Newbie with Lots of questions :)

[judytor]

Hi everyone I just wanted to post an update. We didnt hospitalize N. When I called up to UCLA they told me they no longer have an inpatient program for little ones and they put them in with the adolescents. That cinched it for us.....I didnt want my baby in with older kids

I totally and completely lucked out though. I wound up getting an appointment with the head Dr. for the early childhood outpatient psychiatric program up at UCLA for this Thursday! The nurse told me not to be surprised if we have to wait for 2 hours....I was like....listen, I've waited 4 years....what's 2 hours more...lol.

This week is also the first week where all the kiddos are home and it's already a HUGE problem.

N wants to play with my other son W (who is visually impaired and also has sensory issues, etc).....well when W says no, N FREAKS OUT and winds up clobbering W. I cant spend my summer playing referee again

I'm counting down to thurs and hoping this psychiatric can help us. Meanwhile, we go back this morning for possibly our final session with the psychologist who is doing the neuropsychologist evaluation on N. I'm hoping she'll give me some tips on surviving the summer....

Any advice from all of you that have been there done that? Thanks

 

[SRL]

How did the appointment go?

 

[judytor]

How did the appointment go?

Please forgive my absence! I don't know what happened but I lost my bookmarks and after looking around for a while, found my way back here.

Anyway.....so much has happened since I last posted. We have been seeing that psychiatrist up at UCLA. He is wonderful. He believes ds4 is definitely on the autistic spectrum. He also sees severe anxiety and ADHD. He prescribed Ritalin which was HORRIBLE. Ds4 didn't respond to it well. We then went back to the Lexapro (but at an adjusted dose). We go in in a couple weeks for another follow up. Honestly, I don't see much of an improvement on either medications he's on (Risperdal or Lexapro).

We also had him evaluated by the school district again (HUGE FIASCO). The school psychologist that evaluation'd him, told me he was not autistic after 5 MINUTES of being with him. Her reasons? He made eye contact! She refused to put it in the IEP. (even though it was an MD (one who specializes in Autism Spectrum Disorders (ASD)) who diagnosis'd him). Ughhh.
They wanted to label him ED. (I said no). They placed him in an ED preschool program (we took him out after two weeks). I loved the teacher but it was clear that a "behavior mod" environment was NOT what my son needed. They school psychiatric said he was manipulating me and he just needed some serious behavior mod.
Next we saw our Regional center for an evaluation. (they offer services IF your child is full spectrum autism). They diagnosis'd him with Pervasive Developmental Disorder (PDD)-not otherwise specified (so no services) and also with mood disorder-not otherwise specified and ADHD also separation anxiety.

Recently I spoke with a leading researcher in Fetal Alcohol Syndrome (FAS) who assured me that my son most likely has Fetal Alcohol Effects (FAE). He fits much of the criteria and it would explain why he is not fitting perfectly into any diagnosis.

We are currently reading The Explosive Child and I am hoping to implement that model.

Going back, I really did like the preschool teacher but she too, thought we just needed to battle through the rages to MAKE him stay in time out. The thing is, ds4 does NOT respond to time outs. He rages more. Ironically, he was "good" for his teacher. She held him in time outs a few times and he fought her for a good half hour but then listened to her. It's different for me. He is "safe" at home. When I tried holding him in time out he FLIPPED OUT. He kept saying "You like to hurt me" and "You're trapping me". He's 4! He has a super hard time understanding abstract concepts. He often looks like he "gets" it even when he doesn't. He is constantly taking things the wrong way.
He is EXTREMELY anxious and sensitive. He took the bus for two days and was harrassed by older children both times! He was also spit at by a classmate in class.
I don't want him in that type of environment. Sure, he's "good" there and it looks like he's "doing well" but then he comes home and just MELTS. I know my son and I know that it wasn't working despite what the school district might think.
I wanted him in the autistic preschool program because he has language delays, he is developmentally delayed (not much but in emotional regulation and fine motor). He has a whole slew of challenges but they are just quick to slap an ED label on him because they think it's his behavior that is causing the problems.
I want to get to the underlying causes. I want to help him in ALL areas. We are currently homeschooling him because I just can't fight with the school district. They want to pigeon hole him and I wont have it.
I also, however, feel somewhat back at square 1.

