Tag: FAS Page 1 of 3

“He will never learn to tell time.” Parenting Tip #29

In Adoption, Educating Our Children, Family, FAS, Parenting tips

There is Always Hope

When you parent special needs kids and take them to doctors, psychologists and Neurologists, often you will hear discouraging news.

He will never learn to tell time because of his low IQ.
Get him velcro shoes because he’ll never learn to tie.
He will always be behind a year or two.
With his limited abilities you won’t be able to teach him like other kids.
He will never be capable of living on his own.
He will never hold down a job.
He will never see you as his parents, attach to you, or feel a part of your family.

I always accepted those statements as a challenge.

I walked out of evaluations with the attitude, “Bet me.” You guessed it – they did learn to do those things, and went on to learn all the basics.

Be careful of IQ (It doesn’t mean I Quit)

Another one of my kids who was assigned a very low IQ during their younger years has his own apartment and job at a grocery store. Others who had a rough start have jobs, drive cars, have relationships and speak intelligently – so much so that you need to get to know them before you know they have any disabilities.

Over-educated?

A few years after a depressing evaluation, I took one child to be evaluated at a children’s health center because I wanted to know if there were any programs that would help me with some specific issues. They had a great reputation in our county.

He was in in fourth grade and tested at a 6th grade level with a Kindergarten ability. They couldn’t explain how he knew more than he was “able to learn.” When I explained that I taught him at home, they told me that I had “over-educated” him and that there were no programs for a kids like him.

Hmm. So I took him home and continued teaching him until I knew he had all the basics.

Another one of my kids desired to live on his own when he turned 18. It was hard for him to watch his siblings go off to college and talk about their futures. Since I was concerned about him being out on his own, we found a supervised living program. After a few months he lost a lot of what I had taught him (personal care, housekeeping, etc.) so he moved into the dorms where he could be closely monitored.

He graduated from their college three years later and is doing fabulously.

FASD and Other Labels

Some who live with after shocks of maternal drugs and alcohol use (they are adopted, BTW) have learned to compensate using other skills to fill in the gaps.

Those who had trouble remembering information in subjects like grammar and history relied on memorization to get them through the tough subjects.
Homework folders and assignment pads helped with daily assignments and teacher communication.
The younger kids had older kids as partners to help with daily activities like chores and outside activities.
They used check lists, sticky notes and had accountability partners.
Our home was structured with a consistent schedule, rules and expectations.
We were always nearby and consistent in supervision and follow through.

We have taught our kids to live in spite of “labels”. FASD, OCD, ODD, ADHD, ADD, PTSD, TMI, EMI, dysgraphia, dyscalculia, dyslexia, Asperger’s, APD, PCE, RAD, etc.

Never, ever give up on your kids, accept doomsday predictions on their future abilities, or let numbers set the bar. It is good to seek evaluations but use the information as a tool, not as fact that limits your reach.

Shoot for the moon, but be content if you only reach the stars. It’s an amazing place to live.

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A Three Day Snapshot – Day 3

By Val Frania

In Adoption, FAS

Wednesday, August 26, 2009

Today he pulled the same thing at the CMH appointment. I knew there would be toys to play with and told him ahead of time that if there were little cars or legos he’d have to play with something else, as he’d been grounded from those for behavior, and that if you are grounded from something at home, you are grounded from it everywhere you go. They had both, but there was a whole cabinet full of other things to play with. He zero’d right in on the little cars, grabbed the bag they were in and when I said, “No,” and took them, he got ahold of one. I had to forcibly take it. I told him if he didn’t stop arguing and fighting he had to just sit on the couch in time out, and he began punching and kicking me. In some ways, as bad as it sounds, I’m kind of glad it happened right in front of the clinician doing the intake.

