FASD issues. I need replies. - Mothering Forums

 
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#1 of 16 Old 07-23-2009, 07:37 PM - Thread Starter
 
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Ive posted at MDC with issues when I really needed support. Rarely have I gotten replies at all. Please, I need some advice. Finding a support group isnt an option at this time as the one support group for FASD Ive contacted resulted in a conversation with a drunken woman about her 15 yr old FAS kid whom she has turned over to the ex-husband.

So, my child is 4. We got her at 6 days old. She was perfect and hit her milestones appropriately - although differently. She has sensory issues, and complex motor stereotypies which were the "main issues" when she was pre- two. She's four now. She is aggressive, destructive, has eating issues, along with lots of undesirable behaviors.

Lying has been a issue. But now, she told my husband I bit her. Now, earlier today, my 7 yr old bumped her lip with a knee while jumping on the trampoline. Zeda ran in (Anna was in the high chair watching the event.) Zeda was crying and I cuddled her and got the ice pack. Anna started screaming and crying that her own mouth hurt. I ignored Anna as I was tending to the real hurt child. DH came home tonight. They were up in the rocking chair rocking and she said her lip hurt. Then told DH that Mama bit her lip and flicked her because I hate her. This is a complete lie. I have been fearful since she was small that since she feels no pain- she would bang her head and we'd end up the ER with a major trauma and Id be blamed. But I didnt think she'd be accusing me of fake injuries.

I have to be very careful how I approach this because if she knows how mad I am at this event, she will likely do it often. I also want to say, she does not like me. She never has. She likes Dada. If Dada is away on business, then she likes me. She will only cuddle and love me if he is not here- and I dont mean while he's just at work. He would have to be gone for a a couple days. I am at a loss. I am heartbroken. The comment about me hating her- she tells me daily that she hates me. Im out of ideas. Im exhausted with trying to be a great parent to my special needs kid. She's not sick medically all her issues are social/ emotional/ behavioral. No one understands her - no one understands my parenting issues. Im screaming inside.

I have a weekend upcoming with no children, this will be a nice respite for me. We have also- as recommended by my/her therapist to do outings with the other kids excluding her to be able to have a good time minus the issues. - We do lots of things as a family including her and with her alone. Many events are just too overwhelming for her.

I also want to note that this is so hard on the whole family as the other kids dont get her "special needs" I have explained that her brain is wired differently because when she was in her belly mamma being made, the belly mamma drank alcohol making the babies brain connect in different places. They dont get the whole picture- they dont understand that when she breaks their things, steals... Or when she does her odd eye movements (self stimming behaviors), her full body stereotypies- (we call the "soothies") but it's getting to be very odd to see a big girl do these full body movements. When the kids have their friends come over- what do we- what do they say to these friends? Her diagnosis is not a normal acceptable diagnosis. It's hard too because she is adopted and this separates her even more by always having to mention the adopted part when stating her disability with others.

Two hours of encouraging her to take her 12 bites of food from the containers of a muffin tin and now she's off giggling...... Ive said this before- she doesnt duffer from FASD, WE- her family suffers from her FASD...

Help??

(I have no time to edit or spell check- she's off and I dont know what she's getting into- so off I go..)

Christine. Unschooling mom to Hollis, Zobey, Zeda, Anna, and Wednesday. We have a lot invested in this whole family thing with marriage kids and a mortgage. You don't just give up on the whole deal when it gets difficult.
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#2 of 16 Old 07-23-2009, 09:53 PM
 
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I am not sure what to say mama, but didn't want to read and not respond. What does her therapist say? Can you document this incident with them, so that you have a record that could be used later if need be? Are you getting enough support for yourself, so that you can be more there for her and for your others when need to be?