Any thoughts, input, etc?

Also, I started a blog about all of this but not sure if it's ok to post?

So glad to be back
Judy (who promises not to lose this site again!)

 

[Ropefree]

Welcome and yeah for the progress. even though it is not quick,clean and clear the journey is about what works.
I am curious if you think the teacher is good, and your child is responsive in her care
what it is you feel is not workable for having him with other children exactly?
The socail interaction does lead to learning and abet not all of what children learn from each other is what one hopes...they do need the routenes and the pre-school situation does offer that. Also even if the intial offer from the school is not ideal, can't you press forward through the system and ultimately achieve what is approppriate.
I MAY BE ALL WRONG...I just am vague on what is insufficent. (Thick as a brick...what am I missing?)
Having our kids in a program with other children is a good thing for them. It is also a big frightning thing for parents when we feel our children are not getting proper care or little kids do seem rouph. (oh what all did happen for mine at four). Just wondering.

 

[SRL]

Hi Judy,

It sounds like you've made some progress, even if it's not as much as you'd like to see. I just groaned when I read about the school psychiatric ruling out Autism Spectrum Disorders (ASD) because he'd made eye contact--you can't believe how many variations of that I've read.

Since your child is so young and the school district is being so inflexible, if I were in your shoes I'd hire an educational advocate. An advocate is one who is familiar with special education law and has a handle on how the local school districts like to fulfull or not fulfill those obligations. For instance, legally the school district cannot deny services based on a specific diagnosis like Pervasive Developmental Disorder (PDD). By federal law, services are always based on need alone. Need--not diagnosis-- should drive placement so if the Autism class was the most appropriate setting then that's where he should have been placed regardless if the diagnosis was exact or not. They can help with other things like helping make sure the school puts in place steps that may help towards anxiety reduction (such as classrooms breaks) and an aide on the bus. You can use an advocate in a consultant role only but many parents will bring them along to the IEP meetings. If your district isn't at all cooperative, it's worth the investment early on because I can assure you that the services your son is legally entitled to will cost enormous amounts for the long haul.

Also, one additional thing you can do is to get the doctor to advocate for you. Surely they sent you home with a report including recommendations to the school? When schools are uncooperative the doctors often are willing to tweak the diagnosis just to get them the services and/or write strongly worded letters which can sometimes help.

Just a word about the diagnosis: it's possible there is more than one thing going on here or that you're seeing overlapping symptoms. It's really common in younger children for the diagnosis to be unclear. What is really important is they get the kinds of intervention they need, and really good teachers and therapists can take that early working diagnosis that's "in the neighborhood" and run with it.

As for your blog, we strongly advise parents not to post anything here or links elsewhere that could in any way identify your child--whether that's through pictures, locations, descriptions of situations, etc. We have had situations where others (ex-spouses, school districts, doctors, etc) have found the site and recognized the child. If you're unsure, you can send me a link through private messaging and I can take a peek.

 

[judytor]

I am curious if you think the teacher is good, and your child is responsive in her care
what it is you feel is not workable for having him with other children exactly?
The socail interaction does lead to learning and abet not all of what children learn from each other is what one hopes...they do need the routenes and the pre-school situation does offer that. Also even if the intial offer from the school is not ideal, can't you press forward through the system and ultimately achieve what is approppriate.

Hi there Actually, while I do love the teacher, I don't necessarily agree with her discipline tactics. She is of the mindset that I need to impose time outs on ds4 even when he's out of control. He just doesn't respond to time outs and it actually makes things worse. (I have successfully used time outs with my other NT children and it has worked so it's not that I'm opposed in general).
As far as the preschool setting, I just didn't feel it was what he needed. (His teacher even agreed that he probably needed a different environment but said for stability sake, we should leave him there til the end of the year).
Ds4 has a multitude of needs. I don't have the time or money to fight the school district right now. I need to get ds the help he needs and not cause more damage along the way. I felt like keeping him in that school was only causing more problems for him. I hope that makes sense

Hi Judy,

Since your child is so young and the school district is being so inflexible, if I were in your shoes I'd hire an educational advocate.

