New to the group

[threelittles]

Hello everyone,
I just found this group tonight and have been reading some. I feel relieved and overwhelmed at the same time! Also, I'm sure I am just missing this and feel lame, but where is the key for all the abbreviations?? I don't know what difficult child means, or easy child, or many others.
Here is part of our story. My oldest ds, 6 years old, was born with a birth defect of his esophagus and spent much of his first year in intensive care, on a ventilator, feeding tube, multiple surgeries, and so much more to the story. He came home and for the first three years we worked very hard at getting him healthy and whole, eating by mouth, able to be in public, etc. His g-tube came out at age 3. Thinking the worst was behind us and relative good health was restored, we then entered into the world of finding out there were speech and behavior disorders. We began speech therapy as a toddler and at 3, I brought his behavior concerns up to our pediatrician. He recommended a full psychiatric evaluation by a team of psychologists at the major university hospital where our son had stayed. This came back that he was normal, just developmentally delayed from all of his medical issues. Almost two years later, we went for his 4th hearing test and found out that he had a profound hearing loss in both ears. He had been gradually losing his hearing all this time related to his time in ICU. We didn't realize that it was a gradual loss until recently, piecing everything together. So that explained a lot of why speech progress was so slow and a lot of the behavior problems. Now we are dealing with the world of hearing impaired, but there are still a lot of behavior issues. I didn't agree with the findings of our previous psch evaluation, because things were not going well at home. So our (new since we had moved) pediatrician recommended a pediatric neurologist who we saw and who diagnosed our son with ADHD, emphasis on high impulsivity with ODD component.
That is where we are now. I do not know what to do with all of the information, and I am struggling. He doesn't just fit into the ADHD/ODD mold because he also has an extensive medical history and health problems, as well as hearing impaired. Not to mention schooling issues. I feel like I need to get all of his care coordinated in one place and I am always piecing it all together. I am pretty discouraged as a mom right now because I feel like I am constantly behind in how we can best help him. There is so much to learn in every area that he struggles in, but I don't have a lot of free time (I also have a barely three year old son, and a one year old daughter).
I have read The Explosive Child and it is very helpful, and also From Defiance to Cooperation, also great. I am having trouble being consistent, and I know that is critical to his success. I am a very sensitive, very hard on myself, mother who fiercely loves my children and desperately wants the best for them (as we all do).
Anyway, my struggle is that I do not want to medicate and I am not sure what the next step I should take as far as professional help. Is it a developmental pediatrician, or a neuro-psychologist? I also am tired of our whole lives being about pursuing treatment for his problems. I mean, I want as normal a family life as possible, with least invasive as possible (but effective in meeting his needs) help. I have been on a wait list for a neuro-psychologist for months, and spoke to another who told me that basically if I didn't want to medicate, then I didn't need to see her. Is there anyone else who is treating without medication? Through family/parenting coping strategies and environmental modification?
My other issue is school, because he is about to start first grade and this will be the first year he is in a mainstream class (rather than hearing impaired). There is nothing in his IEP related to ADHD/ODD yet either, because I was hesitant about sticking another label on him... Help me please.

 

[BusynMember]

A lot of kids don't use medication. After overmedicating my own child, who also had a very unstable birth history (his birthmother had used drugs when he was in utero and then he had open heart surgery), we got a slew of wrong diagnosis. All the doctors wanted to fix him with medications, although I thought I saw autism in him. But who am I, right? We did get him school interventions--THAT you can do. It helped him tremendously. In the meantime, he ended up taking a ton of medication for a laundry list of disorders that to me said, "We don't know what's wrong."
Finally, we got a neuropsychologist exam and found he was indeed on the autism spectrum, although high functioning. We took him off the medications, continued his interventions and he's doing great and medication-free. He's not even on alternatives. He doesn't NEED any sort of medication--he needed Autism Spectrum Disorders (ASD) intervention.
I don't blame you for being careful about the medications. I wish I had been more careful. I'm on medications myself and, although the right medications can greatly help for psychiatric issues, they can also make kids much worse. You may want to go to the "natural" site. Make sure you get him into school early--the helps a lot. There is early education for kids with special needs.
I wish you luck!

