges with no success so far, but I'm also not giving up there. DH, bless his heart, just offered to pay for someone to come in twice a week to help with laundry and the twins, just to help me keep things in balance.


I would be interested in a purely curious (nosey) way to know if that experience changed the opinion of the OT.

I am very concerned about you. If you continue to burn out, your health will suffer and your marriage.

Another option that might be available (that is in my community) is a school based in a theraputic setting.

I would also start looking for support groups for yourself. Not only can you vent to people who have BTDT, you can learn about other programs in your area to help your children. An added bonus is that for the local meetings here, childcare is often provided during the meetings so parents really do get a short break.

:grouphug:

As for our health and our marriage, we are concerned as well...though the marriage part is very strong. We know we aren't invincible, but we are very much on the same page and we are both really there for each other. Our faith and church community is sustaining us as well. Not at all to say that your concerns are unwarranted, because I share them completely. We are constantly working on ways to lessen the load, not always successfully but we are always looking! We also moved across the country just to find a better environment for our family and to reduce stress. I also have a prescription for Xanax to be used as needed. If I am very stressed, I can take one at night and I'll sleep like a baby...helps a lot. Can't really use them during the day, though...but that's okay. Don't like them during the day AT ALL! ;)

DH and I have talked and are looking into schooling options for DD. I know that there is a therapeutic school through the district, so I'm looking into that. Private schools around here are probably not an option for a variety of reasons, but even if I could do something half day through the district, it might be well worth it. We did complete a program for families through our therapist's office, but a regular support group might be nice...so long as they offer childcare! I'll have to start looking.

As for the OT changing her opinion...I wouldn't say her diagnosis has changed that much, but her opinion of my parenting skills has! She saw first hand what it takes to deal with DD's meltdowns and frankly, saw me at the top of my game as far as how I deal with her. Since I had the OT with me and a safe place for DD to flail about (the therapy room), I was able to show her all the different things we try and how we respond to DD. My impression is that she has a renewed respect for my abilities vs. the impact of what I have to deal with! The OT did mention concerns about the possibility of neurological damage, so I've begun looking into a neuropsych exam. I'd like to have a very thorough, objective look given to the situation and at the very least be completely sure of what we are dealing with here.

I cannot tell you how much I appreciate your concern and all the advice I've been given in this thread! You ladies are really awesome.

[stephanie]

Jenn, my heart just hurts for you. I know you are by no means looking for sympathy, but I have such empathy for you. I feel the overwhelming feelings for you through your post. I just wanted to remind you that you were chosen to be the mommy of your kids, despite what you see right now. YOU were chosen specifically by God because He knew you would be able to give them what they needed. That doesn't mean that you won't have days that you want to pull your hair out (or theirs :D), it just means that you are a mommy with many daily challenges as well as unmet needs. You are so inspirational to me as I look at my children and the challenges I feel I have with them. Feel free to vent as you need. I'm sorry that I don't have much advice to offer, but I will pray that God give you the clarity and direction you need.:grouphug:

[Twinmom]

Jenn, my heart just hurts for you. I know you are by no means looking for sympathy, but I have such empathy for you. I feel the overwhelming feelings for you through your post. I just wanted to remind you that you were chosen to be the mommy of your kids, despite what you see right now. YOU were chosen specifically by God because He knew you would be able to give them what they needed. That doesn't mean that you won't have days that you want to pull your hair out (or theirs :D), it just means that you are a mommy with many daily challenges as well as unmet needs. You are so inspirational to me as I look at my children and the challenges I feel I have with them. Feel free to vent as you need. I'm sorry that I don't have much advice to offer, but I will pray that God give you the clarity and direction you need.:grouphug:

Thanks, Steph. It's actually really nice to hear you say all that right now, since it seems like everyone around me just wants me to kick her butt. My DH keeps saying that no one but the two of us really knows what it is like or what she needs, but it's hard to remember that when I'm being told I'm not tough enough on her and that's why she's a mess. :glare: If the people doing the talking could walk a mile in my shoes, they'd eat their words...even the so called professionals! If tough were all that were needed, it'd have been done long ago.

It is really nice to remember that, despite any faults I may have, God chose me to be her mommy for a reason...because I'm the best one for her. I need to trust my instincts more and shut out all the voices but His. Thanks for reminding me! It's a great note to go to sleep on.

[Reya]

If controlling her behavior is too hard for her, she must learn to control WHERE she melts down. She can have a meltdown in her room with the door closed as long as she destroys nothing. Other place are off limits.

It may be unrealistic for her to simply stop losing it, but containing should be within her abilities.

As far as stimulation avoiding/seeking, do you separate their HSing areas? That could help reduce her level of tension.

(My brother's autistic. Yes, he learned to behave, though it was hard.)

[Twinmom]

If controlling her behavior is too hard for her, she must learn to control WHERE she melts down. She can have a meltdown in her room with the door closed as long as she destroys nothing. Other place are off limits.

It may be unrealistic for her to simply stop losing it, but containing should be within her abilities.

As far as stimulation avoiding/seeking, do you separate their HSing areas? That could help reduce her level of tension.

(My brother's autistic. Yes, he learned to behave, though it was hard.)

:iagree: I'd like to see her stay nicely in her room to have the meltdown and that's what I'm trying to teach her to do. So far, however, we have to either hold the door shut or lock her in (while sitting right outside the whole time) in order to get her to stay put. Part of her problem is being unable to settle without assistance (comes with SMD) and she actually fears being alone while upset. Isolation makes her crazy. If I can catch her before she's too far gone, she can go alone for a time out. My current strategy is to insist that she take responsibility for knowing that she has a disability and knowing that she HAS to take steps to settle herself before she's too far gone. (ie, this is your problem, not mine, but I am here to help you remember your coping strategies) This will be an uphill battle for her, but she can't depend on me to settle her down her whole life...and she can't impose her inner experience on the rest of us, punishing us because she's hurting. I understand that as she continues OT, her ability to control her senses will increase and this can be somewhat remediated. The problem is that I need solutions NOW so someone doesn't get hurt.

As for school...my kids are all young enough and/or struggling enough that it is difficult for them all to do work independently, so separate work spaces have been a challenge. She loves working by herself, but wants me beside her the whole time...isn't really practical for me. My solution has been to stagger work times with me for all skills based subjects, continuing to encourage them to work in their rooms when they feel confident. History and science are held together, but as long as the twins have some sensory input prior to sitting still, we manage that okay.

[Reya]

Argh! Her fearing to be alone makes it a LOT harder because, as you said, lots of kids use their meltdowns to punish others around them.

This sounds weird, but a warm, weighted blanket might help self-regulation, even for stimulation avoiders.

There's no shame in putting the lock facing the outside. My parents did that with me for YEARS because in the middle of a fit, I wasn't exactly rational. Ahem. I'd come out of my room, screaming, no matter what dire punishments were promised (and given).

For your twins, fidget balls might help them to be still for even longer.

For your daughter, you might try going to a timer-driven system. 5 minutes alone, 10 minutes with Mom, then to 10 minutes along, 5 minutes with Mom.

My DS, who has some minor issues that are Dx'd and some that aren't, does his work best alone but wants me to be with him ALL THE TIME. That
isn't realistic because I have DD, too, and he might as well have a three ring circus in the room as have her there. I have some things with him that are apart and some that are together, and if he starts to slide, it's usually because he hasn't had enough body contact that day.