Tuesday, June 2, 2009
Time mismanagement
I've debated doing some video blogging, like talking to the camera, because it would be quicker than typing it all out, but I can't get past looking at myself on video. That's a whole different issue. I've debated pulling an all-nighter to get some stuff fleshed out, but I can't imagine missing sleep right now. Again, another issue.
So for now, it will have to wait. I don't want to wait too long, though, because Kinlee's getting older, and I have so much I want to get documented about her birth and first few weeks here, the adjustments and the ponderings. I keep saying I need a blogging/digi-scrap weekend...just me, all alone, no housework allowed, just free-flowing thoughts, my laptop, all 1 million of my pictures from the last 30 months, and time to edit my writing thoroughly. (I'm big into editing.) Don't worry, I'm not holding my breath. I'm not *totally* delusional.
As a reminder to myself....topics I need to hit...
~Kinlee's birth story.
~Why I'm thankful Braska came first.
~Asking for help
~The trouble with helping others
~Current parenting strategies
~Braska updates: feeding, development, personality, IEP prep.
~Kinlee updates: milestone documentation
Those are the ones ok for public consumption...there are many more lately that aren't. Don't know what I'll do with them, but for now, it all waits.
Sunday, May 10, 2009
*REAL* Mother's Day
Now I'm having my bowl of cereal. Braska's watching her Blues Clues (by request...love that), and Kinlee's in the swing. In less than two hours from now, we'll have to manage my shower and dressing for church, Braska's morning feeding, a bath for Braska, dressing both girls for church (I don't put the good stuff on them til right before we go), and packing for a day with the in-laws to celebrate Mother's Day and M's birthday tomorrow.
Baths, blowout diapers, feedings all around, laundry, and changing clothes several times. All in about 90 minutes.
That's what a REAL Mother's Day looks like in our house.
And M is still sound asleep.
Friday, May 8, 2009
Lessons learned: Conference on DS, Behavior Session
Feeding, Speech, and Behavior: Caring for children with Down syndrome from infancy to adolescence.
If I hear of a conference, I'm interested. If it's related to DS, I'm more interested. If it's gonna talk about feeding, speech, AND behavior, I'm there. I love to hear all the new things, tips, what's worked for others, and what the pros say. This particular conference was geared toward therapists and caregivers as well as parents. I like this type of format because the information is a bit more detailed and clinical, not just anecdotal, and I enjoy that alot.
I took alot of notes on the materials and outlines that were handed out, so I want to put together a few posts to document more clearly what was discussed and what I noted about things. It might be a bit choppy and random, but I'll try to be sure it makes some sense. As many of my posts are, this will be mostly for my own purposes but I'm sure there might be a thing or two that could be helpful to others. I'm starting with behavior because it's been a hot topic lately in a few of my circles, and I found it especially interesting.
And for the record, I have implemented a few new things that are working with Braska. She was having more "issues" with my time being occupied by Kinlee than I realized. If you want more details on that, I can address that soon.
____________________________
Understanding and Supporting Behavioral Development in Young Children
Mary Michaeleen Cradock, Ph.D.
- We all want our kids to be happy, develop to their potential, and have meaningful relationships. Behavior is a necessary element of this because it is related to happiness/satisfaction, it's critical in how children are perceived, it can support or interfere with abilities, and it can optimize experience during critical period of brain development.
- Factors that impact the behavior of young children: Age; Health: sleep/fatigue, illness, medications; Temperament (personality); Environment, including parent behavior.
- Most children, regardless of their degree of ability or disability are classified as "flexible/easy," as opposed to "feisty/difficult" or "fearful."
- The lovely stereotype that so many try to debunk whenever possible--all kids with Down syndrome are happy and amiable--is obviously not true for everyone. BUT--even though kids with DS have a range of temperaments just like other kids, it does appear that kids with DS are generally more pleasant, happier, and have a higher compliance at a younger age than kids without DS.
- Discussion/presentation focused largely on the elements of the child's environment, specifically parenting style and response to the child's behavior.