Just a word about the diagnosis: it's possible there is more than one thing going on here or that you're seeing overlapping symptoms. It's really common in younger children for the diagnosis to be unclear. What is really important is they get the kinds of intervention they need, and really good teachers and therapists can take that early working diagnosis that's "in the neighborhood" and run with it.

Hi there We have looked into hiring an advocate but we are so beyond broke right now. We have spent so much money out of pocket getting some of the evaluations done and seeing different specialists (we used our private insurance and one psychiatric didn't bill insurance and we're still waiting on them to reinburse us). We now have medi-cal for him but not all Dr's take Medi-cal.
I agree with what you're saying about the diagnosis's. There are so many different things going on with him. When I spoke with the FASD specialist, he told me that it was good that my son had an Autism Spectrum Disorders (ASD) diagnosis because that was our "in" for services. However, like I said before, the school district says they don't "see" the autism and while he does have some problems with speech and social development, they believe his needs would be best met in a behavioral mod setting to which I vehemently disagreed but lost the argument.
Ds4 absolutely needs structure. He also needs intense physical and occupational therapy. He needs help with communication and speech. They didn't even do an Occupational Therapist (OT) evaluation. with the school district. They said that would come later. They also only had him with ST for 2x a week at `15 minutes each time.
Right now we are focusing on homeschooling him and also getting Occupational Therapist (OT) and PT set up (hopefully with his Medi Cal). I also am using the CPS model (The Explosive Child). I was hoping to get him into a co op type preschool until we can hire an advocate to work these things out. Sorry this got so long.....I could type for hours about all of this......

 

[Ropefree]

Hell0...I know that this is exhausting for you and it is alot of goiiing over the same things. And the reason to keep your needs going through the school is that they are not going to get what your child needs to be accomidated apropriately until you do inform them that you are aware they are not.

It does mean that teachers have to use differant meathods than what they may be using then so be it.
It sounds to me that having a skilled behavor help in this mix is the best chance your child has to learn new behavor. Perhaps an aid who has that special touch.
I did a vocational training in early childhood developement and had a field piece to do. Maybe you need to find someone doing that who has "technique" and can be there to instil with the firm and attentive awarenes EVERYTIME the child is going into the tantrum. I have fantastic success not just beacuse I did hold a child in a chair like they were drownding, right across the body like a seat bealt in a chair.
Not talk, not look...sometimes I would lightly hum a soothing sound. Children do respond to this because they are out of contromm and when being held they feel
that too. Eventually children do THEY DO learn to want the time out. Not as a punishment...it is not a punishment...it ought never be treated as punishing...it is a safe place to ride out those emotional out of control states. It is a self modifying behavor skill eventually. It is physically removing from the stress and actively being with the act of not doing anything.
How you have come to the conclussion that time out doesn't work for your child makes no sence to me...you know more about your child...it is that since the act of time out is a safe place to be in tantrum untill it passes
I can not imagin what it might be that you mean when you offer the idea that it does not work.
What do you think will work?

 

[judytor]

How you have come to the conclussion that time out doesn't work for your child makes no sence to me...you know more about your child...it is that since the act of time out is a safe place to be in tantrum untill it passes
I can not imagin what it might be that you mean when you offer the idea that it does not work.
What do you think will work?

I am of the belief that not all parenting techniques work for all children. I don't think time outs (forced time outs), are helpful for all children. They may be helpful for some but not all.

When I say they don't work for my son it's because I've seen first hand how he responds to me holding him in time out. It's a trust issue.
Like I said before, we are implementing the CPS model (collaborative problem solving) that is described in the book "The Explosive Child". It talks about time outs not working for explosive children. Time outs do not teach the skills of flexibility and frustration tolerance and that's what we need to teach our son right now. I hope that makes sense. It's hard to explain it without going into more detail but there is a sticky here with adapting the Explosive child for the younger child.

