How do you survive?

[raraavis]

I have an almost 6 yo DS (only child) with Autism Spectrum Disorders (ASD) (high functioning), ADHD, DMDD, ODD who completely wrecked my life. He has made my life a living hell. And he is only 5.The last time I was happy was 5 years ago. Our house and lives are WWIII. He is extremely aggressive, destructive, always angry, does not have any friends, hates making people happy, he is attacking us with knives, forks, pins, throwing things at us, you name it.
I dread picturing my life in one more year. I cannot take any more of this.
I hurt for him, for me, for my husband, for the beautiful life we hoped for which turned into the darkest nightmare with no end in sight. It is no longer only about the lost dreams, it is about the extreme fear and dread of what is to come...
Have you managed to actually have a life while having such difficult children? I am desperate for hope and help...I am actually considering separating from my husband (who has become just a roommate because of all the stress we live in) just so we can each get some life back when our son is with the other parent.

 

[Crayola13]

Is he in therapy? What about you and your husband? Are you two going to counseling? This sounds so hard.

 

[raraavis]

Yes, he gets counseling at the school and privately. We tried neurofeedeback, play therapy, parent child therapy, private schools for SN kids but he was kicked out from everywhere. 6 weeks ago we had to enroll him in the public school because there was nowhere else he would be accepted. He is in a behavioral class with 3 other kids, but he is by far the worst. He is also taking Risperdal which initially worked, but it does not seem to do much any more. To make matters worse he is undergoing chemotherapy for an eye tumor which impaired his vision in that eye. Our hearts are completely broken. we don`t know how to handle him anymore given his new health problem on top of everything else. However, the behavior is by far the worst thing to deal with.
Mu husband and I have been in therapy in the past, but we have no time for that anymore. Between our full time jobs, talking to his school almost on a daily basis, taking him to therapy and chemo there is just no more time. I just don`t see how we can live like this...

 

[BusynMember]

What is DMDD and who diagnosed him? Was any sort of specific help recommended? If this is autism, and I have a 23 year old woth high functioning autism, he may improve, as my son very much did, with interventions specific to communication and social skills. But my son was cranky sometimes when very young, but never violent. Still his inability to express himself caused a lot of frustrstion that went away once he could express himself.

Have you looked into kind, caring live in schools where you can visit, like residential treatment? He is young for that but he sounds as if he is dangerous to all and may need 24/7 help/care. You cant watch him all the time. They can.

You and your husbands needs are important. If this were me, and i have had troubles with a few of my kids, I would make sure I had time for therapy. This is so hard to do alone. Im so sorry for all of you.

 

[HMBgal]

DMDD: Disruptive Mood Dysregulation Disorder. New, added to last DSM manual. It's controversial in that not all psychiatrists believe it should be a diagnosis. If you Google it, you'll see it. My grandson's last child psychiatrist diagnosed him with this, in addition to ADD and anxiety. It kind of fits him, but not completely. Some people say it's a diagnostic home for kids that seem bi-polar, but probably won't grow into full-blown bi-polar (how they know that, I have no idea). His current child psychiatrist didn't even know what it was, and he isn't convinced it's a real thing. Kind of like ODD: describes behaviors and symptoms, but not why. It did kick my grandson into another class of drugs and that's when he started on Abilify, in addition to Intuniv. Stimulants made things worse. His current psychiatric wants to try taking him off all medications over the summer to see what we've got now. He's 10 and things have changed so much since he first started displaying his issues (we knew there were problems in his toddlerhood, but it really hit the fan in kindergarten).

I'm sorry your family is really be put through it. Stick around: lots of good people here. No judgments and lots of commiserating and good advice.

 

[BusynMember]

Thank you. I like that diagnosis better than bipolar for a child...it is also controverrsial.

 

[JRC]

Raraavis, I am so sorry that your situation is so hard right now. Have you looked into weekend respite care for him so that you and your husband can get a break? I don't know in general where you live but if you google "weekend respite care children" and your area you may find some options.

SWOT, from what I understand, that is exactly the reason for the newly classified condition DMDD--because doctors and parents are wigged out by diagnosing a child with such an impairing disorder as bipolar. Some doctors don't think it's possible to diagnosis bipolar in children. Others will diagnosis it, but provisionally because it's hard to tease out bipolar from other co-morbid diseases. This DMDD diagnosis is like a place holder until the child is older and they are sure. Sadly, I know from my own child's experience that children absolutely can have bipolar disorder. And no matter what you label it, the drug treatments are the same.

