I need advice for my emotionally disturbed DS

[peace love hope]

I am a regular poster on these boards, but I have created a new account for anonymity. My DS who is 9 has had multiple diagnoses over the years, and right now has a standing diagnosis of ADHD/Aspergers/ODD. I have been trying to get him psychiatric care for over a year, but I am constantly getting bounced around. My DS is prone to violent outbursts, and they have been progressively getting worse as he gets older. He has a developmental ped at a very reputable hospital. She also wants him under psychiatric care, but unfortunately unless you are paying cash, you are on a long wait list, or even worse you're told no new patients are being accepted.

Friday afternoon my DS had another meltdown, but this was worse than anything I have ever seen. I was trying to carry him out to the car to take him to the psychiatric ER, but I wasn't strong enough to get him into the car without him trying to run into the street or down the block. He started hitting and kicking me trying to get away and I called 911. They took him by ambulance and he was evaluated by a psychologist, psychiatrist, and a social worker. The psychiatrist made the decision to admit him. I had to leave him there, all alone, and it is breaking my heart. I was told not to visit him today. They said I could come this morning. Visiting hours are only for one hour. Monday he will be seen by a pediatric psychiatrist and then transferred to a pediatric psychiatric ward. They are going to reevaluate his current meds, and most likely adjust them.

I am terrified that this experience is going to make our situation worse. I am scared that he is going to hate me forever. I just want to make him well, and give him a quality of life that he deserves. I hate seeing him so down and angry all the time. It breaks my heart to think that if he doesn't get help he may end up in a group home. Has anyone else gone through this? Am I doing this wrong? I don't know what else to do right now.

 

[bookwormde]

Hang it there it can get better,

Often this type of situation at this young of an age (more often seen around 16) has many sources, and is not an underlying core mental heath issue, but a manifestation of not finding out how to best help the child with the core challenges related to the Autism genetics.

It sounds like you are working very hard at helping your child, but sometimes it is a matter of finding the right supports that fit your child since all out kids are different.

Most kids I see who become this clinically acute are on one or more strong or black label medications to manage behaviors. For many ASD kids this can be a disaster since they do not react typically to many drugs, so since it is summer see if you can work with his pediatrician to reestablish a non medicated baseline if this is the case. If you do not want to go completely clean a mood stabilizer like abilify, is often used.

Does he have a councilor/therapist who is experienced in Aspergers, this is a must for our kids.

Also, particularly if he is very smart, is he fully aware of his genetics and its gifts and challenges, this is critical for kids as they become more intellectually advanced.

Remember behavior and the presentation you are seeing is first and foremost communication, so digging deeply into what he is expressing is essential.

Also want to check as to what the meltdowns look like, is he injurious to himself or others, and what is your "reaction" to the meltdowns

It is counterintuitive, but often just allowing the meltdown to play out unimpeded and minimally observed (just enough to keep him safe) is typically the best practice, followed by a long recovery period before a gentle and non-accusatory social autopsy to see if he is will to provide some level of alternate (other than the meltdown) level of communication about how his day went.

Do you attend an support group for parent of HFA/Aspergers children?

bookwormde

 

[Goofygirl17]

I don't have any advice but wanted to let you know that I'm so sorry that you and your son are going through this. I hope the professionals at the hospital can figure out the best way to help your son.

 

[DVCJones]

I have no advice, but I want to extend a sincere hug to you. You sound like a mom who cares and trying to do the best for your son. I believe parents in your position need to hear (often) praise for everything they are doing. Maybe now that he has been admitted he will get the help he needs. It could be a blessing... Hugs.

 

[peace love hope]

First and foremost, thank you everyone for your kind words. I am getting no support from my family right now, and also lots of judgement. I am so grateful for any and all words of encouragement received.

Hang it there it can get better,

Often this type of situation at this young of an age (more often seen around 16) has many sources, and is not an underlying core mental heath issue, but a manifestation of not finding out how to best help the child with the core challenges related to the Autism genetics.

It sounds like you are working very hard at helping your child, but sometimes it is a matter of finding the right supports that fit your child since all out kids are different.

Most kids I see who become this clinically acute are on one or more strong or black label medications to manage behaviors. For many ASD kids this can be a disaster since they do not react typically to many drugs, so since it is summer see if you can work with his pediatrician to reestablish a non medicated baseline if this is the case. If you do not want to go completely clean a mood stabilizer like abilify, is often used.

Does he have a councilor/therapist who is experienced in Aspergers, this is a must for our kids.

Also, particularly if he is very smart, is he fully aware of his genetics and its gifts and challenges, this is critical for kids as they become more intellectually advanced.

Remember behavior and the presentation you are seeing is first and foremost communication, so digging deeply into what he is expressing is essential.

Also want to check as to what the meltdowns look like, is he injurious to himself or others, and what is your "reaction" to the meltdowns

It is counterintuitive, but often just allowing the meltdown to play out unimpeded and minimally observed (just enough to keep him safe) is typically the best practice, followed by a long recovery period before a gentle and non-accusatory social autopsy to see if he is will to provide some level of alternate (other than the meltdown) level of communication about how his day went.