At dinner time, he was NOT going to eat his dinner (chicken breast stuffed with broccoli and cheese) because he thinks broccoli with cheese is “nasty”. He loves broccoli. We finally said if he didn’t eat it, it would be wrapped and reheated for every snack and meal until it was gone, and that he’d not be allowed to play outside before and after service tonight at church with the other kids. He must have been using his selective hearing for that part, right along with Manny, who had decided since Matt didn’t like dinner, neither did he, so his got wrapped up too. After dinner, I was headed upstairs to change for church and saw Matt putting his play shirt on under his church shirt and asked what he was doing. He told me it was so he could play after church, and I reminded him he was not going out after, only Allen and Ike would, as they had eaten their dinner. When I came back downstairs, both boys were in the kitchen with their dad finishing their dinner. So at least that worked out. They were fairly good the rest of the night.

Tonight during prayer time, my husband thanked the church for the men who have been helping me with Matt on Sundays when he can’t be there, and asked for prayer for Matt and for our family. Our pastor added that he would like whatever men are sitting anywhere near us on Sunday to do the same, just get up and take him out when he becomes so difficult and reminded everyone that Matt needs a lot of prayer, and a lot of love, not judgment, that he’d been badly abused and it would take time. He also said he’s already seeing some progress with him. I so appreciate this church, it’s the first church we’ve belonged to since moving here that I feel my kids are safe from criticism and where I had no one minute of hesitation about calling the pastor and his wife after the Sam’s incident to ask for prayer, knowing I wasn’t going to be judged as a bad parent. Unfortunately, we have had that happen in other churches, when Allen was younger.

Linda

A Three Day Snapshot – Day 2

By Val Frania

In Adoption, FAS

Tuesday, August 25, 2009

Unfortunately, that repentant subdued attitude did not last into Tuesday. Matt was angry that he was still grounded from his legos, sports cards, and little cars. By the time Marc left for work at around noon, he was ready to gear up into a rage, which he’d held off until then. I ended up putting him into time out on the couch and sending all the other boys out to play, which made him madder, but I’m tired of them hearing all of this and mimicking the attitudes and sometimes the language. He escalated to the point that he was attempting to bruise himself so he could say I did it, at which time I ended up holding him restrained. I’m not strong enough to just get him in my lap and restrain him that way like my husband can. The only way I can keep him from hurting himself or me is to get him on the floor in front of me, facing away from me, my feet holding his legs apart so he can’t kick me, with my hands holding his arms up so he can’t hit me or pinch me. Unfortunately, he got hold of my hand with his teeth, and held on until he drew blood. I told him he’d not be outside at all that day, which as you can imagine went over just great.

Finally, I had to get dinner, so I just did quick and easy spaghetti, after warning him he better not leave the couch. He insisted he would not eat supper, because I said he had to sit in his dad’s place at the table by me, not next to any of his brothers, because he’d also both threatened them and tried to hurt them earlier in the day. He also informed me that he would not take his bath, because he knew he had an appointment in the morning and also church the same evening. Matt wanted people to think he didn’t get bathed. By then my husband had called on his lunch break, and said he’d watch for an offer of signing out early, they didn’t end up offering it early enough to help me that night. He said to tell Matt if he refused to get his bath, that his dad would wake him when he got home from work and give it to him and that he (Matt) would NOT like it a bit. He finally agreed he might eat a LITTLE (he ate 2 helpings), and he’d have his bath if he could play after. I told him if his bath was quick he might have 15 minutes before it was time for all toys to be put away for the night (8:30 in our house). He wasn’t happy, but I did point out that he COULD have been playing all day, including outside.

He did get his bath, and sat quietly on his bed while Manny got his, because I wouldn’t let him downstairs with just Allen & Ike; I didn’t trust him not to go off on them again. He got his 15 minutes to play, got his night time medications, then the nightly routine of TV time to relax enough for the meds to work, and in bed by 10:00. They are up that late because their dad works late, an hour away, so he and I rarely get to bed before 2:00 a.m., and we really don’t want them up at 5 a.m.

A Three Day Snapshot – Day 1

By Val Frania

In Adoption, FAS

I have a long time friend who recently found me on Facebook. We reconnected after about ten or so years. We originally met during our old adoption advocacy days when we lived in Flushing. Our adoption support group was instrumental in bringing her and her first son together by adoption. I will call her Linda. This is day one of three days in the life of her newly adopted son, Matt. She currently has four sons.

