introduction and vent

A

Are we there yet?

Guest
Greetings! I have lurked on this forum for several months now. After yet another trying day today, I decided to register and post.

My difficult child is 9 and has always been a difficult child - rarely slept, cried consistently, didn't show much affection. The toddler years were filled with constant rages and meltdowns lasting 2-3 hours. difficult child went in streaks where he would be raging for several days at a time and then settle down. Whenever I thought I should seek professional help, he would stop and be a loveable, sweet, compassionate, creative child. I always thought he must just be going through a difficult development stage.

He was assessed at age 3 by the Early Childhood Diagnostic team due to his agression toward other kids in preschool. The team was stumped and could not come up with a diagnosis.

He is now going through a very difficult time the past few months. He is gifted cognitively; however, he struggles with the social, emotional aspects. We are currently seeing a Psychologist who sees Aspergers and attachment issues (due to a recent divorce). I am frustrated though as the psychiatric does not want to make an official diagnosis. He says he is not about the labels, he wants to focus on trying to change difficult child's behavior.

difficult child seems to be okay during school but then loses it in after school care. More than likely he will be expelled from his current program due to his defiance and aggression. Today he got so angry that he hit a child with a toy, tipped over a desk, threw books and papers, and spewed hateful things at the principal. He has been suspended several times for his aggressive behavior toward other kids. He doesn't have many friends and does not seem to relate well to other kids. It is concerning that he doesn't really show interest in trying to make any friends. Ugh!

I have seen the suggestions for a neuro psychiatric evaluation and I'll look into that. In the meantime, how do you handle a child who seems to be in crisis in yet can't be seen by a professional (current psychiatric or neuro psychiatric) for several weeks or months?

Thanks for letting me vent. After wiping away my tears, it is nice to find a place with other parents who understand.
 
T

TeDo

Guest
I am glad you finally "took the plunge" and joined us. You are right to get a neuropsychologist as soon as you can. Does your son have an IEP at school? If not, that is another thing I would go after. It needs to be a written request to the school for an evaluation for special education services. It needs to be sent registered mail with "Return Receipt Requested". If he does have an IEP, does it seem to be helping? If not, you need to request that the IEP team meet as soon as possible to revise the current IEP. I would also recommend that you find a different psychiatrist that is ok with labels that can help access services and so people, including you, know what you are dealing with.

I highly recommend the Ross Greene books "The Explosive Child" and "Lost at School". Both have wonderful strategies for home and school in dealing with difficult behaviors. You should also research Asperger's if that is what the psychiatrist is "suggesting". I am currently reading a book about it called "The Best Kind of Different" by Shonda Schilling and am learning a lot. It is an autism spectrum disorder.

I learned that I had to be a detective to figure out WHY my difficult child was having difficulties. I would ask him what happened and ask questions to get ALL the details from the very beginning of the episode from his point of view. Then I would get the school staff's version and figure out what the REAL problems were. It turned out that they were handling the smallest issues wrong and ended up escalating the problem then punishing him for the escalation. I identified some of the stressors/issues that caused the problems and have pushed for the school to handle them differently, which have worked for the most part. They had to see it to believe it. Have you tried this?

Many others will be along to give their experienced advice. Welcome to the board.
 

Marguerite

Active Member
I am frustrated though as the psychiatric does not want to make an official diagnosis. He says he is not about the labels, he wants to focus on trying to change difficult child's behavior

I really want to smack some health professionals. If this is Asperger's, then you NEED the label so you know exactly how to help this child. You can't change a child's behaviour by wishing it so. Similarly, the aggressive behaviour you describe is often the result of extreme frustration and it requires a different handling. If this is instead simply a wilful child, then punishment would make more sense. But suspension or expulsion is not warranted, if tis is a child who needs help and is not getting it.

You've been lurking, you say, so you know we often recommend books like 'The Explosive Child" by Ross Greene.

In my experience, therapy can help a lot. But the best therapy in our experience has been what we put in place ourselves at home. You can't have the therapist live in, but you can become the therapist in residence while you wait for the professionals to get their act together. Use the professionals as a back-up, but don't rely on them to fix things. They don't know your child as well as you do. Have faith in your own capability, but use what resources you can get hold of. Do not allow your child to be victimised because of behaviour he cannot control, but again, do not allow that behaviour to continue. For a while you may need to have a policy of interference being run (deflect, remove) until he learns some measure of self control and management of his frustration. Unstructured activity is often a problem for these kids. So is bullying. It needs careful watching and, until he can cope with it, some measure of insulation from it.

Welcome to the site (officially) and give us more specifics.

Marg
 

Andy

Active Member
Welcome - Yes, many here will understand what you are going through. Are you on a waiting list or have an appointment to see a psychologist or psychiatrist? Is there a children's psychiatric hospital nearby that you can have as an option during the midst of a meltdown crisis?