Do you attend an support group for parent of HFA/Aspergers children?

bookwormde

We have tried the non-medicated route for many years. He responds well to the Adderall, but the problem is that it has such a short half life. I have been doing extensive research and have found a drug called Vyvanse that I think would work very well for him. I've also found multiple sources that state Adderall can cause violent outbursts. I am going to speak to the psychiatrist about this when he gets transferred to the new hospital.

He does not currently have ANY therapist. I have been trying for a very, very long time to get him psychiatric support. All of the doctors here are either not accepting new patients, or have extremely long wait lists. The last doctor I called couldn't give us an appointment for 11 months. When I asked what I am supposed to do with my son until then they told me to bring him to one of the inpatient facilities. It's really a disgrace. I am very sad that it came down to taking my son to a psychiatric ER, but at least he will now HAVE TO be followed up by a psychiatrist.

His meltdown have been increasing in intensity over the past 2 1/2 years. I am no longer able to just ignore it. On Friday he was trying to kick furniture out of the window, was knocking things over in my room, and became physical with me. They also last well over an hour.

I do not attend any support groups because I am a single parent, and I have no one to watch my kids. I am lucky that my parents babysit for me to work. I don't have any kind of social life at all, unless I bring my kids with me. Don't get me wrong, I love my children and I love spending time with them. But never having any time to myself is taking a huge toll on me, mentally and physically.

 

[CuppieCake04]

hello, I wanted to tell you, you are NOT alone. My son had the same diagnosis as yours, he too is also 9.

He has outbursts to. He has NOT become violent with anyone, but has destroyed his own things.

He gets so mad that his entire body shakes and he turns red. It is very scary to watch.

I too have issues with trying to get him psychiatric care. All they want to do it medicate him. I have issues with the meds that a therapist put him on. Risperdone. This therapist saw him for less than 30 mins. And said he needed that med. I disagreed she DOES NOT know my child. Hs ped. who has seen him snce birth agreed that he needs COUNSELING not meds.

My son takes 2 mg of Intuniv and 20 mg of Vyvanse. As I said before he still gets angry weither he has the meds or not.

My son also often talks about how he hates his life and he wished he were dead. but that isusually during an anger outburst. its very scary o hear a 9 yr old say these things during his episodes.

When he is not angry he is a very loving child.

If you ever need to chat with someone going through the same things as you you can contact me via private chat.

I hope you and your son get some answers today

 

[bookwormde]

Being a single mom and not having a supportive family is exceptionally difficult. Contact your local Autism society and see if they have any groups where you can connect with other parents for support.

I would like to be optimistic about the psychiatric hospital, but my experience is that it is very rare that they have anyone who well versed in Aspergers and more often than not do mare harm than good in the long term (Psychiatrists get little or no practical training is Aspergers).

What you are experiencing is not uncommon, but progress takes finding the "right" supports which is very challenging to do on your own.

 

[happily single]

Where are you located?

Your story sounds ALot like my son, except it all started when he was 7. He had numerous extensive hospital stays. In RI the 'average' hospital stay is less than a week and he would stay for Months. After about a year and numerous stays the dr's and hospital, and the State, tried to for e him into residential group home living. I refused. He is now 14 and doing great!

I will say the first few months i would breK down and probably should have been medicated myself. I couldnt sit through a visit or meeting with the dr without sobbing hysterically

It will get easier and hopefully he will get the help he needs

 

[peace love hope]

They released my DS today. I went in to visit him, with the understanding he was going to be transferred to the pediatric unit. Today was the first time he was evaluated by the pediatric psych. The doctor pulled me aside and asked how I felt about bringing him home. I had some concerns, and spoke to the doctor about them at length and came to the conclusion that he is better off at home. He is now on a mood stabilizer twice a day in conjunction with his Adderall and Kapvay. I agreed with the doctor that two or three more days in a confined setting taking the same meds he can be taking at home is not going to fix any of his issues. He was discharged with a follow up appointment on Friday. The pediatric psych confirmed that he does indeed have Aspergers (a few teachers tried to say that was an inaccurate diagnosis) and ADHD. I spoke to them about switching the Adderall to Vyvanse, but they said to speak to the new psych about that since they will be the one following him now.

I am SO happy to have my baby at home with me. This has been the worst experience of my life, and I have lived through a lot. The big problem is going to be getting my family on board with his care, especially since my parents watch him while I am at work. They need to follow through with my behavioral plans, and they can't fly off the handle. This has already been an issue today. I asked the doctor if he had a spare bed for my mom, jokingly of course. She didn't think it was so funny.