Monday, August 24, 2009

Today I had no choice but to take all the kids to Sam’s. I had to pick up a prescription that could not wait. Matt wanted me to let them wait in the car, which I have allowed if I am just running in somewhere for a minute or two. But today I knew it would be longer, so I said “No,” and that they would have to come in with me. First, Matt ran away in the parking lot and Allen ran and got him for me, which set him off against Allen now, too. We went in, and by the time we got back to the meat coolers he was working himself up deliberately. You can actually see him doing it; he clenches his fists and starts breathing harder and faster to work up a good rage. I ended up having to hold him against the cart with one arm while pushing/steering the cart with the other, because he’d started running up and kicking Allen as hard as he could. So he started kicking me, in between pressing his foot on the wheel so I couldn’t move the cart. I ended up having to hold him against the cooler to stop him trying to hurt me, Allen, or himself.

We made it to the pharmacy counter and had to wait a few minutes for it to open back up from lunch break. A lady, who’d been shopping back by the meat dept. and tried to speak with him when he was doing all this, followed us. I saw her come around the corner and duck back when I saw her but didn’t think anything of it at the time. She apparently followed us out and took down my plate number and called 911. Not 10 minutes after we got home a county sheriff’s deputy was at the door with a worker from FOC. To avoid speaking with them, Matt ran to the back of the house and out the back door, but they got him to stop. I told her what happened, and Matt admitted all. She came down squarely on my side, and told him he has to obey me, that I have the right to discipline him, and that she thought he was very lucky to be where he is (she had already asked about his background).

He told her he knew he was lucky, but that being told, “No,” makes him “want to get mad and hit people.” So, I’ve joined the ranks of parents who will need to document, document, document, I guess. She said this was NOT going to CPS; she saw no reason for it. It looked to her like that lady who called 911 was a nosy woman who had no idea of the actual situation or circumstances, and apologized for having to come here especially when it was very clear I’d done nothing wrong. The whole cops at the door for what he had done scared him though, I think. After that, he apologized to me and then to Allen and couldn’t do enough for either of us for several hours. He and Manny have an appointment tomorrow at CMH to get them services. Here’s hoping for at least respite time, huh?

Linda

Do you know a FASD/RAD child?

By Val Frania

In Adoption, FAS

Click here for a pdf that explains RAD (Reactive Attachment Disorder) and suggests how to deal with a child that may have attachment issues.

Click here for a pdf with some suggestions on how to handle a teen with FASD (Fetal Alcohol Spectrum Disorder).

Note to family & friends: Read these to better understand some aspects of our family!

Gertz’s Pile of Ideas

By Val Frania

In Adoption, FAS

On another adoptive mom blog, I found an article about a magnetic sleep technology that got a special needs little girl off sleeping pills. Some FAS kids have difficulties with sleep and need medication in order to fall asleep and achieve and sustain REM sleep. This is interesting and worth looking into if your child has this difficulty.

“On January 1, 2009 I made a commitment to find an alternative to sleeping pills for Ellie. She has needed to take a sleeping pill every night for 3 years to get her to sleep. The guilt I felt about this ritual was inconceivable. Ellie is 6, so for half of her life, I have watched her struggle in a drugged haze to get her teeth brushed before she conked out in a drug induced state. That little body would shudder as it passed into a chemically induced state of fake REM and every ounce of natural therapy I would incorporate into our daily routine was lost … to read more click here.

Ambiguous Loss

By Val Frania

In Adoption, FAS

I ran across this note on a FASD e-newsletter. I thought it did a good job of explaining something I’ve never been able to put into words.

I have come to believe that the real difficulty for me as a parent of children with FASD is found in exactly that, the ambiguity.

Pauline Boss, PhD is a therapist who is known for her work in the area of “ambiguous loss”. When loss comes in the form of death the loss is definite and clear and there are rituals and compassion for the grieving. Ambiguous loss is less clear and may be more difficult on some levels to live with. Boss explains, “With ambiguous loss, there is no closure; the challenge is to learn to live with the ambiguity.”