 

[LittleDudesMom]

Welcome threelittles! I'm so glad you found your way here! I must tell you that you seem to have been given a lot of good advice and intervention from the docs who have treated and diagnosis'd your son. Before I go further with some thoughts, I do have some questions about your son. What are the behaviors that particularly worry you about your son? Does he harm or overly bother his siblings? Is he defiant at every turn? Is he particularly clingy to either you or your husband? Or is he the opposite, not appearing to bond with anyone? How about at school, does he have little buddies? Is he constantly in trouble? How is his academic development, is he pretty much in line with the majority of his class? I know he's young, but an experienced k teacher could tell if he is meeting benchmarks.

Ok, now that all the questions are out of the way, on to some thoughts!

You have your hands full. Your son, by your words, is fortunate to have a mother that is "turning every stone" as you will. You have three young children and focusing on just one can be stressful for the whole family. Normal is not a word we use much around here (oh, up on the top of the board you will see the words "FAQS" - click on that and you will find keys to navigating the site, etc.). Typical is more the word we prefer. What is normal? The way a family is portrayed on TV? A Normal Rockwell painting? What we see from the neighbors down the street (even though we don't know what happens when their front door closes)?

Listen, all of us with a difficult child (gift from god - how we describe our challenging children) go through a kind of mourning period. We mourn for the loss of a dream. We thought having this child would be a loving, fufilling experience. None of us were prepared for telephone calls from school, IEP meetings, behavior struggles, doctor's appointments, medication management, etc......

But it is what it is. You will come to accept what is your life and manage your son's illness and your other children. Your family is defined, not as measured by your neighbor's yardstick, but the love and committment of it's members.

In regards to medications. We do have a Natural Treatment board here on cd.com. You may find some ideas and information there.

It's understandable that you are hesitant to begin medications. I was also in the same place when my son was diagnosis'd with adhd/highly impulsive/combined type. I refused to medicate him for a little over a year. I tried behavior mod and changing his diet - those things did not work for us. So, I agreed to try a stimulant. For my son, it made all the difference in the world. From the very first day.....even his handwriting improved! He was less impulsive and much more attentive.

I'm not going to tell you that medications are the be all end all. Behavior mod, a great therapist, understanding teachers and administrators, a great IEP, hard work on his part - all of this together made a difference. It didn't all happen overnight - it was a process.

In regards to school, check out our Special Education board. I wouldn't suggest not getting your son help to navigate first first grade because you fear he will be labled. The definition of qualifying for accoms and mods according to the law is something that impedes/interferes with his ability to learn. I think you are there. Early intervention in school is the key. You don't want both him and his teachers to become frustrated; you don't want him labled a trouble-maker, you don't want him to come to hate school or be judged by his peers.

Putting supports in place at school are vital to his success.

Well, I didn't intend to write this long a post, but......

I'm glad you are here!

Sharon

 

[slsh]

Hi Threelittles - so glad you found us!!

Before I respond, I just want to warn you that we all bring our personal biases, based on our own experiences, to the board. None of us have "the" universal right answer but we do have an amazing range of opinions, experiences, and suggestions for things that have worked. Please take what you can use and skip the rest. We're also a great place for a good old fashion vent, and a shoulder when you need it.

So - my bias, based on having had a kiddo who had a rocky NICU course and severe developmental disabilities, would be to stick with a developmental pediatrician right now and also see if you can find a therapist (therapist) who can help you work on behavior management. I think it's perfectly reasonable to take this approach for now, especially given his history and his young age.

I understand wanting to keep his care centralized. I'm not sure it can always be done. Aside from the different specialists involved and trying to get them all on the same page, I also found as my oldest grew that my tolerance for "those" docs decreased rapidly (you know, the ones who pat your head and say "don't worry", or the ones who are completely unconcerned about an issue that we *know* is important). I ended up with a geographically and institutionally diverse team. But it was a *team*, and to me that is what mattered most.

