[lucyjoy]

I've spent the last four years trying to find any and every opportunity to help my son, now 13. No doctors/therapists offer any hope for any kind of future. T's a very angry boy whose brain is damaged by someone's alcohol abuse before his birth, abuse by his bmomand her boyfriend, seven years of abuse in the system. We've tried every kind of treatment we could find, special schools, home school. He's made progress, but the last year has been very trying with very little progress. Is it time to accept that he's gone as far as he can and maybe just try to make his life a little more fun? Should we start looking for assisted living and work programs for the diabled that he may need to live later on? Or do we keep pushing in as much as we can and researching and trying new treetments that may or may not work? Should we spend more time on social skills than life training and education? I know that there is more he could learn if he had the desire, but he doesn't. He spends all his energy avoiding anything and everything that may pose a challenge and would be perfectly happy to be left alone with a pair of shoes to play with if noone bothered him. How do you know when to stop and when to keep going? I feel like everyone has been working on his life but him. That would be o'kay if he would show even the slightest interest in his own life. I've tried not working on his life and letting him live with the consequences. He was perfectly fine with that as long as noone bothered him(that darn law about education keeps getting in his way) . I'm tired. I'm out of ideas and I see no light at the end of the tunnel (nor do any of the professionals I've consulted). Anyone have any suggestions?

[Peggy]

No real advice, just that I feel for you. I sense from your messages that you are a very involved and dedicated parent. I do not envy the decisions you may have to make.

[Just Julie]

When is enough enough? My husband has a quote which I will attempt to paraphrase. When you stop longsuffering because you think it is best for you, it isn't long enough. When you stop because you think it is best for everyone, that's long enough. Well that was easy to say and just food for thought. Only you can answer, and the rest of us cannot say you are wrong!

Lucyjoy, I can'y even imagine the frustration you are going through. What kinds of activities would make your son's life more fun in his eyes? TV, swimming, playing in mud? What do you mean by life training? How severe are his disabilities? Can he toilet, dress, and feed himself? Can he speak, read, and understand English? What about music preferences? Sorry to ask all this if you have posted specifics earlier.

[lucyjoy]

My son is 13 and emotionally functions betwwen 2 and four. He reads on grade level or higher, performs and test for school at first grade. He was 9 and couldn't read when he came here. I know he is capable of learning much more, he just doesn't want to. We haven't found too many activities he enjoys. He just wants to play all the time. He can do chores, dress himself, brush his teeth and bathe(though he won't without being told and gets angry about doing it). He use to scream for six hours a day, but he hasn't done that for over a year now. He can't count money, subtract, figure out what numbers to put in a calculator even to subtract. He can memorize the steps, but doesn't get what the numbers mean. He really just wants to eat and play and not be bothered. LIfeskills would be things that would allow him some independence-using a microwave, cooking for himself, shopping for food, laundry, that type of thing. I at least thought he'd get to some point of independence and he is so angry and miserable to be around all the time. If he were at least pleasant it wouldn't seem so useless to keep trying. He also makes up these incredible lies about us and other people and tells them very convincingly. The school got so fed up with him at 11 that they told me they didn't care if he learned anything or not, they just wanted him to sit down and shut up. I'm just really frustrated and have no available respite as he's a past sex offender.

[aMarylandfamily]

... but know that our hearts and prayers are with you. Sometimes "enough" is short term and other times it is long term ... only you can answer the personal-ness to "enough". Having come to a decision a few years back when disrupting a placement (not yet finalized) we waited too long and added emotional hurt to both the family here and the children being put back into the system as we wanted to but couldn't meet their mental health needs. And today our latest placement resides in RTC with a roller-coaster prognosis ... some weeks are good - others are worse than ever deemed possible from both an emotional and violence nature. And yet ... during a requalification for state medical assistance, I was reminded that without us in his corner (at this point until we are interfering with those services being provided at this level ... without social service or juvenile services intervention) his treatment wouldn't be so directed (hope that's what I mean) as it is being followed behind 100% of the time.

Hang in there, but not too long - remember to look at the whole family/household picture vs. the love you share for him - that will never go away - just modify the way it is given - through yourself or through services - even when it means cutting a string or two or more.

Keep us posted ... we are here to listen always!

[Barksum]

You mentioned that he is emotionally between 2 and 4. For a 2-4 year old to want to play most of the day with a pair of shoes or whatever isn't all that abnormal. Yes, I know he's 13 and he should be doing more and other things. But if inside he is functioning at the 2-4 year old level, go there for awhile and see if he can progress to the 3-5 year old level.

What would you be doing with a 2-4 year old with regard to life skills? Picking out their own clothes and putting them on. Safety skills, manners, social interaction, etc. Work at the approximate level that he's been tested out to and see what happens. Sure he should be doing other things, but if he's only been with you 4 years and has progressed as far as you've mentioned that's pretty good considering he was SO behind at age 9.

With "normal" child development there are slower and faster cycles that they go through. Perhaps he needs some reinforcement and the encouragement of going over what he already knows. Firming up areas he's shaky in and doing the things that he's mastered so he gets LOTS of accomplishments done each day -- just a few skill levels back.

This may be what you have already done, it may be totally out of line, etc. but I thought that maybe if mentally stepping back and going back a few developmental stages for awhile gives you some renewal for going on for the long haul, then it isn't a bad thing to try. I don't know you, or your son, or your family dynamics, so take what you can use and toss the rest.