When I was a little girl playing with dolls I imagined that I would be a loving and competent mother someday to my children. I never imagined that I would question my decisions or my ability to care for them or keep them safe from harm. I never imagined that other people might question my abilities or blame me for the way my children behaved. I never imagined that there would be days when I would feel helpless and overwhelmed and afraid. And I never thought I’d mourn a little on each birthday as I watched them blow out their candles, knowing that the magic age of adulthood would come much too quickly for my children.

But I’m learning to live with the ambiguity. Connecting with other parents of children with FASD helped tremendously as it was through those connections that I learned that the feelings I had on those difficult days were normal and those concerns I had about my ability to care for my children or keep them safe did not make me a bad mom, they caused me to develop the skills to be the kind of advocate my kids need. I replied to the mom who had emailed me intending to tell her exactly that, but I wrote only two words. I understand.

~Kari Fletcher, MOFAS 2009

Exhausted and Bleeding – Part 4

By Val Frania

In Adoption, FAS

A couple of weeks ago we attended a meeting in Lansing with some key people regarding the issue of adoptive families trying to access residential placements or theraputic foster care using their medical subsidy for funding through DHS (Department of Human Services). This was the second in a series of meetings that addressed the problem of families in crisis being charged with neglect. MI Representative Alma Wheeler Smith attended the meeting along with her assistant, 4 adoptive families in crisis, Atty. John Lewis, 2 DHS personnel, and a representative from the legislature. At that meeting Atty. Lewis requested a moratorium for the families present, including ours. We were hopeful that our need to immediate help would be met. We again found ourselves needing in crisis shortly thereafter, but had heard no promise of relief other than through the grapevine. We thought we’d be stuck in the neglect charges arena again, but due to a quick phone call to the Dpty. Director of DHS from an adoption compatriot, our needs were temporarily met for our son with only an hour to spare.

The problem we are encountering now is the uncertainty of the system. Once you receive approval for residential, you must agree to allow the child to return home whenever DHS decides – whether or not the child is ready. Oftentimes it is just down to a question of funding. To keep costs down, funding may be withdrawn without considering the needs of the child. This is how many families come to be charged with neglect. They refuse to let their child back into the home because they fear for their family members. All they are doing is requesting DHS to either extend the residential placement or find a therapeutic foster care placement (trained foster parents with no children in their home) for the child. In my book, any parent who spends hours pleading for help for their child has already proven they are a parent who seeks to provide for the needs of their child. Yet, in Michigan, parents who ask for help from DHS in the form of alternate placement often must be charged with neglect in order to get the needs of their child met. It’s one of those ridiculous glitches in the system that ends up destroying families.

I know of a couple who considered divorcing, not because they wanted to, but because they needed to provide a safe home for their children with one of the parents, while the other suffered charges of neglect – for refusing to take a dangerous child back into their home. Protective services had threatened to take all of their children during their standoff. It’s a pretty common occurance, to use such a power play to keep adoptive parents in their place. In the end, the parents signed off their rights in order to save their family from being destroyed. How’s that for DHS’s primary goal of family preservation?

On our medical subsidy contract, it clearly states that medical subsidy payments are made in order to provide and obtain services necessary to achieve or protect the child’s adoption – based on the needs of the child. How on earth does that translate into neglect? Like MI Rep. Alma Wheeler Smith said, we need to redefine the word “neglect” [for DHS and the Legislation]. I have great respect for Rep. Smith, for she has taken time out of her busy schedule to help adoptive families. Her advocacy work, along with Atty. John Lewis has made a difference in several adoptive families lives and probably will pave the road for system change. Too many adoptive families are not finding the help they need when they run into trouble with their difficult children. They are being charged for neglect when all they want is a safe, appropriate solution for their kids. Until it happened to me, I had no idea what was going on. Please remember to pray for them and the changes that need to be made in the system and legislature.

Exhausted and Bleeding – Part 3

By Val Frania

In Adoption, FAS

As I said in part one, we’d tried to access post-adopt services but ran into a road block that seemed too large to overcome. We had used Christian residential, boy’s homes, for two years but were not able to use them anymore, so we turned to the state for help. We were told they would fund a state approved residential for only 30 – 90 days and that it could take weeks to do the paperwork and make arrangements. This seemed completely ludicrous to us, since we’d used two private ones for over two years and seen no improvement in behavior, how could the state do any better in 30 – 90 days?

