Help and Advice needed

[mamaloya]

OK guys, this is a hard post for me. You guys were awesome when I was in a wheelchair, so I know you are the ones to help me here.

My dd13 was recently diagnosed as developmentally delayed. Yes, I said JUST. I knew from 5-6 that something was not right but no one would listen to me. There are some PTSD issues that caused it. REALLY long back story that I am not willing to talk about. If you figure it out, please do not post. She was diagnosed over the years with ADD, ADHD, PTSD, IED, ODD, bipolar, depression and PTSD. This alphabet soup does me no good. She has been on concerta, lexapro, geodon, seroquel, and is now on risperdol. The risperdol helps, when I can get her to take it.

She is now bigger than me and the issues are getting much bigger. In Sept, she attacked me and I had her arrested hoping maybe this was a discipline thing more than anything and she would get the point. She was first put back in a psych hospital for a 6th time and then to juvenile lockup for 2 weeks. She is on probation and is at a special school now with a 1:4 teacher/faculty:student ratio. They are helping a little. She is still having some major issues. The doc this morning wants to put her in long term treatment for 5 months as she has now been in the psych hospital 7 times for 2 weeks each.

Here are some of the things... When told no or grounded, she begins screaming, yelling and throwing things worse than even any of my toddlers would have ever considered. I am a strict mom and my toddlers threw maybe one or two major tantrums and they knew not to do it again. She had tried to attack me a couple of times before she succeeded, but I was always able to get her into a safety hold before this last time. She is negatively impacting her 3 younger siblings with this.

When allowed out of my sight, she makes very unwise decisions that can be dangerous to herself or others. The fact that she can't have the freedom of most 13 year olds, is a trigger for her. I allow her to have friends over so I can supervise, but that is not always possible. Birthday parties and such that friends have.

She has no filter or boundaries. She will pick her nose or scratch her backside, clear a wedgie (sorry for the frankness) in public w/ no discretion. She will speak WAY to frank to complete strangers. It is like she is 2 or 3. She has a cow if one of the kids touch anything of hers or if I pick up her stuff to clean, but she will help herself to other people's stuff. She will hug complete strangers. She will go along with the crowd just because that is what everyone is doing with no reasoning.

I am at a total loss here. The psychiatrists and therapists are not sure if this is a temporary thing that will end when the PTSD is treated or if this is something totally unrelated and was there already, just not noticeable because she was young. Is this a behavior thing? I have to admit that since the attack, I am scared to discipline her. Is this something else that one of you recognize?

If it is PTSD caused, then 5 months in long term treatment may be the answer and she can get help. If not, then it will be waste of time and I am worried that it may be counterproductive and make her angry at me. She refuses to go to counseling to get help for the trauma, but her lack of dealing with it is ruining her life. I am scared that she is going to wind up dead or in serious trouble with the law by her lack of reasoning.

Please feel free to speak your mind. I need honesty, not PC baloney. I am thick skinned and will take no offense. BTW, I have 2 older kids and 3 younger ones that are not having nor have had these issues.

Thanks,

Sandi

 

[jmartinez1895]

I do not really know what to tell you or have any advice because I have never had to deal with an issue like this. I will be praying for you and your daughter, if thats ok with you. I do hope that things get better for the both of you very soon.

 

[mdsouth]

Hi,

I am sending pixie dust your way and for your DD along with a hug and prayer.

I can't decipher most of the acroymns (letter labels) but I wanted to let you know that you are in my prayers.

 

[honugirl]

You might want to have her cortisol levels tested. Long term stress can cause elevated levels. Elevated levels in turn can contribute to knock down, drag out fights. I've been battling with Cushing's Syndrome, which is excess cortisol production (mine was caused by tumors though and has nothing to do with the stuff I face when I was younger). Since getting my cortisol levels down with the use of ketoconazole (do not do this unless you are seeing a specialist trained in the use of it to reduce cortisol. It can be VERY dangerous and not something to mess around with!) I no longer rage like I used to. I'm also not as depressed.

When I was younger I had most of those labels and tried every single one of those medications and they didn't work on me.