When we were looking for help for our difficult child, the psychologist told us that there were three ways to get into a psychiatric hospital. 1. A referral from a doctor 2. A visit to an ER at the height of the crisis (doctor there can refer) 3. Contacting the hospital directly to ask for an assessment.

We were one block away from the children's psychiatric hospital when we decided that difficult child needed more help than once a week therapy so I just walked in and asked for an appointment. It was just before lunch so I thought they would have me come back later in the day. However, difficult child threw up in the reception area and we were ushered to a back office ASAP.

psychiatric hospitals don't just admit because you walk in the door. They will do an assessment to determine your level of need. So, if the professionals don't think he needs hospitalization (they will not get payment from insurance if there is no need), than you can take him home.

difficult child told me he could not handle it anymore. He was deep into self-harm thoughts and was terrified.

If your difficult child is raging a lot each day or week, you can keep this as an option. You can ask his regular doctor for a referral to make it easier but do know that you can do this on your own also without a referral.

psychiatric hospitals are set up to stablize a person. It is not an answer to the problems but they may help get you a follow up appointment with a psychologist or psychiatrist quicker then the time line you are working with now. While stablizing, they can diagnose and introduce medications. Something to work with when discharged.
 

timer lady

Queen of Hearts
Hi & welcome. I get so tired of the word "labels". It's a medical diagnosis for goodness sake. The word label wouldn't come into play if it was cancer, epilepsy or diabetes yet if it's an cognitive, psychiatric or emotional disorder it's a "label".

Sorry for the rant, I've heard this so many times over the years. Marg is right ~ you need said "label" if you want to get the correct treatment for your difficult child. Ross Green's book is a wonderful resource. There are also the Love & Logic books (that worked better here for numerous reasons). A neuropsychologist is a good first step.

In the meantime, feel free to come here to vent, commiserate, & share happy times. While our difficult children have many different diagnosis's & behaviors, the parents of said difficult children have tremendous survival skills no matter the diagnosis. There's a great deal of wisdom here.
 

BusynMember

Well-Known Member
Ditto with those who are tired of professionals who don't like labels. How can the child get help without knowing what is wrong? Aspergers is not just treated with therapy. It is a MEDICAL neurological disorder...the kid's brains are wired differently.

Often they act like they have no empathy as they can not express it and have a hard time understanding other people. It does NOT mean they have attachment disorder. in my opinion I'd lose this therapist and go to a neuropsychologist for a diagnosis first off. Then you can go from there. I have no idea how this therapist can help you. At any rate Neuropsychs do a lot of testing and can diagnose kids and regular therapists legally can not diagnose and usually don't test at all.

Aspergers kids are often very gifted in school, but are clueless about life and people. We can't diagnose here, but it sure sounds like Aspergers. If he has that, he will need spescial interventions, not talk therapy. Often they have trouble with talk therapy because they don't relate well to other people. My own son has improved at least 80% through the years with a lot of help.
If he has Aspergers telling hm how you feel or time outs or other regular parenting tips probably won't do any good. You need to learn about Aspergers and work with somebody who understands the disorder and can help you help him. Take care :)
 

hexemaus2

Old hand
Welcome to the boards (officially.)

Your difficult child sounds a lot like mine back before we got our "label." We've had several over the years. I don't put too much stock in them, but at least it narrows the playing field down enough to start trying focused efforts to fix the problems. Not to mention, those "labels" meant the school HAD to work with us to schedule IEP meetings, work on alternative ideas to help him get through the day intact, etc. It also helped with daycare workers...or I should say, the daycare owners. I met with them often to discuss difficult child's latest diagnosis, treatment plans, etc. They stepped in on our behalf with the folks in charge of him in the afternoons. In fact, one daycare even hired her own adult son to work in the afternoons so there would be a "guy" there to act as difficult child's buddy if he needed help with a particularly frustrating situation. (Her son and difficult child seemed to click moreso than anyone else there. He could often diffuse difficult child better than anyone...even me sometimes.)

In terms of dealing with his aggression, I can share what we found worked with my difficult child. Although, it certainly was no overnight success. difficult child 2 took years to get his aggressive/violent behaviors under control. I often wonder now if I had known what I know now back then, could we have intervened sooner for better results? But that's really neither here nor there now.

My first suggestion would be to document his day to day activities, general mood & demeanor, and any outbursts. They often recommend mood journals for people with mood disorders, but I found them very useful with difficult child 2. Not only did it help me pick up on patterns in his behaviors which later helped determine triggers, but it also helped me with psychiatrists, tdocs, and other professionals. I had a record of when, how often, and under what circumstances he displayed aggressive behaviors. You may find yourself walking around with a notebook all day, jotting notes every hour or so, but you'd be surprised what you'll find in terms of things you never noticed before. You may not find definitive triggers, but you'll eventually start to see a pattern...even if its just things like waking up too early or too late leads to rougher days than normal. It was the mood journaling process that helped us see that difficult child 2's aggression always got worse in the colder months as his clothing became heavier and scratchier. (He has sensory dysfunction, a common comorbid issue with autism spectrum kids.)