- For kids with DS: Most do NOT have significant problems in emotional, social, behavioral, or occupational realms. Many have healthy social adjustment.
- A small percentage of kids with DS have a type of behavior disorder, like ADHD, oppositional disorder, phobias, or autism.
- Kids with DS tend to have these behavioral characteristics
Increased off-task behavior, avoidance, strong-willed behavior. This is often seen when they are presented with tasks that are above their level. Most often used: avoidance.
Limited persistance. If they are unable to do something the first or second time, they will often give up and be satisfied to do something different instead of the original task. Example: If given several toys to play with and one of them has small switches or knobs that they cannot yet grasp or use, they may be just as pleased to go on to the next toy instead of trying repeatedly over a period of time to conquer the difficult toy.
Limited self-regulation. Delay of gratification or waiting may not be understood. - Avoidance often includes "charming." Though we all like the cute smiles, the sudden cuddles, the waving or blowing kisses, charming can often be used to avoid experiences or lessons that would be helpful and are necessary. Charming allows the child to focus on the social element instead of the problem solving that might be required in the situation. It can cause them to miss a learning opportunity. And it can become a habit. We must teach the appropriateness of actions like this as they grow up so that it does not become a crutch for them that costs them important learning experiences. Example: When a child is working with a therapist who is requiring them to do things that are difficult or uncomfortable, they may (Braska does) begin to smile or attempt to hug or distract with another cute trick like saying silly things, dancing, giggling, etc. The therapy is important and needs to be continued, so the charming must be handled appropriately so that the learning is still primary and the child is not allowed to succeed in changing the direction of the situation.
- It is a myth that children with DS cannot change their behavioral style. Evidence suggests behaviors CAN be changed, and, often, modifying the environment makes a difference.
- Remember that kids with DS are visual learners. Their verbal working memory is less well-developed than typical kids their age. Example: When telling a child to go to their room and get their shoes, they may go to their room, see a book, sit down and read, while completely forgetting that there was a second task in the instruction. This skill takes longer to develop, so expecting one without the skill to do this can cause what is perceived as behavioral issues, but it is simply that the child is not yet able to complete this task in that way. Give one-step instructions, and when transitioning to two-step, go with the child to assist them in remembering at first, so that the distraction is caught at onset instead of after they've been sitting there reading for 10 minutes when you go to find them.
- Social attention is a powerful force. Especially parental attention. Removing it can be a very effective method of discouraging unwanted behavior.
- Inconsistent behavior is expected. Kids with DS tend to show more instances of doing something several times and then not doing the same skill, for no apparent reason. This is why consistency is necessary when teaching a new skill.
- Behavioral challenges interfere with learning new skills, socially isolate the child, may result in self-injury or injury of others, and can cause damage to environment.
- Solving behavioral challenges:
Define current behavior and the desired behavior
Identify the function of the behavior
Analyze environment for contributing factors
Make a plan to address
Test your theory
Modify - Define behavior.
Antecendents: setting, activity, time of day, others present, child's condition--before the behavior. What was going on before the behavior? Be specific.
Behavior: Specifically what is the child doing that is, in this case, unwanted.
Consequences: Actions and others' behavior that follow the behavior. - Most parents or caregivers tend to focus on the B(behavior) and C(consequences) but the biggest difference is made in A(antecedents).
- Scenario: Jacob's doctor visit. Antecedent: Going to the doctor's office. Behavior: Protesting, Kicking, Pulling away. Would run away if not being held. Consequences: Taken out of the office by mom, remained out for 15 minutes til calm. Returned to the office with mom and nurse.
- Name desired behavior: Go to the doctor's office without protest.
- Questions to ask: Is this in the child's skill set? Is additional skill development needed to meet the requirements of the desired behavior?
- It's helpful to think in non-negative terms for desired behavior, eg. "Enter doctor's office calmly and politely", instead of "Don't kick, scream, and protest when going to the doctor." Another example, related to potty training, eg. "Let's keep pants dry today," instead of "Don't wet your pants."