I also really understand how it feels like everything is focused on treatment, appointments, etc., and how it doesn't feel like a normal family life. I think there were about 10 years there where we did Occupational Therapist (OT)/PT/ST several times a week for Boo, therapy 2 times a week for middle son, then you throw in Boo's frequent major seizures (i.e. ER trip) and thank you's frequent major rages (i.e. ER trip and usually hospitalization) - life felt like one very long waiting room. I especially felt horrible for the younger 2, because I expected them at very young ages to be able to sit for hours in an ER/doctor office with me and behave. To their credit, they did. It was a grossly abnormal young childhood but - we had no choice. As the younger 2 kids got older, husband and I finally clued in on how not normal our lives were and we started making a really concerted effort to have some "normal" days in there as well, for all the kids. We found a balance, as much as the needs of our 2 oldest would allow. I can tell you that my younger 2 kids don't seem to be too horribly traumatized by it all, though they do have some "interesting" stories about their childhood so far, LOL. They *are* definitely much more empathetic and compassionate than your average 10- and 13-year-old. I also have tried to emphasize to them that they are far better equipped to handle anything life throws at them because they have been growing up in such a different kind of family. Trying to keep a positive spin on things for them.

Consistency... LOL, sorry, but I have to chuckle because that was my undoing for years. I never realized how *hard* it is - but it sounds like you are on the right track. At least you recognize how important it is and that you need to work on it. Practice, practice, practice. I can tell you that I'm a whole lot more consistent now than I was 10 years ago.

How do you feel about him being in a mainstream class? I personally am a very staunch believer in full inclusion regardless of ability (for many reasons but I'll stay off my soapbox this morning, LOL) - something I've been completely unsuccessful in obtaining for my oldest. I do believe in self-contained classrooms for kids with significant behavior problems but only after everything possible has been done to maintain and support them in the mainstream setting. Just my opinion, but I would not be concerned about adding "labels" at this point - I think your priority is insuring he has a positive adjustment to a mainstream class and that the supports are there for him to succeed.

Whew - guess the coffee kicked in a little *too* well this morning, LOL! Anyway - welcome and so glad you found us!!

 

[bran155]

Hello and welcome. I don't really feel confident enough to give you much advise as I am still struggling for answers myself after many years of this chaotic life. I will say that you should always trust your own instincts, no one knows your child as well as you do. Don't let the "professionals" intimidate you and push for what you need until you get it.

I am so sorry you have so much on your plate, I can only imagine how exhausted you must be. Your son sounds like a survivor to me, that is one tough little guy. God bless him.

You have found a wonderful place for comfort. The people here are so amazing, full of knowledge and compassion. You are among friends. Hang in there and God bless.

 

[DazedandConfused]

Welcome Threelittles!

Your plate is certainly piled high. However, you have probably found, in my opinion, the single best resource, on your journey of having to raise a difficult child. So, today is a good day!

Even when dealing with the professionals, unless there is tangible medical evidence, it's all their opinion. At this point, and after reading your post, your bucket is overflowing with opinions from them. As I have told, and continue to tell, the professionals I have to consult with, "I'm the computer. You are the data. Once the information is input into my system, I make the decision". I have learned long ago, and the hard way, after my daughter was nearly died due to a MD dismissing my concerns about my 1 year old daughter, they have their own agendas, weaknesses, and frankly, incompetency (my daughter, a few weeks later, unbeknown to me, was near death with leukemia).However, you certainly have had to deal with a lot of professionals, so you don't come into this difficult child game unarmed.

You have great responses so far. So here are a few of my opinions:

Neuropsychologist-I would respectfully disagree that unless you heading in the direction of medication don't bother with a neuropsychologist evaluation. It is not their function to recommend, nor can they prescribe, medication. I found the one I had done on both of my difficult children very helpful. However, if you have one done while your difficult child is so young, it may not be the last time you may choose to have one. Think of it as another tool for you to, hopefully, understand your difficult child and to help him. Believe me, as in my Son's case when he had one done last year, it didn't answer all the questions, but I did gain more insight and had more clarification on how I was going to proceed with services for him.