 

[Mandy]

I just read over your thread because I also have a 4yr old that I am in the process of getting diagnosed! I finally got an appointment. scheduled for him for next Thursday and I am so ready! I totally agree that timeouts do NOT work with explosive children!!! Cole can go into rages for hours so most times they are not worth it. We have also been following the deciplince techniques after reading the Explosive Child and have found them much more effective. I used to hold him in timeouts and could not figure out why he wouldnt sit like a normal child We have come a long way since then!!

 

[judytor]

Thank you so much for posting! I feel very alone most of the time. I really appreciate the support! Good luck with the appointment next week. Please let me know how it goes

 

[BusynMember]

Ok, yaaaaaaaaaaay, I found it. Here is a book I was told to read regarding Fetal Alcohol Syndrome and Fetal Alcohol Effects.
http://www.amazon.com/Fantastic-Antone-Succeeds-Experiences-Educating/dp/091200665X

I have an autistic son and he CAN remember things from one day to the next. He always had a fantastic memory, even though he was also exposed to drugs and alcohol in utero (we adopted him at two). He has some facial anomalies so the doctors thought for sure he was on the fetal alcohol spectrum, but now, at 15, clearly he isn't. But I did study Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) when he was very young because I never dreamed he'd dodged that bullet.
At any rate, I've heard fantastic things about this book. I agree that your son probably does have Fetal Alcohol Effects (FAE). I'm astonished that ANYONE who claims to be published in the field of Fetal Alcohol Syndrome (FAS) doesn't know that Fetal Alcohol Effects (FAE) kids have NO physical anomalies. They are not, however, any better able to function than those who have Fetal Alcohol Syndrome (FAS). Heck, we even went to a nation-famous clinic in Chicago that specializes in Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) kids. Look up Dr. Ira Chasanoff in your search engine. He's a pioneer regarding kids with these issues. I actually met him and he met my child.
Keep us posted and don't let dumb professionals (sadly, they do exist) contradict what you already learned. Trust your Mom Gut. Unfortunately, these are great people here, but most have not had a child who was exposed to alcohol in utero, and if ya know your child can't have a disorder, usually you don't know a while lot about it. In our case, we had to learn about it. Son had crack in his system as a newborn so we knew darn well his birthmother didn't say "no" to alcohol. Interesting trivia: Alcohol actually harms a developing fetus more than cocaine. Hey, glad you're here.

 

[judytor]

Thanks Midwestmom! I googled Dr. Ira Chasnoff! He has some great articles out there!

This is such a difficult road because there are so many unknowns! We see ds's psychiatrist tomorrow and I'm hoping to make a case for Fetal Alcohol Effects (FAE) with him. We've tried a few different medications and they don't seem to be making any difference. It makes me think that ds's challenges are rooted in organic brain damage

Anyway...thanks again!

 

[BusynMember]

I don't know if I asked you this before, but have you ever read "Fantastic Antone Succeeds?" about Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE). That would be the main problem if that's what he has. Or I should say, the hardest problem to do anything about, which could make the other problems worse. He is going to need non-stop supervision and constant reminders (repetitiously) not to do this or that because he won't retain what he was told. Whatever else he has, treat it, but always remember that if he has Fetal Alcohol Effects (FAE), it's not his fault when he gets into trouble. The way I understand it, Fetal Alcohol Effects (FAE) is organic brain damage, like Alzheimers, and the kids are a lot like Alzheimers too. They don't remember things. It's not as extreme, but it's along the same lines. They especially don't "connect" between cause and affect no matter how hard you try. Close supervision in my opinion is the best help for him if he has Fetal Alcohol Effects (FAE). Here's a link to the book; it is very upbeat:
http://www.amazon.com/Fantastic-Antone-Succeeds-Experiences-Educating/dp/091200665X