Might want to also have her evaluated for SPD (sensory processing disorder). It's a hard one because when you are undiagnosed (like I am currently, but making headway towards a diagnosis) you spend so much energy trying to hold things together and then you just snap because you literally can't do it any more.

If she does have a developmental delay, structure is very good. Keep her to a schedule and do discipline her. If she's going to function in daily life, she has to learn that you can't go off every time someone tells you something she doesn't like. It takes training and strategies to control the rage.

A little secret too from someone who spent time as a child in a therapist's office... you can make her go, but if she's resistant to it, it's not going to do much good. If she's smart at all, kids figure out what the therapist wants to hear and bingo! They're out of there... It took me many years to deal with the demons in my past. It wasn't until I was in my 20's that I decided to get a handle on it and now I'm almost completely free of them.

Good luck! It's a tough thing to go through, for both you and her.

 

[bookwormde]

A large percentage of children (especially the higher functioning ones) who get “alphabet soup” diagnosis end up having the actually having autism genetics. All the diagnosis you have a common manifestations for a individual who was never properly diagnosed and failed to receive the proper supports (particularly if they were put on strong medications). Please find a major medical center, which has a specialist group for Autism spectrum genetics and have her evaluated ASAP. Typically psychiatrist have very little competency in this area and miss it completely and just treat symptoms not the underlying variations.

It is also all to common for children with autism genetics to be candidates of PTSD since there atypical presentation often result is chronic abuse (which is sometimes initentional)

Get a copy of Tony Attwood’s “The complete guide to Aspergers” (available on Amazon for $17)and you will be able to get a sense of if you child might be mid to high functioning and still have Autism genetics or some of the major characteritics (like SPD (spv), social skills/TOM deficits or EF differentials).

The good news if this is what it is even now major progress can occur with the proper strategies and supports.

bookwormde

 

[mamaloya]

Thanks ya'll!!!!

I appreciate the prayers and advice. I will get her cortisol levels checked. I will also get that book. So, they can do a genetics test for ASD? I thought kids with autism avoided social contact not obsessed over it. It is like she has to hug and touch everyone she sees. She has gotten better about complete strangers that don't acknowledge her, but if they say "hi", they are in trouble. LOL

I have another question. How do I respond to folks who are taken aback by her forwardness and odd behavior? Do I blow them off? Just tell them she is my special girl? Some people are really weirded out by the attention she gives them or their children. Some people appreciate because she has a way with kids and is great with calming cranky kids and ending temper tantrums just by saying hi to them. LOL

I knew you guys would be great. I have not talked to anyone other than the psych docs about this because I don't know what to say. I will talk to her regular ped as soon as I can.

 

[lucigo]

Even though people like to bunch them together there are a whole different set of problems that come with higher functioning autism and Asperger's syndrome. Kids with Asperger's want to have social relationships, but they struggle with how to make that happen. People who don't know a lot about autism spectrum disorders have a tendancy to think that "higher functioning" means easier, when in reality a moderate functioning kid can be much easier to handle on a day to day basis than a high functioning, high anxiety, high needs child. That doesn't make one better than the other, they are just different.

There are a lot of people on these boards more qualified to talk to you about Asperger's, I am only an expert in my child, and every ASD child is different.

Praying you find a plan that will work for your daughter. Hugs!

 

[aman6]

I have a 17 year old daughter with Asperger's Syndrome. Your daughter sounds just like her. When she was 12, my daughter attacked me and was sent to the "stress unit" for 3 days. She has been there a total of 4 times in the last 5 years. She has severe mood swings and a violent temper. Luckily, through years of therapy and finding the right meds (currently on Invega, similar to Risperdal but in a time release formula) she is doing much better.
lucigo is right. These "higher-functioning" kids have life much harder than the middle to lower functioning kids. I know first hand because I also have an 8 year old son with mid-functioning Autism. Asperger's kids want so much to be "normal" but have such severe social anxiety that it is almost impossible for them to fit in. My daughter takes her anger out on me. Not so much physically anymore, but verbally. And you are right. No matter what rules and boundaries you try to set, they don't care. They ignore all of it. Even when my daughter's friends get grounded and they obey their parents, she gets angry because they are ruining her life, ruining her fun.
There is no simple answer to help you. Just know that you are not alone and I am glad to help in anyway I can. Believe me, I have been there, done that.

