Tuesday, October 31, 2017

Dysmaturity - Extending The Toddler Years - Living With FASD

Dysmaturity means my children remain cognitive, emotional and social toddlers while their physical bodies continue to grow and mature. Their abstract thinking is still in toddler range while their verbal skills are several years ahead of their peers. 

This means my child is not safe in public because he will not stay with me, but he is too big to sit in the shopping cart while I am shopping like he would if he were a toddler. He is supposed to hold onto the cart but when something distracts him, he forgets and goes to investigate whatever has caught his attention. If he see's something he wants and I say no, he is likely to get grumpy, throw a fit and refuse to co operate and it isn't socially appropriate to physically pull your almost ten year old through the store. I have often wished I could scoop him up and carry him, although at 85 pounds that isn't possible. My daughter on the other hand will throw an all out screaming fit, which doesn't look much better! 

When we go to the library for instance, we review the rules before going inside: use indoor voices, stay with mom, no fighting. They know the rules but when they become upset, which they always seem to do, the rules are quickly forgotten. The answer seems simple, don't take them to the library. But they love books and they love reading, plus I like going to the library.

We still fill their plates at mealtime because judging how much they can eat is too abstract a concept for them. I didn't think about it until I watched a friends child fill her plate with appropriate amounts of food and it struck me that although older, my child hasn't mastered that skill.

We have to monitor our son's interaction with other people because he has no sense of what is acceptable or even what is appropriate. However we have been noticing that some people automatically speak to him on the level of his comprehension versus his verbal ability. Interestingly enough, when people talk to him like they would to a toddler, he can carry a conversation and doesn't become nearly as overstimulated. Lia on the other hand can carry on conversation correctly but she struggles with commands. They have to be given slowly, with few words and she does best if we give her several seconds to comply. 

Joseph would run through the house giggling and bouncing off furniture when excited if we wouldn't keep him by our side. While it looks out of place for a ten year old to do that, it is typical for a toddler. The biggest difference is that he has the height and muscles of a much older child and can cause damage that a toddler couldn't. Lia will do the same thing. She loves jumping on the sofa and doing flips on it. Again, typical for a toddler, not so much for a 6 year old.

Sometimes I get incredibly frustrated because I feel like I am constantly running after my children and cleaning up messes such as tubes of toothpaste squeezed into the sink, piles of thread pulled from clothing, broken toys, shredded papers, shampoo bottles emptied into the toilet and the like. But the reply I received from my last post entitled No Boundaries, put it all in perspective. This is dysmaturity, my children are toddlers only bigger, no wonder I feel like I have toddlers, I do!

I know I have shared this chart on other posts but I find I am forgetful and a reminder is always good.

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Monday, October 30, 2017

No Boundaries -Living With FASD

No boundaries is one of our biggest struggles with two of our children at the moment. They have no sense of what is off limits, even though we tell them time and again.

Due to needing Dean or I to monitor him at all times unless he is playing in his room, Joseph doesn't get into as much trouble in this area as Lia does. We put an alarm on Joseph's bedroom door which greatly cut down down on the night time roaming. I do need to be aware of what he might get into if I send him on an errand. I can't tell him to put something away in a siblings bedroom because one never knows what he will touch or take. He isn't doing it to be naughty but because of his lack of understanding concerning boundaries, he takes what he wants....and gets furious when confronted.

Miss Lia on the other hand, is in to everything! Glue, tape, candy, gum, chap stick, stickers, trinkets....they all disappear if she is around. She likes it, so she takes it. I find stashes of "stuff" everywhere and anywhere. If I would keep her in line of vision, it would cut down on this, but I have a hard time watching two children all the time. I don't worry that Lia will get into something and hurt herself like Joseph would, so it is easier for me to let her run and then clean up after her.

Our children are not allowed in each others bedrooms without permission but somehow or another Joseph and Lia find themselves wandering through their siblings rooms. In their minds, everything is theirs.

Not understanding boundaries means they don't understand personal space or what is socially appropriate. Lia will still climb on other adults, beg others for snacks, throw fits in public and such. 

Both Joseph and Lia don't know when enough is enough, teasing someone is fun but only for so long and when the other person is tired of it, you stop. They don't get that which makes for some interesting interactions. 

In their minds anyone and everyone is simply a friend they haven't met. Stranger danger is totally missing in their vocabulary so teaching them about personal space is impossible - with strangers and friends alike. 

I received this reply from someone who has FASD. It was too good not to share, so with his permission, here is his response:  Ahhhhh..."When dysmaturity of the brain rears it's confusing head"... I hear what you are saying. Totally 100%... I never knew a 'stranger' until I was older, myself. Hopped into cars, walked away with 'new' people... I get it.

