Looking for advice

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My four year old nephew (who I have custody of) is in the process of being diagnosed for autism and/or PTSD.

I don’t know really where to start or what to say, except that I am at a complete loss tonight.

Two years ago, I lost custody of him to his dad, and just recently, got him back. When he left, he was your typical, happy, funny, smart two year old. Since hes returned, hes been a completely different child. He no longer seemed to be able to talk, and his frustration in not being able to do so, was taken out by slamming himself on the ground, thrashing around, and screaming. For a while, he was terrified of everything, and anything. Anyone new, anything new, would send him into a complete melt down - usually ending up with him on the floor, apparently unable to control himself. Most of this could be contributed to the “PTSD” but Im not being told very much information from his therapist - who isn’t completely sure yet.

About a month ago, things seemed to change. He was more calm, willing to participate, new things weren’t so bad, and his speech was starting to come back - he would mimic certain words.

But this past week, things have slid downward again.

These past four nights, have been sleepless for the most part - he wakes up screaming, and wont go back to sleep. Hes resorted to his old ways, and anything that involves leaving the house will result in him throwing himself to the ground. He does better if he is able to stay in his “Corner” where he would be happy to remain all day…muttering sounds to himself.

Up until about two weeks ago, I was being told that he most likely, probably had some form of autism, but no one really could be sure. This past week, after different things took place…PDST has been introduced as a possible contributing factor, but Im still being told that Autism is most likely a great part of it.

He will have nothing to do with anyone now…people he “trusted” last week, have suddenly went back to being “Not trusted”, and Im at a loss as far as what to do now…

I guess I was just basically wondering if anyone else has had a similar situation. Is there hope for his future?

Hes got a great therapist who has helped him along these past few months…but I don’t understand a lot of the “Doctor talk” and was looking to talk with people who might have a more, “Personal relationship” with autism, and/or PTSD.

Thanks.

Wow, that is a whole lot to be dealing with for both you and him, it makes me so sad to read that

It sounds like his behavior is directly related to whatever happened with his father. I'm not even going to begin to speculate or ask about that. But it sounds like even if it isn't autism and it is all psychological trauma, that therapies that help autistic kids might be a benefit to him, so either way i think this will turn out in his favor.

I think you're a wonderful person, he is very lucky to have you. I hope he gets the help he needs and is able to recover from the trauma he's suffered.

Have you been to your local library and gotten some books on Autism and Pervasive Developmental Disorders? Reading books
on such subject manner will help you understand such "doctor" talk. Or check out the website of the publisher, " Jessica Kingsley
Publishers at...WWW.JKP.COM There you will find a list of some great books to read. You do not necessarily have to purchase
these books. Simply write down the titles and authors and your local library should be able to get them for you.

Is there a mental health clinic in your community that attends to the needs of children? Your nephew's Pediatrician should be able to connect you with resources as treatment facilities, child psychologists, therapists,etc especially since your nephew is a preschooler.

In my community, they do preschool evaluations (physical, psychological, social, emotional) on children and then, determine what children need to prepare them for the start of kindergarten.

Best of luck to you!

Seems like the Dad caused problems for the kid and didn't deal with the kid's needs correctly, or tried to believe those needs could be changed. Have you been able to find out what happened to him while he was with his Dad? It may help your understanding of the why of things and then you and your nephew can work out what he needs together.

Your nephew has already been through an awful lot in his young life, and I say that without knowing anything at all about what's happened to him. First, something must have happened for him to have been in your custody previously. Then he went through a serious trauma in being removed from your custody and being placed in his father's custody. In order for you to regain custody, not only did he have the trauma of the change of custody, but there must have been something seriously wrong, since courts so strongly favor a parent over any other relative. I am pointing all this out mostly to say that if your nephew has some form of autism, that would be only part of his issues. The likelihood is very high that he is suffering from PTSD as well.

It is sad and unfortunate that he has had this regression. Did anything come up in therapy that would account for it? Are there visits with his father that might have triggered a problem? Did something happen at this time of year, in the past, that could be causing him to have flashbacks? Might he have overheard something that would have caused him to fear for the stability of his placement with you?

Working with a child with PTSD is tricky. You need to give room for the child to work through the issues without re-traumatizing him. If the working through re-traumatizes the child, it is counter-productive. You need a really, really good child therapist. I hope the person who is working with him is such a person. You may need to schedule a separate time for you to speak with the therapist to find out what s/he is seeing, and how you can best support your nephew at home. You need to work together to make sure you are not doing anything that will work against what is happening in therapy. In truth, much of the time, with children that young, a lot of the therapy actually happens at home anyway, and you need to know what to look for, what to do, what do avoid.

