We need help

[Dara]

HI. I am new to this board. I have an almost 3 year old son. He has been in ABA therapy since he was a year. They have helped on many levels like they taght him how to stand, walk, eat, and many other things. Sammy has many developmental delays including speech. These are all being adressed. However the big problem is his behavior. He is so violent and is constantly tantruming and screaming. Half of the time it is absolutly random. The worst of it is with me. I cant do anything with him. Every aspect of life is a battle. He is good with Dad when I am not around. He is an angel for everyone else. I am so at a loss. The neurologist cant figure it out, the therapist have no idea what to do. They told us on monday that they have no idea how to help us. THey said in all of their years of working with children, they have never seen anything quite like this. We need help. I feel like such a failure. I have to sit on the side lines and watch everyone else have fun with my child. I cant even take him to the park. HE goes crazy. I literally get beaten. My poor husband has to have surgery that wiil have him out of commision for almost 6 months. I had to quit my job, i have no friends. I cant talk to anyone about it because noone understands.
I am sorry to babble on, i just appreciate the support and ideas.
Thank you!

Dara 33 Houston Tx stay at home mom
Brian 31 commercial real estate
Sammy almost 3

 

[momof4insc]

Sounds like my son. He has conduct disorder. I understand how you feel and can sympathize with you. My son rarely goes out on play dates due to the fact that I have no idea how things are going to go. I cant take him to the store, out to eat, shopping, ect cause he will kick me, push me, hit me, and do anything to cause me harm. He has gotten a little bit better with therapy and medications, but there are some underlying issues that we are trying to figure out. It pains me when my neighbor can take him to walmart for 3 hours and tell me what an "angel" he was. Yeah right!!! I just want to cry and ask him why he cant be like that with me. Why am I so different?

Read up on cd, even though they say it is diagnosed in older children, I had him tested anyway for it. Glad I did!!

Good Luck and remember, Patience is the key!

 

[BusynMember]

Has he been diagnosed with autism? It sounds like he has by the interventions. If so, is he in "at risk" treatments? My son has Pervasive Developmental Disorder (PDD)-not otherwise specified and he started therapies before age three. They didn't have ABA back then, but he was in speech (he's 13 now and talks great). Has he ever seen a developmental pediatrician? I would start there. Doesn't sound like the Neurologist or therapist know what your little guy is all about. MY son used to tantrum over everything, even banging his head against the wall and screaming. He was fueled by things that were not always clear. At age three they have early intervention preschools through the school district and if he has gloabal development delalys, which is often a first diagnosis before the Autism Spectrum Disorders (ASD) one (my son had this diagnosis.--cognitive delay not otherwise specified), then he should probably start special education to address his issues. People on this board are very familiar with your son's behaviors, so don't let these two people make you think he's one of a kind. He's not. Also, do you have any mood disorders or substance abuse on either side of the family tree? Anybody with "quirks" who is a loner and maybe very bright? Any known autism in the family? I would take this child to a developmental pediatrician to start out the diagnostic process. CD is basically for people over 18. I doubt he has CD and you probably won't get that diagnosis from a Psychiatrist (with the MD) or a neuropsychologist. For the other mom with a child who has that diagnosis, I'd definitely get another opinion. There are so many things that look like CD. I'd look into early onset bipolar, which can look a lot like CD. In case you don't have an Autism Spectrum Disorders (ASD) diagnosis, you may want to test for a Pervasive Developmental Disorder (PDD). Here's an online test you can take. It's not definitive, but it points in certain directions.

http://www.childbrain.com/pddassess.html

 

[SRL]

Hi Dara, I'm glad you found us.

To help us help you better could you give us a specific list of your son's diagnoses? Plus the type of specialists that have been involved in making those diagnosis's.