[louise]

I have two of them and boy can they be tough to live with.

I have some contacts and info on FAS/ARND if you are interested. There are no concrete answers with these young people. Depending on your perspective the prognosis is either bleak or hopeful. I have come to accept that the brain damage is permanent and incurable. I will facilitate my children's learning in whatever way I can and allow them to learn in whatever way *they* can. I expect that both of my ARND children to need assisted living support into their adult lives. We are already making preparations for just that. I have moved past seeing this as 'failure" or "giving up". I see it now as meeting my children's needs in the most appropriate way I possibly can.

Sometimes the best we can do for our children is to take care of ourselves. Take care of yourself, Lucy, you are doing the best you can.

[SoulWhisper]

I have no experience with fetal alcohol syndrome but I do know what it is like to deal with a child with ADHD and wear myself out. My son, now 20, has been THE most difficult hurdle and the most stressful of all 3.


I remember times that I cried myself to sleep and felt that I hated my own child. He was just impossible and there was no joy. Even today it pains me to refer to him in such a way but my journey with him turned me inside out.


I was at the school every other day for meetings, I knew all the school staff hated both of us. I couldn't take him anywhere and the professionals had no answers. I finally turned to therapy for me and there I learned how to let go and focus on what he could do instead of what he couldn't.


I learned to accept his deficit and build on his actual capabilities.I was told that one family member cannot be allowed to dominate life, that sacrificing all family members happiness and sanity for one member was unhealthy and I didn't have to be a saint.


He is 20 now and still a pain in the heart at times but it helps me a great deal to look at his good qualities and what he is capable of, rather than what he isn't. I did put him into a treatment facility at one point and it helped us all but making that decision is a very personal one.


We do not have to be martyrs and it is written nowhere that we must sacrifice ourselves for anyone. You are no less valuable and deserving of joy and peace than your son is. If you have done everything within your power and you are still swimming upstream...you have the right to choose placement, and to have a life without so much stress.
Just my thoughts...

Love

[lucyjoy]

Lousie,
I'd love any contacts or info you have regarding FAS/ARND. I stumbled on some information on this looking for education programs for T. His very trined therapist told me T didn't have the facial abnormalities so it couldn't be that. I did more research and he does have abnormalities in his sternum.and is very small for his age.
Anyway, I had someone else do a Nueropsych developmental eval and she said definetly FAE or drug exposure and told me which part of his brain appeared to be damaged. She suggested brain gym exercises, but told me he was probably to oppositional to do them. I tried finding his original birth records, but noone seems real clear on where he was born. The records I have indicate he had a normal delivery and no problems at birth. The Psyclogist showed me healed over infant IV scars in his belly button and also behind his ear.
School was doing more harm then good and called me 3 times a day. When he was in school, he would come home and scream for hours again.
I tried to find alternate programs, but they are expensive and didn't help much. The law insists that I teach him a thousand hours of education a year based on information I feel will be useless to him later on. I'd rather teach him about life expenses, how to make money, how to get along with people, and find something he's good at and enjoys that he can support himself as an adult(even if he does require assistance).
I think it would be easier to handle the learning disabilities and other problems if her were at least a nice kid. He's mean to everybody at home and the other kids don't want to be around him at all. He also has sex issues that make finding respite impossible.
Thanks for the advice and support. I feel better then I did and I think it is a matter of giving up and restarting in cycles.

[Barksum]

I found ALOT on the internet in just using a search engine and typeing in "fetal alcohol effect" etc.

One book that I can recommend is "Trying Differently Rather Than Harder" by Diane Malbin. You can purchase this at http://www.fascets.org

We are starting in with two children with FASD. One child we KNOW has impairment, the other isn't old enough yet to know but we assume since he was exposed that there will be some level of impairment. I can't explain my gratefulness to have identified the tip of the iceberg while they are so young -- and to have found a source of information, encouragement and help. My attitude has changed significantly now that I know my DS isn't yanking my chain, but has a physical disability that interfers with his ability to process and act on information received. He needs reminders all the time, but I'm learning to not be irritated but just accept that this is my son and go forward.

We are learning to change our environment to enhance our son's ability to cope and we are willing to give him time, with the understanding that he may always need assistance of some sort. Oh, by the way, I've read some interesting information on FASD and the findings are that many of these children start to "catch up" in some areas in their later 20's, up to about age 30. So when I say we are willing to give our sons time, I'm thinking looong term (with the potential for life long help being needed).

It is interesting that Soulwhisper mentioned her ADHD son. ADD used to be known as "minimal brain disorder", but then changed over time to "attention deficit disorder". The interesting thing about AD/HD and FASD/ARND is that they center around brain impairment(s) of some sort. Attention is focussed on finding ways to enable the child to learn to their potential (and since we never really know what that potential could be, keep pecking away) and helping them to learn to cope with life in general.

The thing that just angers me no end is when professionals say, "Your child doesn't have dysmorphic facial features, so he CAN'T HAVE fetal alcohol problems." Oh, puhleeeeeze. We are NOT in the dark ages here folks! Brain impairment doesn't always show on the outside. Rather, brain impairment is often an invisble physcial handicap. See that "invisible" part there? This means that their legs don't drag, their face looks just like any random sample of humanity and the only visible sign we have regarding their physical handicap is their behavior.

Oops! Sorry to get on my hobby horse again.