 

[sl_underwood]

I am the mom of a little boy with very similar issues. His dx is reactive attachment disorder, pddnos, adhd, ptsd, odd, ocd and a traumatic brain injury.
He is only 6 and on several medications just to function. Risperdal is one of the few that has worked for us as well. It has pretty much ended his self harming behaviors and though he still rages every now and then it is alot less frequent. His behaviors mostly have triggers but avoiding those triggers is nearly impossible would have to lock him away from the world. He was adopted after years of abuse and being passed around, thrown away, etc. His biggest trigger is the holidays between halloween and christmas as thats when he entered foster care (two seperate times during the holidays and was abandoned at a walmart on Christmas eve one year) he also can be triggered by a mom who is loving her baby. He is angry and it is justifiable anger. What we are working on is teaching him that its ok to be pissed, life threw him alot to deal with but there are other ways to deal with this anger. Hurting himself or lashing out at the ones who love him is not the way. We focus alot on positve behaviors and run a very tight ship. Our lives are very scheduled, but the schedule actually helps him maintain appropriate behavior, knowing what is going to happen next seems to help his anxiety and self control. I dont have a whole lot of advice but I do know what you are dealing with and I am here for you. It is hard and not always fun but we have to keep loving our kids regardless of how they act and we have to let them know they are loved, good or bad.

 

[Kat77]

I have a variety of special children at home. (2 Apsies, 1 Tourettes, and 1 RAD).

Personally, my brain is screaming reactive attachment disorder from your description. DD10 has reactive attachment disorder. I do not make many comments about her condition on the boards b/c it's just not easy to understand.... she makes life so unnecessarily difficult one minute and can charm your socks off the next.

I'll come back with some good links...

I want to add that DD11 w/TS has a mood disorder that we've just recently started trying out meds, with awful results thus far. Abilify has her tantruming like a toddler on steriods and we are pulling her off this week (before I lose it!). Zoloft had her high as a kite\giddy happy on a tiny dose. My point being that some behaviors could be side effects from meds she is on. Abilify amplified all the behaviors hoped to ease.

http://www.center4familydevelop.com/helpteachrad.htm

http://www.attachmentdisorder.net/helpforteachers.htm

 

[mamaloya]

Thanks

Any ideas on what exactly to ask my pediatrician about? What kind of referral do I ask for? What kind of doc do I want to see? What kind of tests?

I have been suspecting something wasn't right since she was 6 or so. I kept being told I was just comparing her to my older kids and every child is different.

I forgot to mention a couple of other quirks she has. She compulsively paces. She has an exhorbitant amount of energy. She paints everything, her walls, her bed, she also likes to paint her hair different colors all the time. Colors like blue, red, purple, she even put a black hidden mickey in her hair once. She has little bags from different stores that she found interesting stapled on her walls. She hoarded things alot when she was 3-6. She would take little things from people, stupid nonsense stuff, and keep it in her top dresser drawer. She also would tie everything. I had to pull over one time because she had found a string in the van and tied herself up and her feet were turning blue before I noticed. Luckily I had scissors and could cut her free.

 

[Kat77]

The obsession with colors and patterns does sound very bipolar.

Thanks
Any ideas on what exactly to ask my pediatrician about? What kind of referral do I ask for? What kind of doc do I want to see? What kind of tests?

A Child Psych. or therapist experienced w/RAD children. Try searching RAD websites for professionals in your area.

I dont have a whole lot of advice but I do know what you are dealing with and I am here for you. It is hard and not always fun but we have to keep loving our kids regardless of how they act and we have to let them know they are loved, good or bad.

I concur. Hugs and support from those who have BTDT are invaluable to us moms.

Being brutally honest, having a RAD dx is nothing more than putting a name to what is going on. There is no absolute therapy or pill to make life easier and there are MANY quacks out there with plans to "fix" our radishes that border on insane. IMNSHO, lying to a compulsive liar, to teach them not to lie, is absurd!
Remember rebirthing? THAT therapy was linked to RAD at one time....