- Identify the function of the behavior. What is the payoff? Possibilities: Gain attention, gain tangible consequences, sensory experience, escape or avoidance, communication, emotional regulation, release tenion, fill a need.
- The most common functions of unwanted behavior in kids with DS: Gain attention, through charming behavior, social gaze, crying, hitting. Escape or avoidance, through tantrums, charm, focus on other activities/distract.
- Function of Jacob's behavior in scenario. Possibilities: Avoid new situation or old traumatic situation, gain attention of nurse/mom.
- Analyze environment for contributing factors. Setting, time of day (very important!), others' behavior/reinforcement. Ask who, when, and where.
- Behaviors are maintained by reinforcement, either positive or negative. Positive reinforcement: Behavior results in the desired activity or item. Negative reinforcement: Behavior results in removal of preferred activitiy or object.
- Consider when the unwanted behavior does NOT occur. What is the setting then? Eg. Braska's behavior of refusal to eat. When does it not occur? Braska eats much better in a restaurant or public setting usually.
- Adjust desired behavior according to information about skill set and when the avoidance does NOT occur. Example: If the desired behavior is that I want Braska to mind when I give her an instruction, it might be too vague at her current level. If she seems to always avoid if I am not right there next to her to enforce the instruction, I might want to scale down the expectation to begin by requiring her to mind if I am sitting next to her (Give me the book.) Then expand as that skill becomes more consistent to where she can mind if I am across the room. (Put your toys in the drawer.)
- Make a plan to address the behavior. Address the antecedents: Modify the environment if it seems to contribute to the unacceptable behavior. Modify the demand by offering choices or offer collaboration/assistance to help them accomplish the task so they are not instantly overwhelmed with the request. Address the consequences: Pay attention to the positive things and remove attention from the negative (when no harm is done). If the desired behavior is to sit calmly in the doctor's office, praise the child for sitting quietly even if it has only been a short while. Praise for calmness can even be given when the child is being held or read to. The key is to associate positive attention to the positive behavior so that the child is not only getting attention, though negative, through unacceptable behavior.
- Extinction burst: Try to extinguish the behavior, they ramp up the defiance, parent escalates the extinction attempt, child ramps up again. Example given: When a person puts money in a soda machine and no soda comes out, they push the button a second and third time, pressing it repeatedly. If no soda comes out, they may bang on the front of the machine. If there is still no soda, they may shake the machine or rock it back and forth. If this does not work, they throw up their hands, yell an expletive, kick a wall, and walk away. Extinction burst. Like a child who almost seems to have to work himself to a frenzy and then they seem to find a release finally and become instantly much calmer. If the soda came out after the shaking of the machine, that would cause that person to go directly to that level each time he wanted a soda. The same is true of a child. If they receive their desired reaction, be it attention, candy, a toy, or an activity, when they scream and writhe on the floor, they will then use that over and over to get what they want. If they are given what they want ONLY when they are exhibiting acceptable behavior, they will learn that is the best option. (Unexpected factors of hunger, fatigue, and outside changes can alter this, of course.)
- To solve behavior challenges, the hypothesis must be tested more than once. If a behavior has been around for months, it will take at least a few weeks of consistency to re-teach the desired behavior. Trying something a couple times and counting it a failure is giving up to soon.
- Never forget to involve all the "key players" in working on new behaviors. Extended family, friends who are around often, daycare providers, teachers, etc. If a behavior is allowed by grandparents it will be almost impossible to avoid at home. Consistency is ultimately important. Again, this seems to be even more important in kids with DS than typical-developing kids.
- Sometimes it is helpful to get input from others who know the child well to determine the antecedents of the unacceptable behavior. They may notice things a parent doesn't. A common pitfall in solving behavioral challenges is setting the bar too high. Make sure the child is able to comply with request. Expecting actions that are out of the child's skill set will only encourage frustration and thereby avoidance.
- Always choose ONE behavior issue to work on at a time. Choose battles carefully and focus attention on one thing instead of solving all the issues at once.