Daughter had one when she was three because I was concerned about the effect the lumbar punctures, AKA spinal taps, with methotrexate, on her brain development. She also had a speech delay and was very hyperactive and tantrum prone. In those days, I was trying to get as much, and as many, services as I could for her. At one point, I was driving her to speech therapy three times a week-two through the hospital, and one through the school district.

Centralization of care: I so understand your desire for this! It may not be possible. Especially, as your difficult child gets older. Though I don't have as many appointments as I used to, many of the professionals I use, and have used in the past, are far flung all over the place. Be open, and flexible, to seeking the best treatment that may be outside where you prefer. You, most likely, will be the center.

Medication: This area is the most difficult, in my opinion. I would have never imagined that I would be medicating my children. Though, daughter is not on any medications now mostly through her choice. The first time someone, a school speech therapist, off handedly during an evaluation, mentioned that my son might need medication because of his hyperactivity. I was outraged. In fact, I nearly knocked the table over that was between us, when I indignantly stood up and declared, "My child will never be put on medication! How dare you!"

That reaction came from a Mother that had was terrified that, once again, she had to deal with a child, which had issues. After daughter, her chemo, and taking enough medication to last ten people ten lifetimes, I wasn't too exactly open to that idea.

My bottom line is this-if you can help difficult child to have a productive and happy life without medication, I think that is wonderful. I know that many parents here I had success with more "natural" type treatments. I applaud them. Some haven't had success.

For me, I finally did get to the point where I felt like it was my last resort. All the books, all the techniques I had learned, though helpful, my home was still an out of control war zone and getting worse with my daughter hitting 13. Honestly, the first medications that both of them were prescribed (at different times, mind you) were not helpful. However, I did find one psychiatrist, who really listened and worked with me. My daughter was put on a mood stabilizer and boy did it ever help. Eventually, it didn't work so well, but it opened the door to allow hope into my life, and hers, again.

Son, who is the most anxiety angst kid ever, did not respond to anything at first. Though diagnosed with ADHD, and he is very hyperactive and impulsive, none of the traditional ADHD medications helped. In fact, they made his severe irritability completely unbearable! He was horrible to be around. Finally, the psychiatrist prescribed Risperdal. I have to tell you, it literally changed our family. We could finally go out and have a meal without having to leave because Son would have a meltdown, or constantly pick fights with his sister. Son (as I refer to him here) finally was able to have a few friends because before barely anyone was able to stand to be around him.

Now, I am not, by any stretch of the imagination, recommending medication. It has very real risks and very real side effects. And, it isn't a panacea. It's another option to consider, if and when, you ever think it's necessary.

Anyway, I've blathered on long enough.

 

[busywend]

Just dropped in to say WELCOME!!!

I look forward to getting to know you better.

 

[TerryJ2]

Hi, welcome!
You've already gotten some great advice.
I agree that it's hard to find every resource in one place and it may not happen, so try not to be too frustrated as you go through the process.
I want to add that you sound like a great mom. You're looking for resources and help for your son and your family.
It's hard to say whether his ODD is a result of his earlier life medication issues. You may never know. But you can develop therapies to deal with-it.
I understand completely about not wanting to medicate your child. We went through the same thing. I almost lost my sanity, but at least we didn't overmedicate. (How's that for a rationalization? )
Take a deep breath and try to relax. It's hard. In fact, sometimes nearly impossible.

 

[threelittles]

Thanks for the encouragement. I needed that.

 

[threelittles]

Hi!
I so appreciate your very thoughtful reply. It is full of food for thought for me and I will read it a few more times. Thanks.

 

[threelittles]

Oh, I also love your approach for dealing with medical professionals. That is a very good way to describe your role. I am getting to the point of hating the doctor's visits because I have not developed thick enough skin yet (I think the term here was rhino skin??). I still get stressed at having to defend my point of view when it differs, although I will never be pressured into anything I don't agree with, I just hate conflict. So all this, IEP's too, is such great fun.