It sounds like a long hard journey for you, mama. s
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#3 of 16 Old 07-23-2009, 10:39 PM
 
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I'm sorry, not really sure what to say. I'm sure it is extra hard on you because she is adopted and causing problems and your other children weren't adopted. I'm sure that is a strain just itself. I'd suggest taking her to a child psychologist....even if they can't stop her behavior right away they can at least document things so if she makes claims of abuse in the future, the therapist could back your family up.
Or maybe start trying to videotape an incident...if she tells your husband that you hurt her.....videotape that part, and then talk to her in private and see if she will admit to lying and ask her why. Get that on videotape too just for proof in the future if she claims anything. Just from a former police officers point of view. From my perspective if a 4 yr old is claiming abuse, she would have to have severe injuries or at least some visible injuries. And as most officers know, sadly most 4 yr olds that are abused wouldn't tell anyone even a police officer because they love their parents so much despite the abuse and don't want to see them in trouble. So don't worry about that too much, they investigate things thoroughly before doing anything drastic like removing kids and arresting the parents.. If it's covered by insurance I would try and get the whole family into counseling together before she gets older and things get worse. Sorry I'm not much help.
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#4 of 16 Old 07-23-2009, 11:03 PM
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This must be so hard! I have 3 bio sons and one adopted daughter from Russia. She is not my special needs kid but she does have some "issues". I didn't have the issues you are dealing with but my daughter was adopted at 14 months and had a very rough transition. She was aggressive, to herself and my youngest son. She would bang her head, pull her hair out, bite him, bite me, scream for hours on end, wasn't potty trained till well over 4 and has always had major food isues. She hoards food and sneaks food and talks about food all the time. The food issues continue to this day.

I have had the support of an international adoption clinic. At one point they referred me to a psychologist who specializes in adoption issues. We only went once but she was wonderful! She gave me permission to not "like" my daughter at times and gave me practical advice on how to deal with some of her behaviors. Although an adoption specialist cannot do much about FAS, a good one may be of some help or may be able to point you in the right direction of another specialist. I didn't know there was such a thing as an adoption psychologist but it really was helpful.
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#5 of 16 Old 07-24-2009, 01:26 AM
 
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The best suggestion I can make is look into the nurtured heart approach by Glasser. I'm not dealing with the same diagnosis (my kid is spectrum) but some of what you mentioned especially in terms of her repeating what you don't like sounds so familiar. And it's not perfect but it's the best approach I know for these complicated kids. It was made for kids with issues like ODD and FASD so worth checking into at least to see if it helps. http://www.energyparenting.com/

I searched and found this link and it does mention it in relation to FASD (mid-page) along with other stuff:
http://www.come-over.to/FAS/parenting.htm
Maybe something would help there.

Not being in the situation of course I don't know how I would handle it. But reading here I *think* I'd quit explaining the FASD and adoption bit. Just her brain works differently should be enough for kids that age especially if they ask. For her benefit adding in that some things are easier and some things are harder might be nice. If it's going to help that simple will help. I think it's hard at that age for anything to help explanation wise. And I think the repetition of the stuff could indeed make the situation worse.

Does she qualify for respite care?


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#6 of 16 Old 07-24-2009, 04:12 AM
 
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I have lots to say but no time...I'll post tomorrow. Hugs for now!

Here's me I married then we had dd15 , dd11 , ds10 , and then and now we and I blog!
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#7 of 16 Old 07-24-2009, 09:44 AM - Thread Starter
 
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The first step to finding help is to define the issues. My head spins most of the time with her moment to moment issues, it's hard to have the clarity to break it down enough to define WHAT we need as a family.

I had a great night's sleep last night. My The baby slept through the night- she must have known I really needed it.

So, not addressing the lying and "taking from others" issues - a couple weeks ago, I chose 3 behaviors of Annas to improve. In our home we use the red, yellow, green technique. There is a sign on the wall with a red sad face, yellow straight face and green happy face. Our language is the same, "We need to stay in green." "I notice your body is in the red, how can I help you get in the green?" This pertains to everything. Its simple for Anna and she understands. Teaching her what her body felt like in the green was a bit challenging since she is always fast, loud, impulsive, all of her body is moving.... So, one night, just she and I went in the hot tub and I help her to float on her back and loosen all of her body while I sang quietly, "Anna's body is clam, her legs are in the green, Anna;s arms are in the green, The green feels like this, the neck and shoulders are loose and happy, now Anna is in the green...."

The three behaviors- Self -feeding real food, Keeping her pants dry and Using words are in the GREEN. Being fed babyfood, wetting the pants and screaming/crying/ babytalk are in the RED.