- Parents must make sure to maintain their own health, mental and physical, in order to be able to have the energy, positivity, and stamina to deal with these challenges. Take care of YOU.
- Example given by audience of issues they are dealing with: Child with glasses, removes them immediately when grandma turns attention away from reading or playing to answer a phone or tend to cooking. Suggested actions: Praise the child for keeping the glasses on even for one or two seconds during a quick look-away. Start by turning face away but leaving hand on her shoulder or arm to show attention but not visual. Praise when she leaves them on during that turning away. Build up time turned away, then begin to step away, sometimes for only a second or two, and return to praise her for keeping them on. Return to read or play again before attempting again. Increase slowly of several days or weeks depending on the child's response. If the child removes the glasses, replace them without speech, no lecture, no scolding, just replace them and continue on. This is taking away the "drama" that can often be the desired response. If grandma must step away for a moment, remove the glasses and take them with her (like to check on dinner) and then return to replace the glasses and continue the one-on-one time. This will help remove the possibility for negatve reinforcement and the chance to defy.
- Example of issue given by audience: Running away when outside playing or in parking lot. Suggested actions: Praise child for walking next to parent, even when parent is holding onto child. "I love when you walk next to me. It's very nice to have you hold my hand!" Spend more time praising the child for remaining close in the yard than time spent chasing or yelling at the child as the parent chases the child. If the child runs, when she is caught, do not lecture or scold again, this is once again attention/drama. Remove the child from danger without excessive talking. Practice can be very successful. Take the child to the car or to the store solely to reinforce proper behavior, so that there is not the stress of actually needing to accomplish shopping or being in a hurry to get somewhere.
- Book suggestion: Achieving Best Behavior for Children with Developmental Disabilities by Pamela Lewis.
Session notes on Feeding and Speech to come soon.
Monday, May 4, 2009
To move or not to move
Do I wake them both to attempt to put one or both in bed? Do I just sit here and let them sleep even though Braska is due for a feeding? Braska missed school today due to lots of goo in her head, so she really needs sleep. But she might sleep longer in her bed. And do I want to sit here stuck for the next hour or so?
They are both so cute when they sleep. But dang, they are little heat machines!
Would you get up or stay put?? Go ahead, tell me...I'll be here.
Wednesday, April 22, 2009
Different States Early Intervention
I've talked to a few of you lately about a variety of issues related to EI (AKA, Birth to 3, Babies Can't Wait, First Steps, etc.) and I'm finding that alot of the states are really different in how they handle things. I had no idea that there was such variety in the services and the processes.
So as a point of awareness for those who surf the web for this stuff, and just as a way to share with our fellow parents how things are where we respectively live (Maybe there will be something you didn't know about your own state!), can you take a minute a summarize a few points in a comment here? For the friends out there who have discussed this with me recently, can you still comment here so that we have the best grouping of info? Thanks!!!! If you've done a post on your blog on this, feel free to put the link in a comment too!
1. Some of you have mentioned looking for a preschool for your child who is about to turn 3. How does your city or district or region handle this? Do they assign a school based on your home location or do you have choices? For you that have kids in the 3-6 range, how often do they attend school and how have you felt about it?
We chose to live in the area of our city that we do in order to take part in our current situation. Some districts in our county have their own Early Childhood building that includes the preschoolers transitioning from First Steps. But we chose to be in the district that utilizes a special organization/facility that has 60/40 classes and in-house therapists. The whole place is designed for those with special needs but there are peer models there as well. (That's not the official description, but that's my simple summary.)This is where Braska goes to her pre-preschool currently, and she'll continue at that location, just going more often after she turns 3. We've been very pleased with our therapists from that organization that we've had already through First Steps and Braska really loves going to "school" on Monday mornings. So there's no "choice" for us to make, and I'm curious how that works elsewhere. It seems like several of you bloggers with kiddos this age are looking at preschools, and that's not part of our process, I'd like to know how it works.
