Fine Motor Skills

I'm not sure what I've shared about Sweet Pea's fine motor goals, but we have been working on a few things at home in addition to writing her name.  Writing her name is actually something that is a few steps ahead of where she is, but that's okay.  One of her IEP annual OT goals is to imitate up to 3 pre-writing strokes (vertical line, horizontal line, approximated single closed circle) and imitate intersecting lines.  She is making good progress towards that goal, but since practically right after we made that goal she stopped doing single closed circles and started doing circle after circle after circle.  Her outside school OT couldn't believe that she started doing that so consistently, but we all knew that we could get her back to single closed circles eventually.  It's still a work in progress, but I find that by using the phrase "start...stop" she does very well almost every time.  The video was supposed to show you the circles she was making, but the crayon color was a very poor choice so unless you REALLY squint and put your nose up to the computer screen...you probably can't see them.

But the video also shows her accomplishing her second IEP OT goal...Using adaptive strategies as needed (including but not limited to: adaptive scissors, varied materials to cut) Sweet Pea will use scissors with her right hand to snip material (paper, play-doh) held in her left with no more than minumal assistance (Sweet Pea does at least 75% of the task) in 4 out of 5 trials as measured by observation/data and staff report.  We purchased the Maped Koopy Spring Scissors, but we don't use the spring anymore.  I think if the scissors were just a little bit smaller she would have an easier time, but she is doing pretty good as is.  I am going to speak with her OT about increasing this goal as I believe that she might have met it.  There could be some piece that I'm missing, but she seems to be meeting the goal if you look at the video below.



This gives you an idea of why we work on some of these skills at home...she really enjoys it!  We don't push.  When she is done we let her be done.  Sometimes we have her finish what she is working on just to teach her to complete tasks, but if her mood isn't open to that we just let her be.  We don't want to risk losing her love of learning!

IEP Part 2

I forgot to mention a few other things in my last post.

First, I don't put a lot of weight on this, but it still makes me very happy and we will just see what comes of it...Sweet Pea did not qualify under Intellectual Disability (ID).  Her cognitive testing scored too high because she has splinter skills.  She can't do all the base level skills, but she can do some that at her age level.  The district was surprised that she didn't qualify under ID and had to research what to put her under because they knew that she still qualified.  After speaking with a few other districts and people they landed on "Medically Established Condition".  It is my understanding that this is an option until age 5 or so and at that time they would have to do the testing all over again to see if she was now ID or if they would have to put her under Speech & Language Disorder.  It was explained that she would still receive all the same services if they put her under S&L Disorder, but that seems a little odd to me, but it could very well be true.  We will cross that bridge when we get there.  It was wonderful to know that at this point she wasn't qualifying under ID and we will see what the future brings.  I personally like this because I think that people will have higher expectations for her without the ID label.  I know that it shouldn't be that way, but...

Second...I created two video slideshows at the very last minute because I hadn't prepared a nice document that went over our goals and aspirations for Sweet Pea so I thought a real brief slideshow would be better than nothing.  Here is the video:


And finally...this is a video slideshow that I created to help lighten the mood if indeed we were going to have to fight for Sweet Pea to get into the afternoon class.  I figured that we would all be tired by the end of the meeting when it was going to come up so this would help break up the monotony of the meeting and hopefully make the team smile...in addition to seeing why she needed to be in the AM class.  Enjoy the video here:


I've picked up the IEP from the district and now I have to read it over with a fine tooth comb to make sure it accurately reflects what we agreed upon yesterday.  Fun times!

First Ever IEP

Sorry that I have been MIA...again!  This time it is because I've been prepping for Sweet Pea's first ever IEP, some family stuff that is taking up a good chunk of time and just loving on these two cuties since Daddy is working a ton of hours.  I'm so exhausted by the end of the day that a blog post just isn't in the cards.

Anyway...the purpose of today's post is to let you all know how it went.  The backstory is that Sweet Pea has received all her services from the Regional Center in our area.  However, that ends on her third birthday.  She will start to receive almost all of her services via our local school district come her third birthday.  We transition from an IFSP with Regional Center to an IPP with Regional Center and an IEP with our school district.  We had 8 different appointments for assessments over the past few weeks in preparation for the IEP meeting today.  Sweet Pea was assessed in PT, OT, Adaptive PE, Speech, Psychology, and Special Ed and a few of those had to meet her two or three times...only one was because Sweet Pea was uncooperative when she had a major ear infection and was not herself at all.  It was interesting to watch the assessments and see how Sweet Pea reacted to each specialist.  I am very happy that Sweet Pea clicked with all but one superbly!  The one that she didn't totally sync with was still good so we will have an amazing team working with Sweet Pea come her birthday.