Redirection BEFORE difficult child 2 got too frustrated was also a key to minimizing his outbursts. Sometimes that meant HOURS before a meltdown actually happened. In our case, providing him a safe, quiet, low sensory input environment when his frustration tolerance hit a certain level was the best bet. That meant he would come in my office and draw, read, play his DS, whatever...so long as it was away from other people, a lot of noise, and a lot of activity. We had to prepare ahead of time for anything that involved him being around a lot of people. My Mom, for example, would set up her craft room as difficult child 2's safe haven when we'd go home for the holidays. He didn't have to say anything to anyone if he started getting overwhelmed. He could just leave the room...even in mid sentence or when an adult was talking to him, if need be...and just go chill in his quiet place.

Like I said, redirection sometimes had to start hours before he even got close to meltdown mode. If I waited until I realized a meltdown was coming soon, it was usually already too late. I had to back up even further and look for signs of mild frustration and start redirecting/guiding then in order to avoid meltdowns later in the day. It was almost like difficult child 2 would absorb so much frustration until he just burst like an overfilled balloon. He didn't understand how to remove himself from a situation to avoid frustration, even at moderate levels. It would just keep building and building all day until he exploded.

If you don't already have an IEP in place for him at school, talk to the administrators...or better yet, the Special Education teachers directly. You can ask for a meeting with the Special Education department and school administrators, even without an IEP in place. I did that with difficult child 2 before I pulled him out of public school. He had no IEP of any kind at the time. However, we were in the process of having him evaluated privately. The school didn't see a need for an IEP for academics or behavior because there were no problems at school, but they did work with me to develope a plan IN CASE he needed an IEP. In short, they kept him under observation under the understanding that information they provided would help the docs understand the differences in his behaviors at school versus at home. I forget now the term they used for it, but basically it was a "pending" kind of deal. They were preparing for a possible IEP, pending the outcome of doctor recommendations. It helped open the doors of communication, gave the school a head's up, and did get him some minor modifications during the "pending" phase of things. (For example, he was able to leave class 5 minutes before the bell rang so he could get to his next class without crowds...which helped with his frustration levels by the time he got home from school.) It also meant the school was formally notified of difficult child's current diagnosis, which meant if something DID happen at school in terms of violent outburts, they couldn't just suspend him without taking his diagnosis into consideration - because he was in the evaluation process to determine "eligibility" for an IEP. (It helped that the doctor gave us a letter to give the school, with recommendations for temporary modifications based on information gathered to date. It was a letter I typed up, then gave to the psychiatrist for his approval and signature...otherwise he probably would have never gotten around to doing it.)

Like many others have mentioned, normal parenting techniques are not very effective for difficult children like ours. For my difficult child 2, punishment for violent or aggressive outbursts was (in his mind) telling him he was a bad kid, which just added to his anxiety and frustration. We had to take a different, less psyche-damaging approach with him. We had to treat his behaviors much like symptoms of a physical illness. You wouldn't punish a diabetic child for having high blood sugar. You wouldn't punish a child with a bladder condition for wetting the bed. I couldn't "punish" difficult child 2 for violent outbursts he was not equipped to control yet.

Now, don't misunderstand that. That does not mean there were no consequences for his aggression. It just meant my approach had to change. Just like a parent of a diabetic child has to control their diet until they are old enough to understand their disease and manage it themselves, I had to control difficult child 2's environment and stimuli as much as possible until he could learn to cope with things out of his control. He was responsible for certain aspects of his behaviors (like communicating when he felt overwhelmed, asking for help when he got confused, etc.) and consequences came when he did not live up to his responsibilities. However, we had to control his environment enough to give him the time he needed to learn how to handle more responsibility for his behaviors. I hope that makes sense. In short, we controlled his environment enough to help him learn to deal with the real world in smaller, bite-sized chunks that he could digest and cope with at his own pace.

For us, that meant pulling him out of public school and home schooling him and his siblings. The constant shifting gears from one class to another, then school to daycare, then transitioning back to home was just more than he could manage on his own. To succeed in that environment, we would have had to have a one-to-one aid from the time he woke up until the time he went to bed, including transporting him to and from school, daycare, and home, while at school, while at daycare...it just wasn't practical. He simply could not handle all those transitions every day, on top of so many people, so much noise, and so much activity around him.