From a purely develop
mental standpoint this illustrates how the different development speeds of various brain domains can affect our lives.
Toddlers live in a "me" centered world... that is how they cognitively see the world... all about them. From their experience mom/dad feed and care for them and they are free to roam their world. They do not realize it is a shared world at this point, their brain has not developed to the point where they can think "outside" where they are in that moment.
We often get stuck in that moment... and our brains do not realize that there IS an outside world yet... things just *appear* as if by magic... and they must be there for us. Why else would that be in my world?

So... fast forward to the child with FASD who may cognitively dysmature.... mature in other areas, but not getting things like personal space, ownership of objects and other abstract ideas. It does become a problem... toddlers are limited by mobility for a long while, we are not. Thus the challenge.

This level of cognition is bound to grow through time as the children's world enlarges, both in reality and in their own brains.... but that can take a while.
We just develop in our own time... and that's hard to understand for many people... including us. We often don't know "why" we did it... but we did.
It's bound to come one day... hang in there. 

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Tuesday, October 24, 2017

Constant Supervision

What do you do when you have several children who behave like preschoolers emotionally and you average 2 appointments a week? This is one of the major downsides of homeschooling...all my children are home and my three youngest all need me to supervise them constantly.

So this morning I had a dentist appointment but my middle two were a bit of a handful. Joseph wasn't thinking coherently -Dean thought perhaps there was another eclipse as Joseph hasn't returned to baseline since the last one. Kiana is in the midst of another PANS flare, at least that is what I think it is. She had a loose tooth and other moms have talked about the mental/emotional deterioration that can go along with that. I couldn't take all three along since two can't be in the waiting room together unsupervised, neither did I want two in the room with me while I was having my mouth worked on.

I gave Joseph a pep talk, told big brother what to do if things went south and gave dad a heads up that he would be on call. Kiana took her school work along and I took Lia with me, thinking she would enjoy watching me get my tooth filled. Everything was fine for about 5 minutes then Lia realized no one was paying attention to her and mom was slightly incapacitated. Things went downhill from there. She went out to the waiting room to Kiana and I heard them laughing hysterically, shouting, arguing and toys being tossed. I was on pins and needles and to make matters worse, they kept messing up and had to drill then refill my tooth three times!!!! The dentist assured me that the girls weren't bothering her but I knew what they are capable of and I was growing more concerned by the minute. 1.5 hours of trauma for this mama and we were finally ready to leave!

Thankfully the boys were fine at home, they got their school work finished and were enjoying some free time. 

Someone recently asked me if the disabilities associated with FASD only show up around school age, as that is when our children began struggling. I thought about that and decided it becomes a problem then because at home we make boundaries and put supports in place to help them succeed but out in public or at school those things aren't always readily available. 

At home I always know where my three youngest are. Here of late they all needed to be in line of sight because they cannot make good choices without an external brain to guide them. I don't realize how many supports we have in place until we are away from home and it is obvious that they are unable to cope. It makes for some rough days but thankfully they don't always have bad days all at once.

So how do you all do it? Did you personally train someone to babysit? I don't go anywhere other than the absolutely necessary appointments but somehow it still seems as though I constantly need a sitter. 

Friday, October 20, 2017

A Busy Week And A Fun Family Day

Life has been rushing on by at an alarming pace. I think homeschooling makes the days go by faster since our mornings are devoted to school. Last Friday the children and I combined school work and apple sauce making. Kind of makes a complicated, sticky mess but we were finished with both jobs by lunch time thanks to willing helpers.

Kiana, Joseph and Lia kept the sink filled with apples and ran errands for me.

Thanks to COBYS and SWAN we enjoyed a day at Cherry Crest Farm yesterday. The weather was beautiful and the children loved having dad along and I loved having another adult along to keep an eye on everyone.

Feeding the goats

Lia and Joseph standing on top of the straw tunnel.

Inside the straw tunnel.

Lia made a new friend!

Crawling on the "spider web."

Hang on, Kiana!


Strasburg Railroad goes through the farm.

Dean had to go in to work for a few hours. When he came home we went to Plum Creek Farm for ice cream. It was too cold to be eating ice cream but we really wanted to try their Pumpkin Spice ice cream so we endured the shivers! The ice cream was delicious!

Lia skipped the ice cream and ordered french fries instead

October is "dentist month" at our house. Joseph had an appointment on Tuesday and I had one on Wednesday - a make up for last weeks missed appointment. You can read about that episode here: An Almost Tragedy.

Taking selfie's with mom's phone to pass the time.

When mom and dad stay up till all hours of the night calming a sibling, you just might fall asleep on the couch! 