 

[poohguys]

I just wanted to say that I am glad your DS is home and I hope this was the step to get you all the help you have been trying to get. It is a big help to have the support from your family. I hope they come around and see that they need to do what you are telling them because it is what best for DS. On a side note my DS who has ADHD was on Vyvanse and I did not like the affect it had on him. It seemed to give his personality a nasty side which he has never had. I know everyone reacts differently to the meds, but just a though. ))

 

[WantToGoNow]

My ds12 has been on 50 mg Vyvanse for 1.5 years now. He was diagnosed as ADHD and possible ODD. His behavior was like switching a light switch. He went from being very argumentative, moody, purposely hurting his sister, throwing things, defiant to his teachers and very poor grades, to a well behaved boy with all A-B's within one quarter. His teachers said they have never seen such a change in a child. The only bad side effect we had was the loss of appetite, he lost 40 pounds within the first 6 months but he has leveled off and maintained for the last year.

 

[joeswife1109]

My son is 12 and has a diagnosis of ADHD/Aspergers/ODD. He is on 50 mg of Vyvanse and has been for a year and I love it. He is also on Abilify 5 mg as a mood stabilizer and it works wonders.

Can I recommend that you look into state medical assistance? I live in PA and never thought I would qualify because I have a very good income but here it's not based on income but on need. Since my son has a disability, he qualified. This qualified me to get in-home therapy for him that my primary insurance would never do. I found an agency that is independent and they are paid through medical assistance. For the last year my son has has 3 specialists here in my house a total of 10 hours a week. They are a godsend. My son needs so much help to deal with his behavior as well as basic life skills. They are phenomenal. Also medical assistance pays for all his doctor visits, dental visits. Without this though, the therapies would have NEVER happened. The 3 women I have come to my house have formed a great bond with our family and it if it wasn't for them I wouldn't have my sanity.

I also a year ago attempted to check my son into a psychiatric hospital as he was starting fires in our house, emptied a can of WD40 in our house, the impulsivity was horrible. Long story short I couldn't even get him admitted. The hospital told us it wasn't bad enough. I spent two 8 hour trips to the ER to be denied twice. It's heartbreaking and gutwrenching...I know very well how you feel.

Best of luck to you...

 

[ratlenhum]

I suggest looking into lamictal. It's a seizure medication but also acts as a mood stabilizer. We started it with my son for absence seizures but the affect on his mood, meltdowns and aggression has been amazing. You have to start very low and slowly increase over time due to a risk of Steven Johnson's syndrome. It took us a few months to get to full dose but we saw changes every increase as we built up.

Vyvanse made my son self injurious which he never was before the med, an Intuniv helped him for two weeks and stopped working. Lamictal has been amazing and he's been in it for about 4 years.

 

[JoiseyMom]

hello, I wanted to tell you, you are NOT alone. My son had the same diagnosis as yours, he too is also 9.

He has outbursts to. He has NOT become violent with anyone, but has destroyed his own things.

He gets so mad that his entire body shakes and he turns red. It is very scary to watch.

I too have issues with trying to get him psychiatric care. All they want to do it medicate him. I have issues with the meds that a therapist put him on. Risperdone. This therapist saw him for less than 30 mins. And said he needed that med. I disagreed she DOES NOT know my child. Hs ped. who has seen him snce birth agreed that he needs COUNSELING not meds.

My son takes 2 mg of Intuniv and 20 mg of Vyvanse. As I said before he still gets angry weither he has the meds or not.

My son also often talks about how he hates his life and he wished he were dead. but that isusually during an anger outburst. its very scary o hear a 9 yr old say these things during his episodes.

When he is not angry he is a very loving child.

If you ever need to chat with someone going through the same things as you you can contact me via private chat.

I hope you and your son get some answers today

The two meds your DS are on are for ADHD, those are two of the ones mine are on. They won't do anything to stop anger outbursts or meltdowns.

 

[My2CrazyGirls]

I just wanted to offer hugs and to say hang in there! What state are you in, maybe we can find you some extra resources? The person who mentioned PA is correct, that is the best state to be in Unfortunately we are not in PA.

 

[Kay1]

The two meds your DS are on are for ADHD, those are two of the ones mine are on. They won't do anything to stop anger outbursts or meltdowns.

Could I ask which meds you've had luck with when dealing with anger outbursts and meltdowns? My son is 23 and still having those.

Also, if OP is still around, it's great you're dealing with this now while your son is still small. My son is about 6'3" and weighs over 300 pounds.

 

[tinkerbelle1987]

Just wanted to chime in and let OP know that you are not alone. I have raised three children, two of them have Mental Health Issues (Bipolar, Schizophrenia, OCD, Mental Retardation). I can certainly see where you are coming from. I have had to admit both of them to Psych Units numerous times. Each time it does not get any easier, but I know that I am doing what is best for them. My Middle Child was born with his issues and as a teen he was diagnosed with Bipolar I with Psychotic Features, My daughter was not diagnosed until she was 16. There have been times I wanted to scream, run, yell, punch the wall and just collapse. I have a niece that was just recently diagnosed as well. Her mother is having a very rough time with her right now and she has been admitted as well. We finally had to place our son in a residential treatment facility for a period of 3 months and then we brought him back home. I know it is something we always live with, it has disrupted our lives and as a mother it breaks your heart to see your child go through this. I used to tell my children, Mother has done all she can,now its time to let the professionals help you. Best of luck and feel free to PM me anytime if you need someone to talk to who has been there.