 

[BloodiedButUnbowed]

I am very sorry for everything you are experiencing and I commend you for being honest and brave enough to openly discuss it. Our problem children, and the complex relationships we have with them (love/hate), are so far removed from most people's conception of what it means to be a parent that many of us feel very ashamed....for secretly admitting to ourselves how much better life is without their disruptive, destructive presence.

You are far from alone.

I would highly recommend that you begin asking for outside help. This can be in any number of forms. If he doesn't have an IEP yet, you should begin that process. If he does have an IEP, get a free advocate (your state board of education should be able to provide names) and begin to make the case for a residential placement. If you are not safe in your own home, you can contact your state's department of human services and explain the situation. Others have walked this path (I have not) and can give you much better information, but if this was my child I would be in front of a judge explaining that he is very sick and I cannot provide the care he needs in a home setting. He needs a residential school equipped to handle children like him.

He will destroy your marriage and your sense of who you are if you allow it. Don't allow it.

 

[ksm]

Ask the doctors about DNA testing to see what medications is best for him. It will show what enzymes he has, and which medications are metabolized the best by his body.

I don't know how serious the eye tumor is...and I am so sorry that he and you guys are dealing with that. I assume he has had scans to make sure there are no other tumors? Would this eye tumor be responsible for his behaviors?

Can you ask your local mental health facility about the SED waiver? Sometimes children qualify for it, it is a short term medical card, even if you don't qualify for a medical card based on your income. It might cover a case manager and respite care, plus get you on the radar that your family needs help dealing with all of this.

With the medical card, it usually means no more co pays and deductibles...

Ksm

 

[Wiped Out]

Others are giving good advice, I want to add in my welcome. When I came here in the middle of the night in 2004 I thought my son was heading for jail when he would be an adult and he was only 5 at the time. He was violent, angry, ADHD and wearing my husband and me out.

He was eventually diagnosed with Bipolar Disorder, ADHD, Executive Functioning Disorder, Severe Dyslexia, and a cognitive disorder. There seemed to be no hope at times. This place helped a lot. We also had to advocate to get a lot of services for him, in school and out. We kept up with twice a week therapy for years, not really sure it was doing any good. We didn't think so at the time.

However, he is now 19 and still a difficult child but not like in the past. He is not violent, he works two jobs, and volunteers at other jobs. He is doing very well and is a much different kid than he was at 5, thankfully everything is so much better. Please know that there is help out there.

Also it is super important that you take care of you. My husband and I did a lot of tag teaming when our child was young-not sure we would have survived otherwise. We also both exercised a lot-it helped immensely!

 

[pigless in VA]

Welcome, raraavis. Since no one else has mentioned this, get a copy of The Explosive Child. My son was much like yours when young. I wanted to return him to the hospital for a refund. Reading that book helped me to get some semblance of order into our lives. I also realized that I was extremely angry at him for turning my life upside down. It took awhile, but I found a way to deal with my own anger, so that I wasn't yelling at him all the time. I knew that if our house was going to calm down, that I had to be the one to lead the way. It was very difficult, but I worked on it steadily.

I found a couple of sitters who could handle Ferb for short periods of time and that helped, too. I discovered that he worked best with high energy teenaged boys who could take him to the park and wear him out.

We understand. You're in the right place.

 

[raraavis]