We are having some good days with Kiana, although the hard ones are still in the majority. Someone mentioned the other Sunday that I stayed in the service all morning, something that hadn't happened for months thanks to Lyme. That comment was a good reminder that things are getting better and I need to focus on those times. Today is Kiana's 10th birthday. I will admit I was apprehensive because birthdays are major triggers for our children. However we have had only one "episode" this morning, leaving me feeling grateful. Now I need to go bake a cake and wrap a birthday gift!

Thursday, October 12, 2017

An Almost Tragedy - No Cause And Effect - Living With FASD

What a morning! I had a dentist appointment to get my teeth cleaned and thought since it wasn't going to take long, I would leave Joseph home with Tristan. They had their school work to do and typically if it is just the two of them, they act like men and do fine.

When it was time to leave for my appointment, Tristan was outside helping someone who had stopped in, so I told Joseph to grab his boots and get in the explorer. I planned to take him out to Tristan where he could sit and watch what he was doing. Except that Joseph didn't have any socks on and he NEEDS socks. I told him he would be fine this time but he screamed and kicked the explorer door till it rattled saying it wouldn't be fine! I drove back to the house instructed Kiana to run inside and get his shoes so he could go along to the dentist. That infuriated him and as we were going down the drive he opened the door and tried to jump out. I quickly pulled over and turned on the child safety lock (he never sits beside the door for this, and other reasons). As we were going down the road he threw his shoes at me and declared he will not go inside with me. My brain finally kicked in and I realized that I needed to cancel my appointment otherwise we would have a very unpleasant scene at the dentists office. I could envision police, CYS and all manner of unpleasant things.... paranoid? Much!

When he realized we were turning around, Joseph thought I could just take him outside to Tristan and when I said I won't, the rage came back with a vengeance. So I am back to being a stupid, old lady who is mean and wants to mess up his life. I made myself a cup of cappuccino and am sitting here regaining my equilibrium.

I told Joseph that if he would have jumped out the door, I would have drove over him and he could have died. He looked at me and said, "I don't care, I wanted to go with Tristan!" No cause and effect...from now on he sits in the back or the safety locks are on at all times!

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Monday, October 9, 2017

When Parenting Is A Struggle - Living With FASD

Sometimes I long for Joseph to be normal, if for no other reason than for my own selfish desire to no longer have to have my brain always working overtime to keep him safe and regulated. I get so tired of parenting a child who will never grow up to be independent, a child whom I love but who exhausts me daily with his inability to follow directions, who has the ability to drive his siblings up a wall with his silent harassment.

One child recently said, "I wish Joseph would just act normal!" Dean replied, "He isn't "normal" like you and I, so how can he?" What makes it really hard is that it looks and sounds like he has it all together, but his actions show there are some major disconnects going on. 

I get tired of constantly directing, redirecting and then following up only to find, he still didn't follow through with what he was told to do. I know it is a processing problem, but it looks and feels like defiance....and he is smart enough to use this as an excuse for times when he doesn't want to do a chore.

Everywhere we go, we have to make sure we have a place for Joseph, will it overstimulate him, will there be a crowd of people, will the people understand and accept that we have firm boundaries for him for a reason? A simple lunch away set off an hour of screaming, throwing blocks, shoes and toys and ended with new dents in the walls. 

I get so weary of him riling his siblings just to get a response out of them. Only to go into a rage when they get upset because, "I can't play with the others and I have such a boring life!"

I feel so smothered by his need to always have Dean or I by his side to guide him through each moment of each day only to have our vigilance undone by a moment's inattention on our part.

I get tired of being screamed at, lied to and manipulated then having to figure out if he was accountable for his actions or if his brain was on overload and he was unable to control himself. Regardless of the reason, I feel the same frustration but I have to keep stuffing it back down because if he senses I am upset, he escalates.

And underneath is fear because he is only 9 but some day in the not so distant future he will be bigger and stronger than I am. Then what? Who is going to physically remove him when he becomes overstimulated and begins tossing things? Who is going to keep him in his room to calm down? Who is going to keep his siblings safe? Who is going to restrain him when his anger gets out of control? 

I know all about the dysmaturity, processing disorders etc behind the actions but when you live with a someone who appears to intentionally irritate and provoke his family, it can be very hard to show grace. I thought we must be unique in this problem until I joined FASD support groups and found that this is often a universal struggle for families. I often feel guilty for struggling in this area, after all it isn't his fault, he didn't choose to be this way, but I find continual stuffing of ones emotions isn't profitable either. 

What do you do when you feel smothered and respite is not an option because no one understands the need to maintain your child's boundaries to the full extent? 

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Saturday, October 7, 2017

Claiming My Circus

October always brings back memories of Braden, as this is the month the ICPC paperwork went through and he could move to his new family. As time goes on we tend to forget how hard things were and grief on a new level sets in.

I was feeling rather defeated yesterday so I burned some candle's to brighten the day.