 

[Dara]

Thank you all for your support. I cant even tell you how much better it is to know that there are other people with similar situations!
Sammy doesnt have a specific diagnosis at this point. He has been in ABA therapy because a friend of ours recommended it to us. For a while he was thought to be autistic but he is not. That everyone agrees on. The next thought was maybe siezures but that idea was gone because this behavior is controlled. He only does this behavior for us and not anyone else. The neurologist said he doesnt have any ideas because Sammy cant tell you what he is thinking or feeling. The ABA therapists said they have never seen behavior like this in a toddler to this extent. They have worked with Sammy for 2 years and have never seen his rage. Sammy goes to the extreme of his therapist walks out the door and sammy tantrums and looks to see if he is coming back and stops when he does!
I dont even know who to contact at this point. How do we find someone who specializes in behavior problems in toddlers. Most everything is for older kids!
Thank you again!

 

[SRL]

I have two thoughts for you. The first is that I would be scheduling an evaluation with a developmental pediatrician ASAP. You will likely need a referal from your own pediatrician for an outpatient appointment at a Children's Hospital for this. I really urge you to get a whole new set of eyes and opinions to look at your little guy. Developmental peds bring in the best of a lot of worlds: base degree in pediatrics with extra training in developmental issues.

I suspect that one of two things is going on here: 1) either there is something that is being missed or 2) more is being made of the developmental lags that he does have and that ABA is inappropriate for him. ABA is often a fairly restrictive form of therapy and I wonder if it's possible that while it's helping him in some ways, it could also be holding him back from normal development in others. Hopefully someone else with personal experience with this form of therapy could give their thoughts. This is me personally but I would be extremely hesitant to be continuing on with any form of therapy in which there is no professional diagnostic basis.

Honestly I'm just a little concerned in reading your post when I see "everyone" agrees he doesn't have Autism and "a friend" recommending him for an intensive therapy program. Beyond speech exactly what developmental delays did he have and what professionals diagnosed those delays? Did a physical therapist or orthodpedic surgeon diagnose problems that would have prevented him from learning to stand on his own? ABA is rarely recommended for developmental issues of an unspecified nature.

 

[totoro]

Hi I just wanted to welcome you... I know it is hard to deal, find help and understand all of this. You have gotten some great advice, and remember most of us here have dealt with something similiar...

The emotional rollar coaster seems like it is never ending, you find a pediatrician who will listen then you have to find a nuero-psychiatric etc...or a psychiatrist. It just goes on and on and then to get them to listen and believe you!!!

One thing that helped us was to write up a parent report there is a good guide under FAQ/Board Help the other thing is to try and video any of the behaviors that are causing concern, especially ones that difficult child is only exhibiting around you.
We did this and were able to "prove" difficult child had these symptoms and we weren't crazy.

Good luck

 

[BusynMember]

SRL has really good advice. Kids diagnoses at young ages are often missed or, worse, misdiagnosed. My son was 11 before they FINALLY caught the Autism Spectrum Disorders (ASD). Why do they feel your son isn't autistic? I got the "his eyes contact is too good" "he's too friendly" etc...the whole commercial. The fact is he DOES have Pervasive Developmental Disorder (PDD)-not otherwise specified and fortunately he got the interventions for it because I insisted (I believed he had it even when the professionals didn't think so). The older my son got, the more obvious it became that he was very different from other kids--higher functioning autism is often not diagnosed until the kids are older.It just gets missed. I'd definitely see a developmental pediatrician. He or she will keep an eye on his development. It's impossible to rule out anything at so young an age. It's best to keep an open mind, not always trust the professionals, go with you gut instincts, and get your child as much help as you can as early as you can. That never hurts. Delaying treatment does hurt.