At that point we were told that if we didn’t accept the state’s decision to limit residential due to funding issues, we’d be brought up on charges – charges of neglect! We were completely appalled that this was what we were offered when we asked for help. When we told him this plan was totally unacceptable and we would not agree to it, he suggested we cut to the chase and just start the paperwork to call Protective Services in and charge us with neglect! We told him we’d get back to him and hung up. There was no discussion, suggestions, or an effort to find a way to work something out that would benefit the whole family. Our eyes were opened to a system that was more interested in saving money than the lives of the children or their families that try so hard to meet the needs of their adopted children. After talking with other adoptive families and a lawyer that had been working with families who were similarly charged, we decided we were going to ask God would to preserve us as we continued on our quest for state help – even if it meant we were charged. Since the law requires that adoptive parents be charged with neglect in order to get services for their child, we knew the ax might fall on us next.

One parent who adopted the first FASD child back in 1973, advised us to go forward with asking for residential and see what happened when the funding was withdrawn. We didn’t even have to wait that long. Because of circumstances beyond our control, our number came up sooner than the original 30-90 days we were expecting. We found ourselves in the middle of charges with lawyers, protective services and a judge. Through the years we’d experienced many things, but this was a new one even for us. We were very fortunate to have the ear of several people who were experienced in this area and had connections to those in charge at the top of the DHS ladder. We also were able to seek the help of a lawyer who was well versed in this type of situation and already had been working on a similar case. Fortunately he didn’t require a retainer for his help – we’d really been in trouble! As a rule. adoptive parents of tough kids tend to have empty pockets and we’re not the exception that that rule!

Long story short, we pressed DHS to give us immediate help when we were in serious crisis and found ourselves charged with neglect the next day complete with a court hearing that we missed because we weren’t informed. Fortunately it was postponed, which gave us a few hours to seek help from our experienced allies. In just one day, we met with DHS, started the paperwork necessary for residential placement for our son, met with the court appointed lawyer, talked with half a dozen workers, had our sons interviewed by the local PS worker, and got the charges dropped. We don’t know who exactly was responsible for getting the hearing dismissed and the charges dropped, and we may never know. But we do serve a sovereign God who can do anything and between Him and whoever He chose to do His work we were rescued! DHS had even gone so far as to lump all our boys into the petition of neglect, using the typical scare tactic, “If you neglect one, you must be neglecting them all, so we’re going to take all four.”

I met an adoptive mom a couple of weeks ago who told me that she went through the same thing, only worse. She was told that it would be easier for her to move out her “good” children and take back the difficult one and that her adoptive child wasn’t like a puppy that you can just dump off anywhere when you want to get tired of them! This mom has demanded residential for her son because he physically attacks and tries to kill his brothers whenever they are in the same room together. When she was told he had to come back home due to his funding being pulled, she was also told that if any of her other children were hurt by this boy, she’d be charged with neglect. She is in a lose/lose situation. I think it’s pretty obvious to anyone who hears her story that she has good reasons for not wanting that child to live in her home any more, don’t you? This poor lady has mountainous lawyer fees, multiple charges of neglect, and has been reduced to a frazzled, worn out mom. I don’t know about you, but it is pretty clear to me, especially since I’ve been living it, that this ought not to be going on. These are families who opened up their home to adopt kids who had no mom and dad. It isn’t right that they should have to fall on the sword to get help when a child is too hard to handle in a normal family setting.

To be continued…

Exhaused and Bleeding – Part 2

By Val Frania

In Adoption, FAS

Speaking specifically to the FASD label (Fetal Alcohol Spectrum Disorder), I have parented three types of FASD kids, two of which are managable, one that is not. My categories certainly are not scientific – they are only based on personal experience.