I asked for the reports last Monday so that I had a week to review them myself and also to go over them with her therapists to ensure that they were in line with what they had seen over the past many months.  I worked with the specialists to make a few tweaks to the reports and goals during the past week so when we walked into the IEP today we weren't going to have to spend hours on that part.  It was wonderful that way because the meeting still took an hour and a half!

Let me back up a minute...in my conversations with the Inclusion Specialist at the district preschool she has been telling me for a couple of months that there wasn't an opening in the morning classes so Sweet Pea would have to attend the 12pm - 3pm class.  Considering she naps from 12-2 every day...that was not an option for us.  I did lots of research to find articles that show that kids with DS have poor sleep quality and quantity.  I needed to be prepared to fight this as an afternoon class was not appropriate for her and she is legally required to receive a Free and Appropriate Public Education (FAPE).  I had a good relationship with the district and I didn't want to start off with a big disagreement and a battle, but I needed to do what was necessary for Sweet Pea.

Back to today...Daddy, Grandma and I attended the meeting and sat around a table with 10 other people...that's right...there were 13 of us in this meeting!  I can see why people are often intimidated!  We were lucky that 2 of the 10 others were people that were currently supporting Sweet Pea via the Early Start program with Regional Center so it was 5 vs 8, but still!  We brought some loaf cake for all to enjoy and we settled in for a long meeting.

Not 10 minutes into the meeting the Inclusion Specialist said, "Before we go any farther, I want to let you know...an opening just came up for the AM class.  She can start on her birthday!"  Grandma and I both had to fight back tears of joy, but our eyes definitely watered up!  I was so fearing the fight that I was sure we were going to have, that this news...at the beginning of the IEP...just made me feel 20 pounds lighter.  She said it wasn't confirmed until this morning and the way they said it almost made it sound like they had to make it happen...but whatever they did...they made it happen!  It makes me feel so good that they listened to our needs and concerns and found a way to make it work.  So many people have to fight with the district for every service and we are so blessed that we didn't have to fight for a thing.  Once that was out of the way the entire flow of the meeting was more relaxed.  We got to meet her new teacher for a few minutes and then we went through all the various goals and services.  Each week she is going to be receiving:

• 5 days of full inclusion preschool for 3 hours a day
• 1 30min session of individual specialized academic instruction in the learning center
• 2 30min sessions of group specialized academic instruction in the general education classroom
• 3 30min sessions of small group speech (one of which will be before preschool starts so she isn't missing as much time from the classroom)
• 1 30min session of individual occupational therapy
• 1 30min session of group occupational therapy
• 2 20min sessions of group adaptive physical education
• 2 30min sessions of individual physical therapy

It's a lot of services and we are a little concerned about how much time she will be missing from her class, but we will see how it goes for this school year and then re-evaluate for the fall if we need to.  The nice thing is that this is now considered her "stay put" so if we run into issues at a later point we have this to fall back on.

Needless to say, Daddy, Grandma and I walked out of there extremely happy that we didn't have to fight on the AM class and that everything else was as simple as it was.  I highly recommend asking for all reports (draft is okay) 5 work days prior to the IEP so that you have time to review them yourself and with your current therapists.  It really made the meeting so much more streamlined and unemotional.  IEPs are based on your child's deficits so that is what the majority of the reports are speaking to.  Having to sit there and listen to an hour of all the things Sweet Pea can't do would have been beyond torturous to me.  With that out of the way we were able to focus on the goals and what we wanted her to achieve in the next 12 months.  That is a very positive task and I really enjoy hearing what is coming for her.

I haven't signed the IEP as I want to have a day or two to review the final IEP.  They were making a few minor changes as we went through the meeting so I'll pick up an updated version of it tomorrow and hopefully have it back to them by Wednesday or Thursday.  Sweet Pea will be starting at the preschool on her birthday so I need to decide what treat she will bring into the classroom to celebrate with all her new classmates.  Sugar will certainly get things off on the right foot with her classmates!  I can't wait for her to start making friends and hopefully having playdates.  We have spent so much time in therapy the past 3 years that we haven't had a whole lot of time available for playdates.  This new configuration will help with that and I really am excited to get started. We have a great team working with her now and it will be very sad to say goodbye to them, but I know we are going into new good hands and I hope that it won't really be goodbye.

Now I'm going to enjoy my glass of wine and celebrate that Sweet Pea is in a great district with an amazing team and we are very lucky indeed.  Cheers!

Tools for the Journey Conference

I would like to thank Club 21 for putting on such a wonderful conference "Behavior and Social Skills for an Inclusive Life"!  The speaker was Rick Clemens who is the Director/Founder of Inclusive Education and Community Partership (IECP).  The main purpose was to train parents and educators on how to not only ensure that our kids are fully included in schools, but how to make that inclusion successful.