 

[Dara]

We actually started out at an devp pediatrician and Sammy was diagnosed with low muscle tone at 9 months. We went to PT and Occupational Therapist (OT) and in a 3 month period they taught him how to eat graham crackers. They gave us 1 excersize which Sammy did on his own. THe friend that suggested ABA actually works there and teaches at the u of houston. For the most part, ABA has been fabulous for us. Sammy is extremly stubborn and his therapist has the patience of a saint. They taught sammy to walk, eat and pretty much everything he can do now. They did devlpmtl testing in october and found that he was about a year behind all around. His receptive language was behind as well as his emotional dealings with situations. ABA also helped Sammy deal with social situations. He is no longer hiding in a corner and actually participating in school. WHile Sammy does exhibit some autistic tendencies, he is not autistic. It had been a concern for everyone but therapists, neurologists, and pediatrician, as well as us, are all in agreement that this is not autism. It seems to be some behavioral thing caused by who knows what. He shows signs of a little of this and a little of that so it is hard to say what is going on. ALso that his behavior is so controlled is certain situations they are baffled. We have tried video taping but he is aware of the camer and knows to perform for it. If her werent so darn smart it might be easier! Other delays include motor skills and therapy is working with all of this but again the problem is he will do it fine in therapy with us and the therapist but when we go to do it Sammy goes crazy! I have worked with children most of my adult life and I have never met a child quite like him!
Thanks for listening again!
Lots of love and thanks!
Dara

 

[SRL]

I think you should return to the developmental pediatrician for a follow-up evaluation, especially since there are behavioral aspects that have worsened. If the same one is still on staff that MD would have the advantage of having seen your child at a young age as compared to now. If your child has had to be taught how to walk, talk, and do everything he is doing now he needs to be evaluated by medical specialists that are totally independent of the ABA program and who have a broader area of expertise than a pediatric neurologist.

I don't know what you're dealing with obviously since we don't know your child but approaching age 3 is way too young of an age to rule out Autism if there were early red flags and especially if he's been in an intense behavioral program such as ABA. I have a child that has Autistic traits but falls short of the diagnositic criteria and having a professional diagnosis of knowing exactly what we were dealing with helped me immensely. Whether you are dealing with Autism Spectrum Disorders (ASD) or Developmental Apraxia or some other disorder, you need to know exactly what it is and the specialists you are working with currently don't have the qualifications to make that judgment, even if they have been extremely helpful.

Behaviorwise, you should pick up a copy of the book The Explosive Child by Ross Greene. There's a thread about adapting it to young children at the top of this board.


Who did the most recent round of developmental testing?
How many hours a week is he in ABA?
Is he currently getting speech and occupational herapy?

 

[Dara]

I just got a number for devlpmtl pediatrician and phsyc. so hopefully someone will be able to help! I also called the school district because when Sammy turns 3 he can have free speech with the district. SInce our insurance covers none of the therapy we have done this far it would be nice to have something at no cost or little cost!
anyways, thank you for all of your suggestions. They have been extremly helpful!
Dara

 

[SRL]

A developmental pediatrician would be best in this case given the combination of physical and other issues. Next best would be a specialist called a pediatric neuropsychologist. I would advise against using a regular child psychologist or child psychiatrist at this point because we're seeing wildly varying evaluation results and not always very accurate. Thankfully you live in an area of the country that has a lot to offer nearby unlike many parents who have to travel.

Ask the school district for a full and complete evaluation. Most children with higher levels of developmental issues enter early intervention preschool at age 3 which would include not only speech, but if he qualifies Occupational Therapist (OT), PT. Many kids who come through here benefit from the environment and they can provide social skills and school readiness training that can't easily be done in other settings. They might as well assess for qualifying across the board right up front--you can always pick and choose if you don't want everything they offer.

It's free plue would also give a very tired mommy a break during the day--I remember those days and it sure was hard.

 

[tryingteacher]

Has he had a sensory evaluation?

