Spring Fun

 

OK, this is really just an excuse to post a photo of my children!

We went to Hidden Lake Gardens on Sunday, which is a nature conservatory type place a little less than an hour away.  Its so pretty and peaceful.  The kids had a great time just enjoying the scenery, checking out the walking paths, climbing on trees and rocks, and rolling down huge hills.

I love to get away like that.  A tropical vacation is not in my near future, so to go and just be away from everything was a nice break.

But if anyone were to *WANTS* to take me on a cruise or to the Caribbean, let me know : P

 

 

Grade 5 IEP (sample goals)

<<< OK, there will be multiple posts on the Grade 5 IEP, otherwise it will be so long, nobody would ever finish. >>>

 

I know I linked to the IEP Goals and Objectives Bank, and I used to have goals like that for Maddie, but anymore we write our goals very differently.  This post is limited to math and language arts goals.  She does have music therapy goals and speech goals that I will post later.

She is full time in the general education classroom, so our starting point is that she will do the grade level curriculum.  We address her “functional use” of some academic skills in her IEP, because this is a way to track progress and this is the information that drives how we are modifying/adapting/accommodating her schoolwork.  I do not want any goals at this time that cannot be addressed via general education curriculum and classwork.

Sample IEP goals:

Examples of her math goals and how they have progressed:

• Maddie will be able to count out a specified number of items out of a larger set of up to ten ( 05/06 )
• Maddie will be able to locate numerals on a number line up to ten. ( 05/06 )
• Given a choice of 3 numbers in various formats, Maddie will be able to identify the numbers zero through ten. ( 06/07 )
• Maddie will be able to add and subtract numbers up to five. ( 06/07 )
• Maddie will develop addition skills with sums in the single digits. ( 07/08 )
• Maddie will develop subtraction skills with single digit numbers. ( 07/08 )  

Examples of her English/ Language Arts goals and their progression

• When given a choice of three letters, Maddie will correctly identify 15 different letters. ( 05/06 )
• Maddie will be able to select the corresponding letter when given the associated sound for 5 different letters. ( 05/06 )
• Maddie will be able to match 5 words to pictures. ( 05/06 )
• Given a choice of three words, Maddie will correctly identify the ten sight words in level 14 of her  Edmark Reading program. ( 06/07 )
• Maddie will choose from a field of 3-6 words or symbols to sequence and/or complete ideas. ( 06/07 )
• Maddie will sign the 10 sight words in level 14 of her reading program. ( 06/07 )
• Given a choice of 3 words, Maddie will correctly identify 20 sight words in planned reading program. ( 07/08 )
• Maddie will choose from a field of 3-6 words or symbols to sequence and/or complete ideas. ( 07/08 )
• Maddie will identify picture symbols that represent verbs, prepositions, adverbs, and pronouns from the Dolch pre-primer list. ( 07/08 )

So what does this look like?  Remember, our goals drive how Maddie’s classwork is accommodated (when need be).  Looking at math, Given a choice of 3 numbers in various formats, Maddie will be able to identify the numbers zero through ten. (06/07) this meant that when the class was doing a math worksheet, she would answer by circling/ pointing to the right choice from 3 options listed, or choosing the right stamp out of 3 offered, etc.  She is not leaving the classroom to work on this, the goal steers how she participates in the general education assignment. 

Let’s look at Maddie will be able to match 5 words to pictures. (05/06) this is how Maddie does her spelling list assignment.  There is a list of the words and the symbols are separate, its her job to match them to each other.  And Maddie will identify picture symbols that represent verbs, prepositions, adverbs, and pronouns from the Dolch pre-primer list. (07/0 , we chose this one because we realized Maddie knew all nouns and verbs, but not pronouns or adjectives (which are more abstract concepts too).   With  Maddie will choose from a field of 3-6 words or symbols to sequence and/or complete ideas. (06/07), Maddie answers assignments by choosing from a field the correct symbol to paste onto her sheet.

Some people break down the Grade Level Content Expectations (GLCE’s, pronounced glicks - like clicks) and write an IEP goal for each of the topics.  I think that amount of information, for us, is unwieldy.  Its too just much.  If we were in a different position, I could see us doing this, but I trust Maddie’s team knows how and what to adapt/ modify.  If its something that is expected to be mastered by the rest of the class, that is the expectation for her as well.  So if its the norm, it does not need an IEP goal. IMO!

