1st Grade IEP!

I'm sincerely blown away that we will have a first grader soon.  Seems like just yesterday we were bringing Ayden home from the hospital!!  We had our annual IEP yesterday, and this kid continues to blow me away.        I won't bore you with the details, but just a few highlights.

1)  Ayden will have increased time in general education (inclusion) next year.  He will essentially have only about one hour per day of 1:1 teacher time in the ASD room.  He will be in normal inclusion for everything his peers do with para support.  His speech and occupational therapy will be 1/2 pull out and 1/2 pull in where the therapists are in the gen ed room with him.  We also found out his teacher for next year.

2)  Ayden will be taking all grade-level assessments with his peers next year with slight modifications as he cannot write or speak.  While this was not written into his IEP for kindergarten, the school decided to do it anyway. We have an understanding with this team that at all possible times we want Ayden to be treated the same as typical peers - so this was one thing they added over the course of the year.

3) I posted on facebook how this was my fourth IEP but the first one I had not stressed or worried about.  I wholeheartedly credit this to his team.  They have been amazing about follow-through, communication, and pushing Ayden all the time.  Each person is invested in him as an individual and not just "one of many" of their students.  I believe our successes we've seen this year are partially due to them, partially to us, partially to Ayden, and partially to the addition of arbaclofen (stx 209) in October.   I can't look at this past year and not give credit to each of those things as they all played an equally important role.  I need to point all that out before I come to my final point...

4)  With all the success and development we've seen this year, plus the addition of normal kindergarten assessments we can truly get a picture of where Ayden is at.  We received the scores for all his assessments at the IEP.  They were...amazing.  In all areas of testing Ayden scored at or above what his typical peers do. Outside the fact he cannot write - Ayden will be entering first grade on par with his peers academically.

What a beautiful highlight to end our year on.

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UNC Infant Study

So, the second part of our trip down south.  You can read about the beginning of our trip in USC Infant Study post.

After we finished in Columbia, we got in the car and headed north.  Our final destination was UNC, but we stopped in Charlotte to visit with some friends of mine. These ladies are part of a small group of women that met when we were all pregnant back in 2006/2007.  I'd never actually met them before, but it was just like catching up with old friends.  It was unfortunate that our little 5 year olds couldn't all be there as well, but so wonderful to finally meet both of them in person.  Even so, I had a wonderful time eating oreos, drinking margarita punch, and just talking. It's hard to think we can't just make plans and go out for a girls night sometime, not just with these two but all the women in our group!  Hopefully when we return next year for Emma's 24th month visit we'll be able to get together again but with the kids.

We left Charlotte and headed into Durham/Chapel Hill before dark on Sunday.  It was neat to be driving into Chapel Hill and start recognizing the area from when we were there in August.  East Lansing has a special place with me and is wonderful to live, but if we ever had to leave this would certainly be a city I wouldn't living in.  The atmosphere and people are much like home and part of why I fell in love with East Lansing --friendly, smiling, overall just happy, and comforting.  Plus the area is beautiful!

We settled into the hotel just fine, and just as in August had amazing service.  Emma didn't want to sleep with any light or noise so I spent the evening in the bathroom on my laptop.  She slept at least, but it wasn't very comfortable!  On Monday morning we headed to our first stop of the day.  I keep in touch with one of the people on the team on Facebook and she was the person doing the evaluations.  It was awesome to see her again!  The evaluations did not go as easily as they did in Columbia.  I think just all the travel was wearing on Emma finally and she was very ready to be done.  We headed out of the evaluations directly to the MRI.  Thankfully she was so sleepy she went right down and slept through most of the MRI. We ended up not finishing completely this time, but they got through enough for the study.

I've posted before about this study, but to read a little more on some of the results they are seeing, you can see the latest news on Delayed Gaze Shifting an Early Marker for Autism.

Our flight wasn't supposed to leave until 5:45pm the next day.  With the help of the group at UNC though we did end up changing to an earlier flight.  I was SO thankful we had too, because a nice storm of ice/snow was getting pretty bad as we came into town - 4 hours earlier than expected.  Our flight from Detroit wouldn't have made it until much after 11pm if we would have stayed with our original flight (which I know because that is where my luggage ended up)  so it definitely worked out.