The baby talk thing is strange. When we go out and there are other people, Anna adds "y" to the end of everything and her whole voice changes. She literally turns into a two year old. If we are home, and my oldest daughter has a friend over, she speaks like an 11 year old. What's up with that?! Why is she doing this? Anna will start screaming like a banshee with no trigger. We were in the van yesterday to pick up my mom, I forgot my sunglasses-we were still in the driveway. I always forget things (I have 5 kids- I never forget the kids ) So, I turn around to make eye contact with Anna and say, I have to go get my glasses, they are on the counter, Ill be right back. She was fine. I go in the house and she starts screaming like something terrible has happened. I walked out (she's still screaming) and walk up to the van- she stops as soon as I touch the door. I open the door and she looks fine- like she wasnt screaming at all. I said- in a very monotone voice, "Were you screaming?" She tells me, "I dont know why." and she cries- and screams for 5 minutes until we meet my mother. Ugh. Might I mention she is very loud- earth shattering loud. If someone gets hurt, she always starts crying as soon as that person is being loved and bandaged. Sometimes Anna is the assaulter- sometimes she is not. If Anna is the hurter- how do I respond to that? Im not sure if she actually likes the attention that hurting someone else creates. But the person who got hurt always hates the fact that Anna is always hurting them. We are talking about throwing blocks at peoples heads, stabbing with pencils, pushing a sibling off the scooter, pushing a cousin off the trampoline, holding the cats neck, taking a heavy duty flashlight and swinging into her young cousin's face giving her a black eye for 2 weeks...... We arent talking about hitting with a hand....She has rage within her core. Then immediately following this is the cutest sweetest giggly lovebug. Any talking to her about the situation - she screams so that she doesnt hear the talker. If two people are trying to have a conversation, Anna makes noises either by banging or a high pitched sound she makes at a level just loud enough so that we cannot talk , we get louder, she gets louder.

Kids are awake and actively needing me- I need to cut this short. Ill be back later....

Christine. Unschooling mom to Hollis, Zobey, Zeda, Anna, and Wednesday. We have a lot invested in this whole family thing with marriage kids and a mortgage. You don't just give up on the whole deal when it gets difficult.
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#8 of 16 Old 07-24-2009, 11:12 AM
 
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It sounds like you really need some of those at the moment.

I don't have any experience with FASD so I apologize that I haven't responded to your posts before. I do have experience with adoption (I'm an adoptee myself) and it sounds to me like you have some adoption issues in the mix making things even more difficult. I recognize myself in a lot of what you posted and I do not have FASD.

I was also wondering if she is receiving any therapy for the sensory issues? My DS1 has SPD and some of what you are describing could be addressed by therapy for SPD.

Normally it irks me to no end to hear people mention that their child is adopted (obviously not meaning here) but I have to say, in your situation, I do understand the need to. FASD carries a lot of stigma for some reason and I can understand your fear that people will judge you unless you add that she is adopted. I think the key is to make sure that she does not hear you say it and is not made to feel "different" from the rest of the family.

If you want to chat more about adoptees, feel free to PM me.

Martha
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#9 of 16 Old 07-24-2009, 12:11 PM - Thread Starter
 
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kittynurse, it's obvious to the world that not all of our children were created from our bodies. The adoption aspect will always be obvious when we are all together as a family, that's' unavoidable. But I am determined to have a healthy family in all aspects. I am desperate and determined to find a path for all of us to travel together and be comfortable and happy doing it.

She does get therapy for her sensory issues. We do craniosacral therapy every other week and she is part of a sensory therapy playgroup (she's there now with DH.)

Christine. Unschooling mom to Hollis, Zobey, Zeda, Anna, and Wednesday. We have a lot invested in this whole family thing with marriage kids and a mortgage. You don't just give up on the whole deal when it gets difficult.
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#10 of 16 Old 07-24-2009, 12:24 PM
 
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OMgosh, I'm so sorry if I offended you it was not my intent at *all*.

I have to run right now but I sincerely apologize and will try to think of something more supportive to say when I come back.

I'm sorry.

Martha
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#11 of 16 Old 07-24-2009, 02:26 PM
 
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I dont have any knowledge of a parent of FASD, but as a teacher of Spec.Ed.---does your area have a preschool she qualifies for? Not only would that give you some time to 'regroup' and some respite, but also they would work on social skills in a group and individual setting. Often a social worker is part of the preschool setting on a daily basis and they could help reinforce positive home behaviors.