2. Does your EI service provide equipment for you? Like walkers, specialized feeding things (Z-vibe, jigglers), or Sure Steps or orthotics? I've heard some even do things like swingsets!
Ours has a system (IL did too) that basically provides what is reasonable and needed when it is written up by the therapist and/or the service coordinator. I don't know the details, but I know it works. We got Braska's Sure Steps through this, and it covered it all. When we were in IL, they offered some of the feeding things, but I was too impatient for the paperwork and waiting for approval, so I just bought what we needed.
3. How does your EI work as far as payment from parents? Is it on a sliding scale based on income? Or is it a free service to everyone regardless of income?
In both MO and IL, it is a sliding scale. In MO, the fees are lower than in IL. I think the highest amount is $100/mo.
4. For those of you with 2-year-olds, have you had opportunities to attend training or information sessions about how to prepare for the transition to an IEP? What are you doing to get ready for this transition?
I've been blessed to know Adrienne, the leader of our local DS group and a friend I knew online before I moved here. I call her the IEP Queen. She is a wealth of information. She's involved with MPACT which gives training sessions for in-depth info on what to expect and how to be the best team member you can be for your child's IEP team. Here's a link to some great resources if you're interested. I'm trying to learn all I can so that I don't just plain accept what's told as fact but can make sure we get what we need and what's best for Braska.
5. And finally, how often do you have therapy and what services does your child get currently?
Braska gets weekly PT, speech is every other week, and OT is every other week and happens while she is at school on Mondays. She also has a nutritionist who visits twice a month and works on feeding and makes sure we're getting her enough food/fluids by mouth or via the G-tube.
Thanks, friends!! I really appreciate your time, and I think it will be very helpful. I am contacted often with some of these questions, so this will be a great resource!
Friday, March 27, 2009
Wonderful welcome home
When we arrived home today, there was a very delightful surprise here to greet us. A sweet bouquet of flowers.
It might look simple to you, but to me it's absolutely perfect. I knew immediately that there was thought behind it, and I'm all about that kind of thing. I called M right away and told him we were home and that I loved the flowers. And he confirmed that I was right in thinking that he'd planned this little bouquet very carefully.
There's the rose for me.
Many of you will know why that tulip is so special. For those that don't, read this. We like Holland, and especially it's beautiful flowers.
Thursday, March 26, 2009
Mommy report: Words, words, and more words
She's come a long way, also, in completing her words clearly. Nose is now nose, not just "no." Sheep has the SH and a clear P on the end. Bottle is plainly two syllables with the appropriate sounds in both. We're to the stage that when she will allow those outside our house to hear her, they can actually understand her. That's pretty fun, I must say.
Her teacher at school has said that she's just talking up a storm at school the last few weeks. She was all shy the first few, so I'm pleased that she's getting comfortable enough to chat with them. Some uses are more inconsistent than others, but all of these on the list have been shown properly more than a few times. Here's what she's got so far... unfortunately, we've not been successful getting much good video yet, as she's not so cooperative at performing, but she uses them as she needs them.
- Cat: Especially when she sees them on TV or a movie. And she yells this one!
- Drum: She requests her water drums when she gets in the bath, and she has an ice cream tub that she uses for a drum as well.
- Bubbles: This has recently been a request from the PT, as Braska found them in her bag and wanted some bubble action. She also identifies them when asked.
- Nose, Ear, Hair: She prefers to identify these on bodies not her own.
- Picture: This is what she calls the camera. She says it when she grabs the camera if it's been left within reach and when she looks up to see it pointed at her.
- Movie: This is said, generally with animation, as soon as she gets in her carseat in my car. There's a DVD screen that she uses on longer trips. She seems to think they are all long enough.
- Bottle: Every time Kinlee gets a bottle (when we're away from home for a feeding), Braska has to get in on the action, come grab the end of the bottle and identify what she has found. She has a tendency to want to take it out of Kinlee's mouth, but we're working on that part. One step at a time!