 

Grade 5 IEP (my input)

<<< OK, there will be multiple posts on the Grade 5 IEP, otherwise it will be so long, nobody would ever finish. >>>

Follow this link to read my “parent input” for the IEP.  I always use this same format, with some pictures and our “dream statement” (aka mission statement) for Maddie. 

Parent Input & Concerns (2008)

 

 

Put In My Place

I took the kids to a High School Musical party at our local library tonight.  Our community theater group is putting on a HSM performance in a couple weeks, and they’re visting local venues and events, practicing a couple songs and promoting the upcoming shows. 

At one point, the large group was divided up and went with different cast members to learn one of the cheers.  I stayed with Maddie and helped her try the moves.  When the group came back together, the librarian mentioned that she would be  taping the event to put up on the library’s youtube site (OK- who even knew our library had youtube???). 

But no way was I going to be the on a youtube video doing a High School Musical cheer!  I asked a friend’s daughter who is part of the cast to go up and help Maddie.  Her reply was priceless…

“No, she doesn’t need anyone.  Why don’t you just let her go up there and have fun and do what she wants?”

She totally put me in my place.  And she was totally correct!   

Grade 5 IEP (staff)

 

<<< OK, there will be multiple posts on the Grade 5 IEP, otherwise it will be so long, nobody would ever finish. >>>

It went well!  We were finished in four hours.  That’s pretty much unheard of for me. 

The main thing I took away from Maddie’s meeting was how important people are.  We  did a MAPS session, part of which includes listing what Maddie needs to have a successful year.   I suggested “a caring teacher, who sees her possibility, who believes in her”.  That sparked a bit of a discussion about how important having the right staff is, how the current teacher and the receiving teacher really treat their classrooms like a family, the way having a child with a disability changes the dynamics of the classroom, the benefits to other students. 

This may be wrong, but I LOVE it when the current year teacher cries.  It shows that they’ve made this personal connection with Maddie and see the value in her is, that they care about her. 

During the IEP, we had a discussion about testing, and I was surprised to find out that the tests Maddie had been taking in class were not modified at (ie the content was the same) but the format was accommodated (ie looks different).  I was disappointed in myself because I thought these A’s and B’s she was bringing home were for adapted work, not the real fourth grade curriculum.   I should have been a lot prouder of her!

At the end of the IEP, I like to say “something” to the team members.  

“Because I live a lot of the time in the world of Angelman Syndrome, and spend a lot of time talking with other parents about Angelman Syndrome, I don’t think the team really gets how amazing Maddie really is.  The things she is doing, like reading and learning about types of rocks and fractions, its pretty much unheard of.  And I don’t think she is doing this because she is particularly lucky or high functioning or because I am just all that amazing of a parent, but because she has people who believe in her, who give her the opportunity to learn, who have high expectations for her.  I appreciate everyone’s efforts with Maddie this year.  Thank you.”

 

IEP May 1, 2008

Today is Maddie’s IEP.  It never gets “easy”, but I feel pretty comfortable with how I anticipate the meeting will go.  I know at what points I will tear up and what point I will have to be fighting mad.

Just yesterday, a mom said this to me:

I guess I have looked at an IEP as something done “to” or “for” me.

That speaks volumes about how parents aren’t treated as active participants, as equal partners in the process.

Keep your fingers crossed for me today!  I’ll update tomorrow and post the Parent Input I’m providing.

To be wanted!

What is it like to be wanted?  Isn’t that something that we all crave?  Wow, I’ve never really had this experience with Maddie before. 

In general, this time of year really sucks for me.  We have Maddie’s annual IEP and MAPS meeting.  Its a really long day, a lot of prep work, a lot of anxiety and stress, and I know I’ll be guaranteed to break down and cry at least twice during the meeting.

Part of preparing for the meeting is to find out who the next year’s teacher choices are, get input from other staff people, students who have had these teachers before, parents who have had kids in these classrooms before, and especially the parents who opted to move their child to a different hallway to avoid having a certain teacher.  Meeting the teachers is like asking someone out for that first date.