Does she have an IEP? FASD should qualify her under OHI and/or she may qualify for emotional impairments as well. Check out www.wrightslaw.com for more info on her/your rights for special education. If she is having that much of behavioral difficulties/eating difficulties/sensory problems she should be getting OT/PT/Feeding therapy through the school system. 504 is another option, but really it sounds like she needs an IEP from your description. They can also do a cognitive testing- some students FASD struggle with Learning disabilities and/or cognitive impairments.

Second, do you have respite care in your area? I know our area offers parents of special needs children respite. A certified, county screened person gives you a break for a few hours. For medical kids it is usually a nurse, for behavior kids it is a mental heath worker- etc. It may give you some moments to your self and help her build a relationship with someone else. Plus, if she does the lying/breaking/injuries--it will be well documented by a 3rd person. They can come to your house and let you go 'out' and/or around the house or they can take her on 'play dates' to park/zoo/etc to give you a break. Some do overnights--but not many.

I would also talk to your Dr. A good Pedi will do a full behavioral assessment and possibly offer some meds/additional therapy/support group/play group/etc.

In addition to the FASD effects you see- there may be more going on, as in a mood disorder. Many of the behaviors you describe are common to FASD though--the anger is not something I've delt with as much at school, but the lying w/o remorse and destructive behavior is common.

Last--when she gets 'out there' in behavior do you have a routine to follow when it happens? One of my DDs has SPD and the only way to get her' back' is to use a weighted blanket and a tight/small/quiet location (think hug/in her small bed/dark room- rocking chair, etc).

I hope things get better soon----4 is hard enough to deal with, add special needs and it can be a challenge!

KC
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#12 of 16 Old 07-24-2009, 02:55 PM
 
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First of all, big HUGE hugs to you! I can honestly say I know what you're going through. My son has ARND (alcohol related neurodevelopmental disorder). Much of what you described, is what we live with as well.
My son is 5. It's taken us to this point to get a solid diagnosis.

My biggest piece of advice to you is CHANGE THE ENVIRONMENT (not yelling, just stressing). Remember this is brain damage you're dealing with. It's not (for the most part) willful defiance. She is much younger than her age, so lower expectations. She will need constant supervision (as you already know). Have you checked out
http://www.come-over.to/FASCRC/

It is filled with info and helpful tips on parenting a child with FASD. It sounds like you have a good system in place with the red, yellow, green method. I would suggest that if that doesn't seem to work, then try differently not harder Our kids respond better to positive consequences than to negative.
What kinds of services do you have for her?
Do you have any professionals that specialize in FAS? If not, find one who does because all the suggestions from other professionals WONT WORK. They don't "get it". It's a really rough road, but just remember to take it one day at a time. Feel free to PM me if you want to chat. I can send you some more links for support groups and for information.

One more thing, STRUCTURE. Limit her free time. Set up a solid schedule and stick to it. The entire family will benefit from a hardcore routine. Our kids cannot deal with free time. They need to know exactly what's happening next. I cannot emphasize that enough. Free time= destruction around here

Gotta run for now but I'll come back tonight with more (((((((hugs)))))))

Here's me I married then we had dd15 , dd11 , ds10 , and then and now we and I blog!
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#13 of 16 Old 07-24-2009, 03:19 PM
 
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I'm sorry this is so hard. You are such a committed mom.

The link below is to the website of Diane Malbin, who I've seen speak. She's an expert in FASD and raised two children with FASD. She's very inspiring.
http://www.fascets.org/index.html

I'll also ditto the recommendation of the Glasser book.

Mom to a teenager and a middle schooler.

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#14 of 16 Old 07-25-2009, 12:07 PM
 
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Hugs

We have four adopted kiddoes and four bio. Our four year old son has FAS and our three year old has FAE and MD.

I suggest "Beyond Consezuences Logic and Control" by Forbes and Post. It is a new way to look at your child. to take every situation with a loving approach. Instead of making displine an oppertunity to fix the child you make it a chance to form unity.

Also I would never mention to children coming over to play that your daughter is different. It only helps ease your mind and does not serve her. Would you do this if she was 15? Everyone can tell my son is different when they spend a little time with him. He repeats everything and licks things. He walks into traffic right after I tell him not to. But I feel NO need to explain it to anyone other then close friends and then only privatly.