There was so much covered, but I will give you just a few key take aways that I learned.  Some are relevant now (IFSP) and some will be relevant when Sweet Pea is in school.

• The more inclusion the better when the child is properly supported and positive.
• Properly supported does not always mean a one-to-one aid as that is actually often not the best path since that can mean the kid is in the back of the room with his aid and not really being included.  The better option would be to have the other students helping when necessary and setting up the environment so that an aid isn't necessary.  This is obviously not always an option and I don't have a clue how to implement it, but it is good to have that as a goal so that we can be thinking about it when the time gets closer.
• Don't speak about the specific disability label (ie Down syndrome), instead speak about needs and challenges.  Some regional centers or schools will say for example, "behavioral services are only for kids with Autism", but if our kids require the services, they should get them too.  There isn't anything in the laws that limit any services only to specific disabilities, they talk about when the services are required for a child.
• After the budget cuts in CA they stopped funding camps and some other services.  That is fine because families without disabilities have to pay for their child to attend camp.  The key is that although the RC doesn't have to pay for the camp any more, they should still be providing the behavioral supports to allow our kids to participate in those activities.
• Always put a behavior goal in your IFSP to help cover you in a variety of situations.  
• Inclusion is not about changing the child completely to fit into the environment, nor about changing the environment completely to fit the child.  Inclusion is where the child and environment fit together naturally (think of a blue circle and a yellow circle and overlap them together and the green area that is created is the match area.  The goal is to have both adapt some to increase the size of the overlap between the two.  Match area must grow over time or something is wrong and not working properly.  When the matched area isn't growing, look at the environment first before trying to modify the child. 
• Planning ahead is imperative as it is easier to learn appropriate behavior initially instead of trying to erase inappropriate behavior.
• Planning ahead involves planning for the adults, child, peer & the environment.
• During the assessment, look at the environment, needs, etc and maybe an aid is needed at certain times, but not 100% of the time.
• Keep in mind what you are trying to accomplish, just being there isn't enough of a goal.  Having fun, academics, etc are ok goals and we just need to know what the goal is before we can modify an environment to help achieve it.
• Priming is preparing a child for a situation or experience.  It can be just talking to them before you go somewhere to let them know what to expect or it can be more elaborate and include showing them pictures from the internet of the museum that you are going to and talking about what is appropriate behavior and inappropriate.  So many situations can be helped by priming the child before hand.
• Try to participate in community programs that others in the child's class are participating in because kids play more together and are better friends when they are in multiple activities together.
• "The mere diagnosis of a disability does not warrant more rigorous expectations of behavior for the child."  This really made sense, but it is sometimes hard for us since we don't necessarily know what is age appropriate behavior.  They recommended looking at an activity and seeing what other kids are doing and then looking at what your child is doing.  Ask other moms of typical kids if their child ever does x.  This doesn't mean that if your child is 5 that it's ok if they are acting like a 2 year old if when another child was 2 they acted that way.  It's at the same approximate age.  A 12 month old would not be expected to be quiet in their babbling in a public place.  That's not a free pass for inappropriate behaviors, but it is something to keep in mind as we run into those issues.
• Goal is to have peers support child because friends teach friends.  Make peers aware of the strengths and weaknesses of child and what support they can give to help.  Be specific with how peers can assist child. Tell teacher that it is ok to discuss child's disability.  You have to waive your confidentiality otherwise teachers can't discuss.  Waive in either a letter or in IEP.
• Ability Awareness: All students have their own strengths and weaknesses.  Teach about strengths and weaknesses of child with disability.  Elicit support and educate the students on how to help the child the best.
• Create environments that facilitate natural social interactions.  If child sits by herself at recess, try to get a social club (drama, etc) created that child and others would want to participate in.  
• Try natural friendships before peer buddy models
• There is less downtime in schools so we need to adapt schedule so child gets the breaks she needs.  Setup smaller sections for child and allow them to have a break between activities instead of moving from one to another.
• If you want to be kept up to date on how your child is doing in their class create a checklist with yes/no and fill in the blank questions.  Keeps it more objective.
• Cole & Meyers did research on inclusive education results: 75% meet goals in inclusive settings vs 50% in special ed classes.
• When learning a new skill mix in a challenging new task with a mastered one.  If addition problems are mastered and subtraction is new, do addition problem, addition problem, addition problem, subtraction problem, addition problem, addition problem, addition problem, subtraction problem.
• If dealing with teasing: 1) Ability awareness 2) elicit support of cooler kids 3) turn to the no tolerance policy

Turns out there were more key points than I thought.  I hope this helps someone else as it was very informative for me.

Thank you Auntie and Cousins for watching Sweet Pea so Mommy and Daddy could attend the conference!