I’ve known them from the hallway, I’m at school a lot and with the other kids with me, I don’t exactly blend in.  And I think they all know that Maddie is in their hallway, and somebody will have to take her for the next year.

I have had some really bad experiences with meeting potential teachers.  It doesn’t matter if they are purposefully being derogatory in hopes that will avoid the fate of being chosen for Maddie’s teacher, or whether they are just ignorant and unknowingly make hurtful comments, its torture to hear someone rejecting your child, all the while having to still sit their smiling and nodding.   “Right.”  “Oh that’s interesting.”  “I see your point.”

Somehow, I don’t think grabbing the teacher by the shoulders and shaking her while screaming in her face “She is a CHILD damnit a CHILD!  She is perfect!  I wouldn’t let you have the honor of being her teacher”, somehow I don’t think that would go over very well.

Because it is Monday, and Maddie’s IEP meeting is this Thursday, I thought “gee I should figure out what teacher I expect to be there, and she might like to know that she has this meeting coming up too!”

I was able to have an unscheduled hour long meeting this morning with one of the teachers.  It could not have gone a bit better.  OK, maybe one or two comments could have been more PC, but relative to some of the others, if this had been a first date I think I might have proposed afterwards! 

This teacher totally gets it.  She was not hung up at all on where Maddie is “academically”.  She only cared a little bit about the Angelman Syndrome aspect.  The best part?  She talked about what a gift it would be to the rest of her students to have Maddie as their classmate.  The sense of community and how it changes the entire social structure and atmosphere to have a student with a disability included. 

She relayed a story about helping a student keep his support services when moving up to middle school, and was very clear she would be happy to step up and help Maddie if it ever was needed.  Maddie is not even her student yet.  Wow, I was just blown away. 

Its been interesting, that for the past 3 years, each teacher has had a personal experience with a close female family member being disabled.  I sometimes find out when I meet with the teacher during the school year or when we have an IEP meeting for the next year, and the teacher admits why her connection to Maddie is so personal.  Our potential grade 5 teacher told me immediately.  It wasn’t something she was ashamed of or that she was uncomfortable with.  She was proud of it.   

To have to make due with “tolerance” and hoping for eventual “acceptance” of your child (and by proxy yourself) … to be given this warm and honest welcome, its truly a gift.  Thank you Mrs. R!  Thank you.   

Cute photo!

Over Easter break, the kids and I went to Lake Erie Metropark’s Marshands Museum and Nature Center.  I took this photo of all my babies reading.

 

Are they all reading these nature and travel magazines that were at the park?  Obviously no! 

I strongly discourage the phrase “he/she can’t” in our household.  Andrew is at the age where he likes to say this a lot, as in ”Maddie can’t read”  or “JJ can’t ride a bike”.  No, she doesn’t ‘read’ per se, but don’t you dare say she isn’t a reader.  She’s a work in progress (my goodness, aren’t we all ??? )  No, Jason doesn’t ’ride’ a bike, but should I yank him off of it or should I allow him to sit on the seat and teeter a bit because he enjoys it? 

It reminded me of a saying that I like to use, and a few other moms (shout out to the Angelman Syndrome listserv!) have said they liked it, so what the hay, I’ll post it here.  Whether its because a child is young or just not yet able or maybe will never be able, I like to say

“as best you can”

to encourage each child at their own level.  “As best you can” is close to the “just right” concept they are using in school.  Everyone knows what a genuine effort on their part looks like, what actually doing what you know you are capable of is, and what pushing yourself just a little beyond “safe” feels like.

I ask that of them, and I try to ask that of myself.  I’m not supermom, and I shouldn’t aspire to be.  “As best you can” is the most anyone should try for. 

: )

Angelman Syndrome and Toliet Training

 

We started potty training my daughter right before she turned two (before we knew there was something actually amiss with her).  She did not walk or talk at the time. 

She was in cloth diapers (sensitive skin), and she knew when she wet it was NOT a comfortable thing.  It was pretty obvious she would pee at certain times of day.  We started to put her on the little potty, figuring any pee in the potty was one less diaper to wash.  We did all of the old tricks (hand in warm water, running water in the sink, squirting water in that area) to help it along.  She already knew that peeing in her diaper got cold and clammy quickly and she did not like it.  Six months or so later, we were told she was disabled, might have AS and would never be potty trained.
 