 

[threelittles]

thanks for your response. I always feel like if I could just be more consistent, then it would solve all the problems. I know it helps a lot, and when I can't I just feel worse. Good to know that someone else also has struggled in this area, but made a lot of progress. As for mainstream, I have mixed feelings. I also believe in inclusion, but I also want him to get the help he needs to succeed in the future. Because the early years are the foundation for all future learning, I wanted him to start out getting intense help where he needs it with the hopes of mainstreaming at a later date and being fully competent to handle it. We ended up having to move, away from the program that I loved for him, and the self-contained class here isn't meeting his needs (that is what he did last year). So mainstream is the only option, I feel, at this point. He does better in a small class environment where people "get" him. He will have a full time transliterator/facilitator and resource help as needed, plus speech therapy, so really all the help he could possibly have. We will just have to see how it goes. I can see, reading your description, that you have far greater challenges than I have. You have been through it. Thanks for your warm welcome!

 

[threelittles]

LittleDudesMom-yes, I have been mourning many losses with my son, and this is the latest, I guess. Thanks for the links to the other boards. I will try to answer your questions (again, since they got deleted last night before I could post! grrrr!):
What are the behaviors that particularly worry you about your son?
~defiance
~very impulsive
~tantrums
~inflexibility
~demanding
~defiant
~hurting others
~not seeming to be aware of give and take in relationships, lacking understanding of social cues
~random yelling out (sounds, not words)
~constant motion
~anxiety
~getting stuck on one idea, trouble letting some things go
~has a lot of trouble going to bed
~can be "too much". too wild, even if he is playing a game that is rowdy, he will get a little too rough, a little too loud, a little too rowdy.

Does he harm or overly bother his siblings?
Yes, he does. He is getting better in his relationship with his brother, meaning that they have fun and enjoy each other and play together, but he does still hurt him (scratch, hit, push, grab) often. Also does things to make him mad, doesn't stop when little one says stop, bossy, takes over everything and has to be his way most of the time. He has always been very jealous of little one. But the jealousy is getting better. With his baby sister (15 months), he adores her but he can be too loud, too wild, too rough, with her.

Is he defiant at every turn?
Sometimes. I can tell right away in the morning if it is going to be a bad day. Often, he's not defiant at every turn but when something sets him off. Other times, it is constant. But there are periods of time when he's not at all. It is like a switch flips and we may have a week or two or even three when he is much more calm and settled and in control of himself. I cannot for the life of me figure out what "flips the switch". Or what flips it back the other way, either. He has been MUCH better this summer at home than during the school year. During the school year we had times when he was just falling apart (at home) and tantruming, raging, hitting, destructive... I couldn't always get out of him what was going on at school. He also has this attitude of, he doesn't have to listen to anybody in authority, and wants to do whatever HE wants, he is in charge.

Is he particularly clingy to either you or your husband?
No.

Or is he the opposite, not appearing to bond with anyone?
No. He is affectionate and loving.

How about at school, does he have little buddies?
Yes, he does. He does friends, but his friends are almost all hearing impaired. He has trouble more trouble with hearing kids.

Is he constantly in trouble?
Not constantly. He has good days and bad at school. He has done more extreme things like take manipulatives from the classroom home in his pocket, scribble on a mural that the class made, bother other kids, hit, and scratch (even on the face). He did have a lot of positive experiences at school too. If he has a bad fit with a teacher, forget it. He will become a big behavior problem. But if he feels loved and secure and there is a lot of structure and consistency, he thrives. He is a leader with the other kids (but not hearing kids).

How is his academic development, is he pretty much in line with the majority of his class? I know he's young, but an experienced k teacher could tell if he is meeting benchmarks.
Yes, he is pretty close to on track. He never actually had a regular kindergarten year last year. His class was hearing impaired preschool and K, but not necessarily following K curriculum. He was mainstreamed for parts of his day. His trouble with language makes it hard.

Wow, thanks for all of that. I just wrote a small novel.

 

[threelittles]

Hi, and thanks! I love the, "but who am I?" line. My ds is already 6 and heading into first grade. He has been receiving services through the school district since he turned 3, though.