- Car: One of her puzzles has a car piece, so it gets identified when she plays with it. She will answer, "What is this?" for that piece too. And sometimes when she's looking outside at the front door she'll say car when one goes by. Oh, and of course, when we go to the garage to leave, she lets me know where we're supposed to go.
- Puppy: She doesn't seem to like the word "dog" so it's always "puppy" instead.
- Sweet: This is her word for a hug lately. She'll lean in and cuddle for a second and say "Ohhhhh, sweet." I think we must have said this and not realized it. She also does this to Kinlee in the morning when she comes to say hi.
- Nice: When she pets Kinlee's head, she says, "Niiiiiiice." We have told her repeatedly to "be nice" so I guess that's where she got it.
- Bless you: When someone sneezes, including herself, she greets with this. So funny to hear.
- Wash: This is used whenever she's done with eating, or if I wipe her hands when getting into/out of the shopping cart or something.
- Bouncy: She loves this one, and it's all for Daddy. They have a knee-bouncing good time in the evening, and she hardly lets him sit down after work before she starts insisting, over and over and over... "Bouncy!!!"
- Poop: This one shocked me, but when I get her out of bed in the morning, if she has messed her diaper, *most* of the time she will tell me "Poop." It's not 100%, but it's been pretty consistent.
- Bib, Tray: When it goes on before eating, and when it comes off...she labels them each both times.
- Door: Any door, she goes to it, knocks, and says, "Door."
- TV: This is what she says sometimes when she gets in the car, instead of "movie," and she hands me the remote in the morning after breakfast and says, "TV!" (sometimes TB) as she knows it is time for Sesame Street.
- Makeup: This is what we call her Aquaphor that we use on her face (also arms and legs, but then it's "lotion" which, I know...it's confusing). Anytime she sees the container come out, she yells "makeup!" and occasionally it sounds like "nakeup" for some reason.
- Bath: If we forget to close the bathroom door, she stands at the side of the tub, knocks on it, and says, "Bath" over and over until someone removes her or complies with her request.
- Diaper: Everytime we change her, we ask, and she answers. And if she gets into the diaper bag and empties it, she labels each one as well.
- Brush: A comb or brush gets called a brush. And she will take it and attempt to comb/brush whatever hair is near. She usually tries to do her own RIGHT after I've done pigtails or something nice and neat.
- Shoes/socks: These are favorites of hers. She taps on them and labels them as we put them on her or if they are left on the floor. And if we put them both in front of her and ask her to give us one or the other, she will get it right. I love that!
- Hat: This one almost always is both a sign and spoken at the same time. And it usually comes up when Daddy shows up with one on.
- Pat pat: This one is for Kinlee. She will lay her hand on K's belly and then lift just her fingers and pat, telling us what she's doing. I think it's quite interesting that she doesn't lift her whole hand.
- Glasses: She occasionally will just touch her glasses and label them. Or when she's around Grandma or others with glasses, she'll label them and grab, but she's better about not taking them off of the person. She also says "glasses on" when we put hers on in the morning.
- Mommy: She has taken to patting me on the arm and saying it, just the last few days. She doesn't use it to request my presence yet, like from her crib or anything.
A few other fun things that we do every day are her ABCs, when I say each and she repeats them all. She's now able to give the following letter on about 6 of them. We also work on numbers 1-10 (10 is her fave), and she will do 2 and 3 when given 1 to start with. And she now has a few animals that she knows sounds for: Cow, Sheep, Cat, Bear, and Horse. She can say the word and then answer, "What's a ____ say?" with the right sound. Bear is our favorite, because she says "raaooor" with a very bored and un-scary tone....a very mild bear, for sure.
We are very pleased that she's doing so well. As most of you know, every kid is different, including kids with DS. Every kids has strengths and areas that they struggle with more. Braska's strength is her speech/communication, whereas gross motor (walking, standing) is her area of great struggle. No matter how that changes or evolves, we'll still celebrate all the accomplishments and continue to work on areas that need more help.
I hope to have video to share of some of this soon!