We continued with what we were doing and moved her up to the small insert seat that goes on the regular toliet, and when she started preschool she was put into pullups (they don’t do cloth diapers at school!).  The pullups only gave her a rash if she wet in them, so she was fine in this type of disposable because she just didn’t go at school. 

When she was almost 5 and starting her 2nd year of preschool, her teacher said that since she had not had an accident in the past school year, perhaps it was time to move her into underpants.  It was a bit of a shock, because I had held onto that thought “She will never be potty trained” and I couldn’t even see that she was, in fact, potty trained.  I’m ashamed that I let my perception be so driven by what a professional said.

When I switched Maddie over to underwear, I just brought wipes and extra clothes in the car.  She did not like the hassle of being cleaned up after an accident, so if anything having a few accidents helped her become fully potty trained.  We would limit our outings (like if she was over-due for a BM), but these are the same steps I’ve taken when doing the “typical” potty training with my other kids. 

I did resign to throwing away poopy clothes instead of cleaning them because I found that part, the second cleanup done at home, kind of depressing.  Not disgusting, but depressing that I was scraping poo yet again.   Years of poop can wear a person down!  And the poop of a five year old is regular people poop, not the cute baby stuff.  My kids aren’t in designer duds, so no big loss for the little bit of mental comfort. 
When my kids were down to one accident a day, they moved from training underpants (the super thick underwear, some of them have a thin plastic cover that doesn’t really do any good… none of my kids could stand the plastic pants because they made them sweaty and itchy) to regular underpants. 

Maddie has been completely potty trained since age 6, although she needs help to undress, wipe and redress.  But she does not have accidents (with the exception of being sick perhaps or someone not paying attention to her signing that she needs to go or not paying attention to her going into the bathroom.)
 
From ages 2-5, I don’t think Maddie was “prepared” to be potty trained like my other children were “prepared/ ready/ at the right age” when I started with her.  She understand “being in a wet cloth diaper is uncomfortable” but I don’t think she thought “I feel like I have to pee now” like my other children did. 
 
I think those 3 years or so was all in the timing, only putting her on the potty when I knew she would most likely be successful.  Those 3 years was more assimilating her to “this is what you do’.  She did not inititate “I have to go” until she was about 5-6, after “practicing” it for three years.  And now its still mostly timing.  She goes when she gets up, after lunch, when she gets home, and before bed.  The difference between now and a few years ago is she will let me know she has to pee an additional time (I think because she doesn’t want to be fussed with and have her wet clothes changed) and when she has to poop (in the past it was all my watching and smelling for when she was about to go…she hates to be wiped, so I think that is why she poops in the potty rather than having to endure having her butt scraped off).

I was so overjoyed that she was actually toliet trained and out of diapers. . .  I burned that damned diaper bag (like literally burned,  in a fire).  That was cathartic!  Then, ta da!  I find out I’m pregnant and the best diaper bag in the whole world was gone! 
 

 

Destiny

“We must be willing to let go of the life we have planned so as to have the life that is waiting for us.”

E. M. Forster

 

This quote is up on Emma and Teresa’s blog.  I love reading it each time I go to their site.

http://emmasjoyfuljourney.blogspot.com/

 

To me, it says: Let go of what you think its supposed to be like, let go of your preconceived notions and quit fighting what is meant to be. 

I believe in destiny.  I believe everything happens for a reason.  I couldn’t change one thing in my life, none of the good/bad/ugly things, because it would change where I am right now/ who I am right now.

Obviously, Angelman Syndrome has changed my life.  It’s really changed my perspective and given me a purpose.

But so many things have changed my life.  (my parents’ divorce, school, friends, marriage, work)  I don’t claim to understand them all, but at some point I think it becomes clear why things have happened in the past, to prepare me for future trauma by giving me a reference point of being a survivor, to give me the knowledge/ experience to make a certain choice in the future, to be a better person. 

I make no claims of knowing at all, but at some point you have to live in the moment and let it be what it will be. 

Much love to everyone.

 <3