Thank you all for you support and input. You have given me really good suggestions. No, I have not looked into the respite care, but I will. We have no family here other than my mom who lives with us, so DS is always with us. He has zero friends, has not played with a child in over a year, so he cannot go anywhere for a playdate or a sleepover.
Our world has gotten smaller and smaller, it is just us. Friends prefer to only call, they do not want their kids around our son. We cannot go anywhere with him, because it is actually a waste of money and it is even worse and more stressful than at home. We love to travel, socialize, used to go out every weekend with friends and their children, but not anymore. We are now completely isolated. Part of it is by choice because both my husband and I are severely depressed, despite both being on antidepressants.
I do own both versions (the old and the new) of the Explosive Child and maybe other 30 books of how to raise children like my son, but any strategies we use work only for 1-2 days max. It is true that our patience is very limited lately and we give up easily. I am currently reading "How to talk so kids will listen and how to listen so kids will talk" and I promised myself to try my best to keep calm and implement the strategies for as long as possible.
Yes, I do believe that he will wreck our lives completely, but I feel there is nothing I can do to stop that. We have tried everything we can think of, spent an enormous amount of resources on his therapies over the last 4 years, but things are getting worse. However, I just do not envision placing him in a residential center at this time The health issues make decisions like this very unlikely even in the future. I love him with all my heart, but I also have a lot of resentment towards him even though I am completely aware that he is a very sick child and is not his fault at all.
@pigless in VA and @Wiped Out . Thank you so much for sharing your sons journeys. I so needed to hear that there is still a chance (however small) that my son may not be completely lost and that a miracle might happen for him and for us.
@ksm we have done the DNA test for the medications and everything was normal, he is a normal metabolizer for everything. I am not sure what the SED stands for? The medical card sounds great.
He does have an IEP, we hired an advocate, will have another ARD meeting on Thursday. The teachers seem extremely nice and eager to help as much as they can, even more than what we asked for. They seem genuinely interested in helping us as they know we are very committed parents and the whole situation is just so sad. I do think that the eye tumor and the chemo have made things worse, but they were never good to begin with. It just pushed things to a whole new level of tragic. He is pale, his hair is falling like crazy, but is just as full of energy. I oscillate between being mad at him for being so out of control to being utterly heartbroken for what he has to go though with the chemo and what a hard life he has and will have. He is not even 6 yet... It is just a very complex and sad situation...

 

[pigless in VA]

What happens when you take him to the park? Will he play with other children there? It's like you need to find a tiny island of positive behavior in him somewhere and build on it. Does he like swimming? One autistic kid that I worked with really enjoyed that and dancing. At 5, anything you can find that wears him out physically is a good thing. I don't know how much the chemotherapy is playing into his behavior, but I can bet it is. How is his pain level? Is that a factor?

What does he like to do at home? Does he have any special interests?

 

[ksm]

SED waiver...I think it stands for severely emotional disturbed...

Both my girls qualified for about 1 year, they had a case plan and once they worked thru it, and behavior improved, the insurance ended. During that time, we had no co pays for appointments, Rx, glasses, dental. It also paid for one hour a week for a case manager each week, who took the girls out for a coke and talked to them.

Ksm

 

[A dad]

WAs it at a tolerable level before the eye tumor and chemo? It might be that this just makes any medicamentation usless especially at his young age.

 

[ksm]

I believe each state has this program... Here is what I coped for our state...


Services provided under the SED waiver are for children 4 to 18 years of age who experience serious emotional disturbance and who are at risk of inpatient psychiatric treatment. SED waiver services provide children with special intensive support so they may remain in their homes and communities. Parents and children are actively involved in planning for all services. The SED waiver is a federal Medicaid waiver program. Local Community Mental Health Centers provide services covered by the program. Children who meet eligibility requirements will receive a medical card and are eligible for Medicaid physical and behavioral health services.
SED Waiver Services Include:

• Wraparound Facilitator: A person who works with the family and their identified supports to set treatment goals and decide on services for the child and family.
• Parent Support and Training: Services designed to provide education, assistance, and other support to parents and families.
• Independent Living Skills Building: Staff supported development of the skills needed in order to live independently.
• Attendant Care: A staff person who helps the child with daily tasks.
• Professional Resource Family Care (Crisis Stabilization): Intensive support services provided to the child outside the home in a safe environment.
• Short Term Respite Care: A service given inside or outside the home to provide caregivers and the child a break.

 

[Second Time Around]

Our youngest also has bipolar disorder and some autistic traits. He was extremely difficult even as an infant and and became violent and angry as a toddler and stayed that way. At age six, he was incorrectly diagnosed with ADHD and put on stimulants, which made the violence much worse. We were able to get him on the SED waiver and had respite care, therapy, etc. Nothing helped for more than a day or two. He was dangerous.

When he was 8, he was placed in residential treatment for a year. They diagnosed him with anxiety and took him off stimulants. He was taken Risperdal and anti anxiety medications, but it didn't do anything for him. He was sent home after a year because he wasn't making any progress. He was home for a year, still violent and dangerous. We placed him in a different residential treatment facility when he was 10. A different doctor there finally diagnosed him correctly with bipolar disorder. That was before the DMDD diagnosis existed, which he probably would have had. This doctor placed him on a combination of THREE antipsychotic medications. He needs all three to function. After that he's been a different person. He's cheerful and friendly most of the time and seems more like a typical kid. He does still get frustrated easily and has outbursts when he yells, but that's a couple of times a month, not several times a day and no more violence. So, this is a long way of saying that the right combination of medications might be what he needs. Without that, all the therapy and the IEP did nothing. He wasn't able to think about his actions because he was so overwhelmed by his emotions.