 

[bookwormde]

No there is no genetic test “yet”

It is a myth that ASD kids do not want social contact, they are just not “driven” like NTs, but lack the innate social skill to do it effectively and often their perfectionist nature makes them frustrated to the point where they obsess on it. What you are describing is typical “Aspergers” differentials (if there is such a ting as a “typical” child with Aspergers). Since we do not project social pressure and pretense our relation ship with children, particularly those under stress are commonly exceptionally calming to them.

Once you read the Attwood book you will understand (by the way he is the leading clinician in the world on the subject). Once you understand it is much easier to “explain”.

Quite honestly you need to “fire” your child’s whole current clinical team since all indications are that they have caused you and your child to miss opportunities and have done major damage by their incompetence.

From lots of experience with families, if she is on the spectrum, just having an understanding of “why” she has challenges (and gifts) will have an unbelievable impact on her anxiety levels, once you are comfortable having her read Attwood and such books about the amazing (actually irreplaceable) contributions people with autism genetics have made will allow her to “blossom”.

Do not ask, tell you pediatrician that you believe he failed (lacked the competency) to consider that Autism genetic might be the core underlying source of your child’s issues and that you want an evaluation by a major medical center with a full highly experienced Autism department. Contact your local Autism society chapter and ask for their Aspergers “coordinator” they should be able to give you some guidance and parent support groups where you can get leads to resources.

But before you do anything read Attwood.

Oh and sorry for not saying, “welcome”

bookwormde

 

[mamaloya]

Once you read the Attwood book you will understand (by the way he is the leading clinician in the world on the subject). Once you understand it is much easier to “explain”.

Quite honestly you need to “fire” your child’s whole current clinical team since all indications are that they have caused you and your child to miss opportunities and have done major damage by their incompetence.

But before you do anything read Attwood.

Oh and sorry for not saying, “welcome”

bookwormde

Thank you, I will definitely read that book.

As for firing her "team"... She has no "team". We were military with NO continuity of care. We never got the same doc and just when I found one interested in helping, either he or us would PCS. It was horrible.

I also fought to get her a full psych eval for 5 years and it got denied denied denied. Now that I filed charges against her for the attack on me, the state is supposed to be doing one. At least one good thing may come out of that.

Now I am in the civilian world. The army has screwed up our benefits. We had medicaid and Tricare (military insurance). Then Tricare dropped us by mistake and it is a jungle of red tape and phone calls trying to reinstate it. Good news is that medicaid will pay for a psych eval. Bad news is that there is a 6 month wait. 7 years ago we were medicaid and they agreed to pay for one. We had an appt 6 months out, but then Katrina hit and then we were military and Tricare denied it. I homeschooled and found that in NC the school system would do one, so I enrolled her in PS for a semester. The school decided that all of her probs were caused by homeschooling (despite the rest of my kids being "normal" and are now in PS doing awesome) and denied doing the test. I pulled her and the damage done by that semester took me 6 months to correct. When I left my husband and entered my kids in public school here, she tested a grade level ahead. I told them that I did not want her put ahead but they insisted. She was not ready and struggled.

I am going to get her an appt with our pediatrician's office from years ago that had originally got medicaid to cover a psych eval and start over there. She has been hospitalized 7 times at 3 different hospitals. The one she was at 4 times always had a diff doc, but the same therapist. The therapist is the one that says she is developmentally delayed. The psych we had on the outside was horrid. In this area, child psych are hard to come by. I found one that I think is listening though. We had our first appt Tues and another one next month. I will mention this discussion to her and see what she says. This last meeting we talked a long term residential treatment center.

I love the Children's Hospital here in New Orleans. I will see if they have an autism center.

You guys are awesome. I am in tears with all the kindness and compassion that ya'll are showing me.

 

[bookwormde]

What you are looking for is a developmental psychologist of developmental neurologist, stay as far away from psychiatrists, it s rare to find one that has any competency this area.

bookwormde

 

[mamaloya]

What you are looking for is a developmental psychologist of developmental neurologist, stay as far away from psychiatrists, it s rare to find one that has any competency this area.

bookwormde

Thanks, now I know where to start.