 

[Dara]

He did have a sensory evaluation but I dont trust the person who did it. She was Sammys first therapist and she told me that she does things that I tell her to do. My response was I am not a therapist and if I knew what needed to be done why would I pay someone else to do it! Anyways, (SORE SUBJECT) It amazes me how much you guys all know. I was feeling so isolated before and now that I started here I feel so much better knowing that i am not a failure and other people have unfortunatly been through this or something very similar. Again Words cannot tell you how thankful I am to have found this place!
Thank you for all of the support!
Dara

 

[SRL]

Dara, I've never heard of ABA being a standalone therapy. Children who are in ABA programs typically also are simultaneously in Occupational Therapist (OT), PT, and/or speech therapy depending on their challenges. Assessments are usually done by professionals in these specialty areas who would follow up with therapy if needed plus make recommendations for therapeutic settings like ABA, home, school, etc. It's usually important to keep the specialty therapist involved in the evaluation, recommendation, and therapy process because they should be the experts in their field (and if they aren't they need to be replaced!) I've spent a lot of time around kids, sat in on my son's therapy sessions, did outside research, and considered myself a co-therapist but even with all that investment there was no way my knowledge or experience approached those whose who were by profession Occupational Therapist (OT)'s and Speech Language Pathologist (SLP)'s. I consider myself an observant parent but I was amazed at the minute details that professionals would pick up on that I'd missed simply by virtue that it was their area of expertise. They were a tremendous help in helping my son and helping educate me on how to best go about helping him.

Just a heads up on school district evaluations: some do an excellent job but many parents find that if they have insurance that pays for outside private evaluations it makes for a fuller picture. This is especially true for the area of Occupational Therapist (OT) because the school is only required to evaluate and treat those things that have impact in the educational setting. Some schools define that pretty narrowly and miss some important aspects, especially if they only do a screening instead of using full diagnostic assessments. If your district's special services department comes highly recommended by parents you'll probably be okay but otherwise if you have insurance you might want to consider adding on a request for private Occupational Therapist (OT) and Speech evaluations when you call Children's.

Keep up your good work in digging for answers and trying to find the specialists you need to evaluate. I'm a huge believer that specific, accurate knowledge about a child's condition is the key to making forward progress in problem areas.

 

[Dara]

I am in the process of finding/ making appointments for a dev. pediatrician and a neuropsychologist. However we might have hit a snag. Suddenly our insurance is not recognizing sammy as insured. Not that they have covered any other therapy but it would be nice...
I do have the book by Ross Greene It is very good but again trying to adapt it is hard. I cant think so clearly anymore today. It has been a rough one. Sammy has battld me through the entire day today and I think i need to go to sleep

 

[SRL]

Oh my! Better get that insurance issue cleared up right away. If there was an emergency or other extremely costly illness it could be a huge mess and/or financial drain.

Sorry about the long hard day. Be sure and check out the thread on adapting The Explosive Child to young ones at the top of this board.

 

[Liahona]

Just wanted to add a welcome. Maybe you could set up the camara just to get him to be good for a bit? :wink: Or, if it is constantly out and everyone is pushing the button once in a while he might get used to it and act up anyways. Every time he acts up you go and hit the rec button at least you'd get a few times of him stopping the rage. Also, there are camara's that are hidden. I've never bought one though.

 

[Dara]

Unfortunatly the camera does nothing. We have had it out for a month and he knows when it is on and off and performs accordingly. The thing the therapists didnt like about the hidden camera is that there is no sound. It is difficult to trick sammy. He catches on way too fast! One thing I can say is he is smart!
Thanks!
Dara

 

[BusynMember]

I agree with keeping the Autism Spectrum Disorders (ASD) possibility open. He sure sounds like that could be part of it, even if it was ruled out. He's too young to really get an accurate diagnosis, and he has more symptoms of it than my son had, and we found out he IS on the spectrum. My son, however, could walk and echo, at least. His muscle tone was also low. I'd try really hard for the interventions, at this point, but wouldn't let anyone rule anything out at so young an age. I also agree with making sure it's not a genetics disorder or a medical problem. If not, I'd maybe visit a neuropsychologist or another Dev. Pediatrician. "Bright" in one area/delayed in another is a big red flag. Good luck :smile: