Fetal Alcohol Spectrum Disorder 101

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How We Handle Outside Activities- (Part 4)

Posted by fasd101 on August 25, 2013 at 12:40 AM Comments comments (0)

~Continued from part 3~


Does your child act out after being in a crowded place?

Get a large cardboard box.

Photo Credit

A box that a freezer comes in is ideal. Lay it on its side, put in a nice comfy blanket, pillows and a few other things that are calming to your child, like stuffed animals or a doll. Take care not to put very many things in the box and only put things in there that are quiet and non-electronic.

Put the box in an area where he will be the least distracted and tell your child this is his safe place. If he is feeling overstimulated remind him that he can go in there and take a break.

This is a tool to help your child learn to self regulate.  It is NOT for punishment. If you start using it for punishment, then it will no longer be a therapy tool.

If your child is losing control, becoming to loud, starting to have a melt down, help him to his safe place. Remind him that he can come out anytime after he feels better.  The box method has the same effect that the blanket over the head does, but works better. It will block out the visual stimulation along with muffling the sounds and help your child's brain become calm. Let him stay there as long as he wants, he will know when he feels better.


I have a friend who's daughter was having a very difficult time before and after school. She would get ready to go to school, but would whine and fuss and meltdown everyday. The same thing would happen after school. I suggested the box method to her and she tried it. Her daughter took to it right away and virtually solved all those acting out issues before and after school.


If your chid is having self regulating issues and you give this a try I would be very interested to hear your feedback as to whether this worked for them or not.


Time and space for the box and training how to use the space are the cost. Are you willing to pay it?



Does your child seem to be cranky during or after an event?

Sometimes there is nothing that will prevent the child from having a bad day. This is the life we live with our FASDers. But if you plan ahead with lots of “down time” before and after the event, you should see a difference.

Time and having to plan are the costs.

Are you willing to pay it?



Does he/she show any physical symptoms (stomach ache, vomiting, wetting or soiling their pants or bed, etc...) during or after an activity?

Evan & Daniel are my little model's who are not really in pain

Be sure to provide small amounts of food/snacks (low fat & sugar, high protein) for your child and plenty of water. Sometimes when they are overstimulated they don't realize they are hungry or need something to drink. If you try and keep their blood sugars level, it will help lessen behaviors. Remind them to use the toilet. I have a couple of boys who don't understand that the pain in their tummy is because they need to poop. Mix the lack of recognizing those ques along with over-stimulation and you will have a kid who has a toileting accident or is cranky because he is in pain.

Packing small snacks & drinks, checking if he needs to potty are the costs. Are you willing to pay it?



I know for family functions and activities of that nature, it's unlikely that you can stay away from those things until they are older or more able to “deal” with the situation. So here is what we did and do to cope with those events. We had to think about what would cause the most problems for our children.

One key thing we realized was that the length of time at the activity played a huge role. Our children would get exhausted and then start acting out even more.

You have to understand that for us, in our daily life, our brains take care of so many things and we are unaware of most of those things.

For our FASDers, they are overwhelmed by EVERYTHING. They notice aunt Ruth is wearing perfume and aunt Sophie is wearing another kind of smelling perfume, and the different food smells and textures, and the lights are bright, and the house is warm, and Grandma is talking to Aunt Sophie and dad is talking to Uncle Jon and the baby is crying and the TV is on and your child can't remember where the bathroom is, and the toilet is in a different place than the bathroom at home and he is not sitting in the same place at the table next to his brother like he does at home and on and on.

They are trying to keep track of everything at once and they become overwhelmed.

I once heard it put like this. Its like exercising. For us in our daily lives we are taking a leisurely stroll with occasional short sprints. For them, its like they are running a marathon all the time. The only time they get any reprieve from that is when WE help them to have “down time”.

To help our children not to become to exhausted, we started going to outside functions a little late and leaving a little early.  We helped ease our children into these types of activities.

Another way to help your child to cope with this type of activity is to set up a place where your child can go when he/she is feeling overwhelmed. A quiet room that he/she will be safe in and can self regulate. Provide his/her familiar items from his box or backpack. You can even sit with him in the car for a few minutes if there is no other acceptable place. 


An Example would be at family functions. Sometimes, all we needed to do was try and make sure we were the last ones to arrive. That way eveyone had already come in and greetings done, so my children only had to experince that commotion once when we would arrive.

This helped eliminate the "surprise and excitement" of someone else joining the get together which in turn would be overstimulating and then we would cause behaviors.  If I noticed that behaiors are coming, I have the child sit quietly next to me or take him outside or to the restroom, alone, to help him regroup so that we can stay at the gathering a little longer. 


**Remember,**

its OKAY if you arn't willing to pay the price. You know best how your child will handle the activites

and if YOU are willing to pay the price.

I hope these suggestions have been helpful. I would love to hear from you especially if you try any of these techniques and the results.

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How We Handle Outside Activities- (Part 2)

Posted by fasd101 on August 17, 2013 at 12:05 AM Comments comments (0)


When thinking about outside activities


I evaluate the “price” of the activity. That is, how much over stimulation and behaviors is this likely to cause and for how long.

With that information I then decide if I am willing to accept that price. I know from experience what some activities cost. Only once in awhile now, I am surprised with hidden expenses. If I am not willing to pay the price, or paying the price does not work for me right now, then we stick to routine and everyone is happy.


Timothy and Daniel proudly smiling because they

just finished a cooking lesson and now they are getting to eat their creation.

Because I have been doing this for awhile, and I know how my boys are able to process the change in routine, I am generally able to make choices pretty quickly.

I used to have much more anxiety over what was the best choice and how to prevent as much behaviors as possible. I felt guilt and pressure when we weren't as involved in outside activities as other families. I dreaded picnics, pot lucks, family functions, church, sports, or anything for that matter, that took my boys off of their daily routine and out of the home.


But I learned a few things.


For one, I do not have to accept every invitation or sign them up for every activity.

Not my schedule, thankfully

My boys don't need to have several activities a week. Really, they don't even need an activity outside the home even once a week. It's not fun for me to have to deal with the behaviors that to much activity causes AND they don't like feeling so out of control and confused by what is going to happen next.

*Yes, we have seasons where we do something outside the home (other than the grocery store and church) every week, but its planned and only for a short season. That brings me to the second point.



Planning

I know what you are thinking, you can not plan your whole life. Your right! Life happens. So plan what you will do when the unexpected happens and think of things you can do to help your child through it with the least amount of behaviors. I keep a back pack ready for events like this and I have a mental list of items I would throw in it if time allowed. I was thankful for the backpack during some long E.R. Visits.

Items I put in the back pack are breakfast bars, granola bars, or some small low sugar/ high protein snack, juice boxes or water, small toys, blank notebook paper, pens, crayons, activity books, reading books, CD player and stories on CD, small blanket, change of clothes and pull ups (if your child wets or soils himself) and wet wipes.

When you can plan ahead, you are able to think of the activity and how your child might respond.


Does your child get fatigued easily?

I know with my boys, they get tired very easy (Don't think age, think ability and developmental age, because even my teen boys get tired), which causes cranky behaviors in them and me.


So let's say I have signed them up for soccer. On the days they play or practice, I make sure they have gotten plenty of rest the night before. My little boys take a nap the day of the soccer event and my big boys either nap or have quiet time for an hour or two. Quiet time means NO TV or video games. I find it best to listen to a story on the CD or read. No talking, just resting.

The extra time it takes for the quiet time and naps is a cost. Are you willing to pay it?



Take a look at this video of Morgan Fawcett, he has FASD.

He talks about needing down time.

You need Adobe Flash Player to view this content.



continued in Part 3 of "How We Handle Outside Activities".

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How We Handle Outside Activities- (Part 3)

Posted by fasd101 on August 15, 2013 at 12:40 AM Comments comments (0)


~Continued from part 2~


Is he/she going to have toileting issues?

Photo credits


If so, be sure to pack extra clothing just in case. Maybe this is a good time for him/her to wear Disposable Underwear (like pull ups). There is no harm in your child wearing Disposable Underwear (even if he is older) if he needs that extra help. You can get all different sizes (even adult size) from my links. Take extra potty breaks. If he should have an accident, try and stay calm and don't make a big deal of it, just help him clean himself up and then get back to the activity.


I understand how frustrating this can be, but by staying calm and quiet and not talking very much you will be helping your child to regroup and move on from this issue instead of adding more anxiety and the feeling of being out of control.

Watch his behavior, it may be a clue that the activity is to hard for him to handle. If that is the case, and you are able, either leave the activity or take a break from the activity and let your child have some quiet time to regroup.

In a backpack I like to put a few little toys (cars, coloring book or note paper) and a small blanket. It helps to put the blanket over the child's head and let him play with those toys quietly.


The blanket over the head blocks out a lot of sight stimulation and muffles some of the sounds. After about 10-20 minutes he may be ready to get back to the activity. If not, then he may not be able to process the activity at this time. You could to try it again in the future.

Disposable underwear, possibly wetting or soiling his pants and leaving the activity early are costs? Are you willing to pay it?



Is he going to get anxious?

If you are able, show him the place you are taking him. Google Maps is a cool and fun way to see places ahead of time. Talk to him about what you are planning on doing, who is going to be there, what you might eat. If you are able, give him as much information as possible, several days, even weeks ahead. He wont remember, he will ask you again in five minutes and you will have to tell him again,

But that is the cost

of hopefully preparing him/her for a successful outing.


One of my children especially has this issue of perseverating on "stuff" in life.

If he knows we are thinking of going anywhere, he will ask several times when we are going, did I remember we had to go to _____? and a whole host of other questions, reminders and bodily ticks. Sometimes I take the liberty to NOT tell him ahead of time that we are planning on going anywhere AND sometimes I give him fare warning. It depends on where we are going. If it is a familiar place, then those are the times I take the liberty to wait to tell him.

If the questions become overwhelming and he does not seem to be able to control himself, I will put up my hand and tell him to

“stop!” 

Photo credit

"Its okay, I have it under control. You can trust me. I don't want to hear you talk about this anymore."

Of course, I have to do this several times. Thankfully, over time he has learned to have some self control and trust that I am handling things.

I also tell him to “check the calendar” which is another tool we use. Each of my boys have their own calendar (yearly Christmas gift from the Dollar store). They each mark their calendar with things that are going to happen and can mark the days off as they choose. I also have a large calendar that all of them can see with appointments, birthday's, events, etc... like most calendars. I too mark off the days as they pass. This helps give them a more concrete way of seeing the time pass as

events get closer.


Being asked a million times & reminding a million times, calendars, time explaining who what when where and how about the event and planning, are all costs. Are you willing to pay it?

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Comment below, I would love to know what you think. 


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