We also had him evaluated by an occupational therapist. She did more for him than any talk therapist, behavior mod therapist, psychiatrist, or any other professional. Our psychiatrist gave us a referral after a neuro evaluation, but I could have gotten one from our regular pediatrician as well. Our Occupational Therapist (OT) helped him learn to cope with his sensory problems, balance issues, and a host of other physical/tactile issues that further contributed to his frustration levels. We used weighted vests to give him more tactile stimuli and make him more aware of where he was in space. On the recommendation of the Occupational Therapist (OT), I bought clothes, bedding, socks, and anything else that came in contact with his skin based on what he could tolerate in terms of texture. In terms of working with her, he did a lot of balance/coordination work to increase his balance AND give him more physical stimuli. She even had him participate in some group Occupational Therapist (OT) work to help provide social skills training. I would have never thought that his need for more physical stimuli would be a factor in his aggressive behaviors. Even now, at 17, he'll tell you sometimes he picks fights with difficult child 3, hoping to get a physical response of some sort. (Although now the "fights" are more like normal brother testosterone-induced rough housing/wrestling than actual "fights.")

If I learned nothing else dealing with difficult child 2's aggression, I learned that a head on approach to correcting his behaviors just did not work for us. We had to find back doors. We had to play detective and look for things that contributed to the behaviors and emotions behind them...sometimes things I would have never thought could be a contributing factor turned out to have a HUGE impact (like the need for physical stimuli.)

Don't rule ANYTHING out. You know your difficult child better than anyone else on the planet - trust yourself and what you know to be true about him. Listen to the experts, but don't take their word for gospel. Think about what YOU think makes sense for helping difficult child overcome/diffuse/work around his tendancy towards aggression. Learn to gauge his emotional temperature long before he gets to the point of acting out aggressively. Not all of it will make sense. You won't find all, or even a majority of his triggers. Sometimes the meltdowns come and you have absolutely no clue, no hint that it's coming. But if you can find even one trigger, eliminate even ONE thing that contributes to meltdowns, that's one less meltdown you have to endure. It's one less log thrown on the fire. Over time, you'll find more triggers. Over time, he'll gain a little maturity. Over time, the professionals will give you ideas here or there that work, even if just a little. It won't happen overnight. You won't just wake up one day and be free of them. But you can chip away at them a little at a time until one day you realize it's been days, or weeks, or months without a meltdown.

On a funny note, I once presented the challenge to difficult child 2 (when he was 11 or 12) that if he could go an entire month without a single violent outburst, I would give him a $30 shopping spree at GameStop. That challenge sat for over a year, starting again and again, every month. When he asked, I told him that for every month he had no meltdowns, he'd earn that $30 shopping spree. He always tried, but never made it to a full month. Eventually, we moved on to other things. I had lost hope that he'd ever get through a whole month. That challenge gathered dust on a shelf somewhere, completely forgotten for years. Last year, on Christmas Day, when difficult child 3 and I pointed out to him that he had made an ENTIRE YEAR without a meltdown, difficult child 2 (now 16, at the time) responded with informing me I owed him $360 in GameStop money - can we go now? lol. Every month, he jokingly tells me his GameStop shopping balance as of the end of the month. This Christmas, we'll be up to $720. Guess what I'm giving him for Christmas? Yup. $720 worth of GameStop gift cards. He's earned every cent.
 
C

Castle Queen

Guest
Hi- just wanted to add my welcome from a fellow new member recently out of lurkdom. I haven't got enough knowledge yet under my belt to qualify to give you any advice, but I can definitely relate to many parts of your post! Especially where your therapist was reluctant to give your son a label and wanted to treat the symptoms! I got the initial label for mine but it seemed no one ever wanted to look any deeper. I was denied a referral to a neuropsychologist for months.

My son has been expelled from several daycares too. Unfortunately they aren't as willing to work with you as the schools (who have a legal obligation) What helped a little was I always told the staff that I wanted copies of incident reports to discuss with the therapist. Sometimes we had time to discuss them, sometimes not- but the daycare at least knew I was taking it seriously and working as a partner WITH them. Another time we had the therapist meet with the director of the daycare to set up a behavior plan. Again, just the idea we were trying something, even if it didn't solve all the problems, at least it was progress.

Again, welcome. These ladies are great and have already helped me a ton. Hopefully I'll be able to give back someday.
 
S

ShanDiann

Guest
Welcome!! I am new here myself and found this board to be a wealth of information. My difficult child also tends to have violent outburst. We are currently working with a psychiatrist who thinks he may be somewhere on the spectrum. His outburst tend to happen when something doesn't go as planned.
One thing that has helped has been working with psychiatrist to find the true cause of the outburst. Why did he hit the other kid with the toy? Could it be the after school program is less structured than the school day? difficult child's typically do better in a structured environment.
My other concern would be waiting weeks to see your psychiatric. If difficult child is already an established patient he should be available to you when times of crisis arrive. When difficult child has been suspended we have always been seen within 2 days to debrief. If your not happy with the doctor, it may be time for a change. Remember you are paying them.
Again welcome!!
 
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