If you know what happened, you need to make sure to protect against a re-occurrence. If you don't, you need to be vigilant about making sure that your nephew feels safe. In either case, you want to provide space for him to share anything he needs to.

There is certainly hope for his future ... and it will take a LOT of work. It will be worth it, though.

Thanks everyone, for the feed back.

I know that he has been through a lot, too much for his age. However, because of the “Custody issues” information has been limited, until recently - when I got a more of less, inside look on things that his dad was trying to keep “Confidential”, and while I don’t really want to go into details, I will say it would be enough to cause anyone, “Issues”.

When he gets really bad like this, he doesn’t want the people he trust, to leave which becomes an issue when I have to go to work, and my other kids go to school. Ive taken the past few days off, but can afford to take anymore, and instead, am forced to explain to him the best I can that I will be back.

Ive flipped back and forth through a lot of things, and have to wonder sometimes if its doing him any good to stay here…not that I don’t WANT him, but if its causing him some of these problems…I dont know, I want to help him, but feel so...helpless...

Either way, Thanks everyone for the feed back, book references, and ideas…I really appreciate them all.

I would find someone who is willing to diagnose him. At this stage you need to know if the problem is inflicted or just who he is or both. A lot of autism cases show up after age two, thats part of the whole "immunization causes autism" misunderstanding. The child is fine until two or three and then they make a sudden change.

I guess the only thing I can think of is get answers from someone that you can talk about all the details and get a plan of action. If it is PTSD, I can't offer any help other than what I've heard or read.

The manifestations that you are seeing are most likely form anxiety, whether this is from PTSD, HFA/Aspergers or some combination of the 2 is hard to tell without an evaluation by a highly experienced clinical team in both areas.

Reading Tony Attwood’s “the complete Guide to Aseprgers” C2007 will provide you with a lot of insight into HFA/aspergers and it is available on Amazon for about $25.

bookwormde

My son has a very stable loving family and at the age of about 2yrs we noticed regression. Like your nephew he would rather spend time in his 'corner' than be with the family. He did loose his language and retreated to his own little world.

We had wonderful advice from a psychologist assessing him at the time. We were advised to include him as much as we could in our every day life. Give lots and lots of praise for any attempt to communicate with us etc.

My son is now 4yrs, his words have come back, and he is putting words together now. He is a happy sociable little boy. He did 'come back' after lots of our own intervention at home. Even before he had a diagnosis, we decided to work with him as if he had an ASD, and then if it turned out that he did, his intervention had already started!! He wasnt diagnosed until 3.5yrs. I am more hopefull for his future now. I understand that worry of 'what does the future hold?'.

Just create a safe place for him at home, and find out what 'lights' him up. My son loves to play chasing and rough and tumble games, so still if we see him shutting down a bit, we all start chasing around the house!!, he just loves it and is immediately back with us again.

He is such a lucky little boy to have you in his life xx

You might also want to review some of Stanley Greenspan’s work with “floor time”

It is a play-based program, so if PTSD is a component, it is probably one of the least invasive ways to attempt some therapy, here is a link

http://www.dirss.com



bookwormde

Ah great suggestion....Greenspans 'floor time'.

Or also look up: 'The Hanen Speech and Language Programme'.

Or: 'The Marte Meo Approach'

These three programmes are what we followed at home. I even use some of the approaches with my NT kiddies.

They are great cause you can be 'working' with him, in every day normal living xx

First off, I want to thank everyone again…wow.

My nephew has started to come “Back” after a week of going off to where ever it is he goes…We should have more information this next week, this week has been a really rough one as far as weeks go, and hopefully next week we will be getting answers and starting off on the right foot again. It sometimes seems that any amount of “Progress” he makes is met by turning around and going back to where we started.

FD - you son sounds almost similar to Josh. A few weeks ago, he had been starting to reintroduce words, not stringing them together or anything, but he was saying words with meaning behind them…then this week, everything seemed to just go out the window.

Ive been told that he plays off of how things are in his surroundings. That if things are tense, and stressful, he will retreat in his “little world” and act out the only way he knows how…which makes sense.

Thanks everyone for the links, book recommendations, and ideas…I will definitely be looking into them all.

Thanks again…

dbinak,
I just wanted to say I think you are doing something really special for your nephew. He is really lucky to have you there for him. It may all seem like hard work now but the rewards will out weigh the hard times. Even the fact that you were questioning if you were the right placement for him just proves to me that YES you are. You have proven in your posts that you only have his best interests at heart. Well done to you and your family, your doing something really awsome.

Thanks aurea that really means a lot to me! Its been a long road to get where we are today with him, and I know it wont be easy from here on out, but we look forward to the days like today when hes hyper, and excited about everything and anything. Thanks everyone for your feedback and advice, it really means a lot to me, I didn’t expect these kind of replies…thanks again…! !