One is the confused, struggling child who has trouble in relationships, school, and every day living skills – they have trouble understanding “cause and effect.” They are very frustrating to live with but are managable for the most part. These are the ones who make the same mistakes over and over and don’t think before they speak or act. “I don’t know,” comes out of their mouth more than anything else. Though you have trouble reasoning with them, they pretty much only hurt themselves in their habit of going from one negative experience to another, never really connecting the dots. When this child meets the Savior, they immediately see their sinfulness because they’ve known all along they are empty and sinful. They will always struggle with spiritual growth because they lack the ability to sustain a thought for any length of time. These are the kids that are often seen by others as having a “big heart.” They are very good at putting on a “show” for others. According to the Bible, they could be categorized as “simple.” These kids are not normally dangerous to the parent, though they would be the ones to complain about how mean the parent is and during times of anger expressing how much they hate the parent. As long as things are going well for this child, they can be very amiable and easy to live with.

The second is the one who live their life with a careless abandon that often results in running over everyone in their way. They’re not purposely attacking anyone, they just are running at high speed considering only their needs and opinions. They are either highly excitable or tend to be passive agressive. These are the type that say, “I forgot,” translated, “I just didn’t care.” It’s hard to reason with them because they “just don’t get it.” These kids can be very shallow and cause others to shake their head in disbelief. The school of hard knocks is usually the only way they learn to live by a set of standards and it’s only out of self preservation. It can take them years to manage their life in a way that they can live peacefully and stay out of trouble. They tend to be very self absorbed and hurt others by their lack of consideration. In their world there are only two people – themselves and the person they want something from or they consider is in their way.

When these children experience spiritual regeneration, you see a marked difference in their understanding of God’s expectations and standards of right and wrong. All of a sudden they understand their focus has been wrong but feel powerless to change. These are the children that are often seen by others as being “live wires,” “drama queens,” or “pouters.” Most people can pick them out of a crowd as being a trouble maker. The Bible term for this child when they are out of control is “rebellious.” These children can be dangerous to the parent simply because they tend to blame others for their mistakes. To cover up or explain their poor decisions, this child may tell others around them that the parent was abusive and will go so far as to call up the authorities to make such claims in order to soothe their conscience. They have an overwhelming need to have others’ approval. Later when confronted over this disloyal or dishonest behavior, they will usually lie about it or explain it away with the excuse that it was during their “bad” time but they know better now.

The third category of FASD children is the type that is causing adoptive families to fall into peril. I believe Satan is priming his Last Day’s army using this third type. They are the ones with no conscience. They can stare you in the face and tell you they didn’t do something even though you are holding the evidence right in front of them. They set people up to get hurt and enjoy watching the pain they’ve inflicted. They are right and everyone around them is wrong. They will keep going in their self deceit until either they, or the one standing in their way of what they want falls and they really don’t care which one it is – them or you. They can rise to any occasion and put on any face that will get them what they want. They think they are tougher than everyone else and are in perfect control of their actions when it suits their needs. They truly believe every false word that comes out of their mouth.

angry-teen The moment this child realizes their physical dominance, the end has come in the parent’s ability to control this child’s behavior. There is no pliable heart that can be won. These are the kids who may eventually be labeled “sociopath” and will probably end up in jail. The Bible calls these children, “scorners.” In their mind,they are the center of the universe and everyone ought to serve them. All of their bad behavior is written off as justified because they believe they have been unfairly treated. They only remember the discipline, not their behavior that warranted the discipline. Not only will they tell others they were abused when they were not, but they will gloat to others that they “got Mom and Dad in trouble.” These children are very good at twisting the truth and telling it in a believable manner. They are very confused and deluded individuals who can be a danger to anyone that gets in their way.

There is no way anyone can know which category an alcohol exposed child will end up in if they are adopted very young. Adoptive parents go into the parent/child relationship trying to meet every need of the child and sometimes it just can’t be done. Often the families with these type of children feel very isolated because the behaviors are so extreme it takes every ounce of their being just to manage them. Constant supervision and trying to anticipate every move is very wearing on a parent especially if they are feeling condemned by others. It is a very tough position to be in. A parent wants to know that they have been successful in their child rearing efforts. To many, parental success means seeing their child grow up to be a strong, successful godly adult that aspires to change the world with their presence. To many adoptive parents of these very difficult children, success simply means both they and their child lived through the growing up years.