 

[raraavis]

What happens when you take him to the park? Will he play with other children there? It's like you need to find a tiny island of positive behavior in him somewhere and build on it. Does he like swimming? One autistic kid that I worked with really enjoyed that and dancing. At 5, anything you can find that wears him out physically is a good thing. I don't know how much the chemotherapy is playing into his behavior, but I can bet it is. How is his pain level? Is that a factor?

What does he like to do at home? Does he have any special interests?

Unfortunately, he has no interests. He cannot keep himself occupied with anything.
He refuses to go to the park and when we manage to get him there he stays by himself. He never mingles with his classmates at recess or lunch, he is always away from everybody, unless he is attacking people out of the blue. He refuses to sit at the table with us. We eat in the breakfast area and he sits at the dining table by himself. He likes to be by himself.

This evening my heart broke into million pieces yet again. He was drawing a house and a pathway to the "sports store" (Academy) to buy "machine guns" and from there another path to his former "friends"s house to go "bust them and cut their legs with a chainsaw and put nails in their heads and then throw them in the trash". When recovered from the shock enough to speak, I asked him what he thought would happen next, what if somebody called the police. He said "policemen are the dumbest people in the world and I am stronger than them and I will hit them". No words...
I just don`t know how we will be able to keep him at home much longer. I will talk to his psychiatrist to maybe add another medication. He is off the charts dangerous.

 

[raraavis]

Our youngest also has bipolar disorder and some autistic traits. He was extremely difficult even as an infant and and became violent and angry as a toddler and stayed that way. At age six, he was incorrectly diagnosed with ADHD and put on stimulants, which made the violence much worse. We were able to get him on the SED waiver and had respite care, therapy, etc. Nothing helped for more than a day or two. He was dangerous.

When he was 8, he was placed in residential treatment for a year. They diagnosed him with anxiety and took him off stimulants. He was taken Risperdal and anti anxiety medications, but it didn't do anything for him. He was sent home after a year because he wasn't making any progress. He was home for a year, still violent and dangerous. We placed him in a different residential treatment facility when he was 10. A different doctor there finally diagnosed him correctly with bipolar disorder. That was before the DMDD diagnosis existed, which he probably would have had. This doctor placed him on a combination of THREE antipsychotic medications. He needs all three to function. After that he's been a different person. He's cheerful and friendly most of the time and seems more like a typical kid. He does still get frustrated easily and has outbursts when he yells, but that's a couple of times a month, not several times a day and no more violence. So, this is a long way of saying that the right combination of medications might be what he needs. Without that, all the therapy and the IEP did nothing. He wasn't able to think about his actions because he was so overwhelmed by his emotions.

Thank you so much for giving me hope. May I ask what medications is your son on? My son only takes Risperdal because he is so little, not even 6 yet, but I really think we need to add something else. After we initially put him on Risperdal he was somewhat manageable for a few months (still a terror at school with teachers and peers, but relatively ok at home) and then the eye tumor happened and his aggression escalated to a new level everywhere and with everybody.

 

[raraavis]

I believe each state has this program... Here is what I coped for our state...


Services provided under the SED waiver are for children 4 to 18 years of age who experience serious emotional disturbance and who are at risk of inpatient psychiatric treatment. SED waiver services provide children with special intensive support so they may remain in their homes and communities. Parents and children are actively involved in planning for all services. The SED waiver is a federal Medicaid waiver program. Local Community Mental Health Centers provide services covered by the program. Children who meet eligibility requirements will receive a medical card and are eligible for Medicaid physical and behavioral health services.
SED Waiver Services Include:

• Wraparound Facilitator: A person who works with the family and their identified supports to set treatment goals and decide on services for the child and family.
• Parent Support and Training: Services designed to provide education, assistance, and other support to parents and families.
• Independent Living Skills Building: Staff supported development of the skills needed in order to live independently.
• Attendant Care: A staff person who helps the child with daily tasks.
• Professional Resource Family Care (Crisis Stabilization): Intensive support services provided to the child outside the home in a safe environment.
• Short Term Respite Care: A service given inside or outside the home to provide caregivers and the child a break.

This is so helpful. I will definitely look into it. I really appreciate the information provided.