My son is a wonderful person. On a long car trip he was self stimming rocking in his carseat. We were all tired of driving and he suddenly stops and says "I like cake." Sometimes his thinking is perfect. We pulled the car off at the next stop for a snack.

When we went to the post office for just a quick trip to deliver a package he was happily walking along holding my hand. Then we turn the corner and see the line that will probally take 45 min. to come to our turn. He crumpled to the ground and threw a fit like a 2 year old. It was perfect. He did outwardly what I wanted to do inside.

He looks different and acts different. But it would destroy his privacy if I told everyone we met what his issues are. It is none of their buisness.

As for the lying. It is part of her nature. You really can't teach her not to. Do you still have caseworkers in your life? This could pose a real problem. As for her lying to your DH. You just need to come together and have him clear the stories she tells with you. Also don't ask her to lye. Don't ask if she ate those cookies on the countertop. If you se an empty package and crumbs on her face, don't ask.

The book I mentioned really helped us to see our kiddoes for who they are and not focus on their "issues."

Mama to 8 little ones by birth and adoption. S 14, E 12, G 10, C 9, K 7, N 6, R 5, Ch 3 and baby T 9 months
 

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#15 of 16 Old 07-25-2009, 04:06 PM
 
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I second Pat's suggestion for Beyond Consequences Logic and Control! That book along with anything by Forbes or Post is super helpful. It's also in line with AP parenting

Here's me I married then we had dd15 , dd11 , ds10 , and then and now we and I blog!
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#16 of 16 Old 08-20-2009, 10:36 PM
 
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I have three children with this condition. I have a fourth with different biological makeup so my issues with him are only as a child affected by his siblings.

I am well aware of the issues you raise as I've experienced versions of them in one form or another. Kids with FASD/ARND (fetal alcohol spectrum disorder and alcohol related neurological disorder) have brains which developed differently than those not exposed to these chemicals. The degree by which the kids are affected is a mixed bag. Two of my kids have the physical symptoms while one does not. Two are extremely bright while one has strong learning delays.

I am sorry the one person you spoke with was a mess. Not all parents of kids falling under the umbrella of FASD are looking for another shoulder to cry on without offering advice and idea exchange. I have a support system in caregivers, partner, friends, and medical/therapeutic professionals. I also have friends (though a smaller number) who have children like mine. This resource pool is great, but what is most affective is idea and technique exchange with other parents like me.

I don't know what state you live in or what resources are available to you. We've learned a lot through classes offered by Children's Home Society of MN and county education offerings. http://www.mofas.org/ is an excellent site to join and participate in discussions. I also have books which we've found helpful and can list them if you like. We also have a good school system which we work with closely to address each child's specific needs. And we have chosen medication for one child, none for the next, and the third we are on to a psychiatrist as we suspect bi-polar behaviors. All three have sensory issues are currently receiving OT, called vestibular rehabilitation therapy.

The oldest in our sibling group exposed us to our first FASD experience. Since our kids moved in and were adopted by us, we've become 'experts' in the bizarre and frustrating world of the FASD child. Our kids have different maturity levels than their peers. Their brains function different than their peers. They learn differently. They experience sensory input differently. They have huge impulse control issues and therefore have little understanding of cause/effect behavior.

People without knowledge of FASD parenting are of little help. Because our kids learn and experience life differently, and process information differently, and for many other reasons, we've even found traditional parenting methods mostly ineffective. I've even had mental health care professionals push me toward getting a social worker assigned to my kids to advocate for their needs. I've said "NO!". I AM the best advocate for my kids and don't need another layer between me and my providers. So much of what we do is a try/fail, try/fail, try/fail, and maybe try/succeed experience.

The biting, kicking, eating, bad behavior outside the home, shall I go on? Been there, seen that. Our biggest issue right now is with our four year old who is developing into a violent young man. He gets deregulated over some issue, and can't control himself. He destroys property, runs away up the street, hits kicks bites spits me and the other kids.

Sometimes I feel like it all is too much. But being an adoptive parent is a roller coaster ride on a train track. The journey is very important. You make move up down and all around, but you do make progress. The change in my 8 year old over the last 3 years has been amazing. I am a stronger, better parent than I ever expected. But it is hard, so very hard sometimes.
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