Tristan gave this candle for my birthday

Flowers from a friend

We have bunnies once more! They are cute when they are little but like all animals, they grow up and the cuteness disappears.

I bought a Go Fish game with the alphabet on the cards to help Lia with her sounds. Some days she can put sounds together and read words, other days they may as well be Greek.  I will admit seeing her on again, off again learning ability took some accepting because I know what is behind it.

Kiana had a rough week again. The other week she had a crisis and we realized we need to keep her talking to keep her from getting so low. Easier said than done as getting her to talk brings on floods of  tears and rages. We did pretty good for a few days then slowly slacked off and guess what happened? Down she went! It was building up all week and threatened to erupt on Thursday but we went to Grandma for lunch which forced her to get on top of things. Yesterday she spent the day huddled in her blanket because I couldn't get her to talk. Because of her issues with me as her mom Dean can get her to talk much better than I can. In her mind, unreasonable though it may be, I am the source of her troubles. Last Saturday it took till midnight till she finally gave in and told us what we really going on. Last night it only took a little over an hour so maybe we are making a little progress! She keeps saying, "I wish I could feel good again, I want to be like other girls!" 

Kiana had an appointment with her Lyme doctor on Friday and she said she had recently attended a Lyme Summit where they mentioned that the essential oils oregano, cloves and cinnamon have, in some people, suppressed Lyme even more than antibiotics. She said there is no scientific studies out to prove it but she felt it was worth a try, especially since those oils won't cause any harm. We are waiting for the results for the coinfection tests as I failed to include some info which delayed the results. Was so frustrated with myself! 

Joseph has been reacting to Kiana's decline with meltdowns of his own. Sometimes when they are both going off at once I wonder who's circus I stepped into. :) Tristan keeps saying he feels sorry for me (most of their rage is directed towards me) I told him that I don't take it personally as I know they are letting out their pain in the only way they know how. He can't understand how I am not offended by the things they yell at me and I have a hard time explaining why it would hurt if he said the things they say but when they tell me I am a stupid old lady, I just brush it off and wait for the hug I usually get when the storm has passed.

I have learned (or am learning) to embrace the circus and joyfully claim the monkeys!

Tuesday, October 3, 2017

Sibling Relationships - Living With FASD

Like everyone else, people with FASD long to be loved and accepted. Due in part to all the trauma our family has gone through over the years, Joseph and his siblings have a strained relationship. They endured trauma in their bio homes, then secondary trauma in our home due to RAD and FASD. The secondary trauma, cemented their thinking that our home is not safe. Obviously mom and dad were not strong enough to keep them safe because things happened to intensify their fear and pain even while mom and dad were saying, "You are safe now." 

Joseph's actions are similar enough to his brothers' that his siblings are triggered even when he means no harm. Because of his inability to read social cues, Joseph often steps into a situation and causes more chaos. It looks like he is intentionally antagonizing his siblings, when in reality he is just trying to help. Joseph has weak core muscles so he isn't good at playing physical games, while slow processing speed makes him an easy opponent at board games. Play is usually where children build relationships. The above reasons plus Joseph's lack of self control make that nearly impossible.

With all this stacked against him, he has a hard time building positive relationships with his brother and sisters. He wisely thought up of a plan. He would be super helpful, which is a good idea except that FASD once more got the upper hand. For instance, when he wants to open the door for someone, he pushes past them and then proudly holds open the door. That doesn't go over well with temperamental siblings! If I drop something, he will drop his book and come running to pick up the fallen object, tripping over his feet in the process. He tries to quickly clear the table all by himself but drops dishes because he carries too many at one time, despite repeated reminders to carry one plate at a time. Sometimes I feel sorry for him and other times I need to remind myself to be empathetic. If he would do what he is told to do instead of forever rushing in and trying to help, life would be so much easier for everyone. The problem is, how do I explain that to him? He melted down the other day because, "I was just trying to help and now everyone is cross at me!" 

We were at a loss as how to help him until Dean struck on a brilliant idea, "You need to ask before you try to help people." He told Joseph. "Sometimes people don't need help and sometimes when you try to help and the person doesn't want help it just makes them grumpy." 

The flip side is his siblings. In reality they should be the one's who are showing grace. However the whole trauma thing discolors every situation, plus someone with Neuro Lyme isn't exactly prone to graciousness! Sometimes I think perhaps we should begin family therapy to work through some of these issues, but Kiana wouldn't be able to process much, neither would Lia and Tristan isn't at the age where family therapy would appealing. Maybe I am just taking the cowards way out. Have any of you tried it? If so, what did you think? We went for a few sessions around the time Braden left but our hearts were so broken and bruised from the past years that it wasn't very beneficial.

And so, that is the current situation at our house, trying to teach our children how to have good relationships when the odds are stacked against them!

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