Also..since I am such a procrastinator, I have the results back from her testing.  The behavioral assessment that was completed at UNC (Mullins) came back with all test scores in the normal range.  Even though her receptive language appears low with a monthly value, it is still in the normal range.

Fine Motor: 15 Months
Gross Motor: 13 Months
Visual Reception: 12 Months
Receptive Language: 11 Months
Expressive Language: 12 Months

The adaptive behavior assessment was done at USC (Vineland) and also came back with all scores in the normal range.  This refers to basically how she meets her daily needs.  Her standard scores were from 100-110 in all areas (communication, daily living, socialization, and motor skills).  "Normal" or "Adequate" score is between 85-115.

Overall, very good results.  She is continuing to develop normally and I continue to question each time she falls a little outside a "normal" developmental milestone.  It's a good combination!

And because I don't have a great picture from our time away...here's a nice video to show Emma's new favorite thing -- animal noises.

If you have an infant or know someone with an infant with a premutation or full mutation of Fragile X OR has an older sibling with Autism, please consider being part of this study.  It's very difficult to find children that young to participate and the amount that is gained for helping others is so vast.  Even if you just want more information, I can put you in contact with the study and/or give you more in-depth at what we did, arrangements etc.  

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We Have a Kindergartner!

I know I've said this before, but I can't say enough times how lucky we are to have the team we do for Ayden. I look at where he was two years ago entering the ECSE program and am just so happy with how far he has come.  It is bittersweet to have attended our final IEP with them today, our transition IEP.  Next year, Ayden will be moving to a different school, different speech therapist, and different teacher. All kinds of changes for him as he enters kindergarten.

While we don't know who his teacher is yet for either the ASD classroom or general education classroom - we are certain it will be a good fit for him.  (We should know within the next few weeks who both teachers are.)  We received most of the services we asked for without any fights and while we did have a little bit of push back on a couple of goals; in the end we did find an acceptable middle ground.  We expect a lot more from Ayden then others do, and that is where the problem occurred.  I'm pretty sure a few of the goals they had he will have reached before the summer is out.  It wasn't bad - we just knew he could do better!

Over all we are very happy with what next year looks like.  We met a good amount of the new team today and there isn't a single person that even at first impression rubs me the wrong way.  I hope it continues in this fashion as we start the school year!  It's going to be a lot for Ayden at first:  all day, new school, and lots of new experiences, but I really believe he'll settle in well.

One thing that we didn't know going in and was discussed at the IEP is our district is doing a pilot program to see if ECSE students would benefit from extended school year and they have asked Ayden to be in it.  The program is going to be setup to run 2.5 hours, 3 days per week for about 4 weeks.  It's essentially going to be very intensive speech and language therapy, all 1-on-1.  It's going to be a phenomenal opportunity for Ayden.  It fit right into our schedule for the summer too.  We are very excited, to say the least.

Over all - a very good meeting.  (I'm really glad it's another year until the next one though!)

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EarlyOn - Take 2!

I couldn't help but have flashbacks back to 2009 as I was waiting for the EarlyOn team to come and do Emmalina's initial EarlyOn evaluation and IFSP.  I tried not to think about it much, but those were some rough times for this mom.  For me, our Fragile X diagnosis came during those initial evaluations - not in the form of a southern blot test performed two years later.  The whole process of acceptance was just out of order for me I guess.  Denial certainly came first, but by the time we had contacted EarlyOn each step in the process just made it more of a reality.  I spent much of the evaluation and early treatment for Ayden grieving and feeling guilty. By the time we actually had the genetic testing done the only thing it did was confirm a diagnosis we were already certain of and give us his count and methylation status.

I guess it's no surprise I was a little anxious this time around.  I already had a diagnosis, I knew how bad these evaluations can feel.  So it was pleasantly surprising to come away feeling like we are in a good position.

Good news is this:  Emma does not qualify for EarlyOn services based on delays.  She is actually at or advanced for every single milestone "tested".  It put my mind at ease quite a bit just to see all those boxes being checked! (some well into the 4 month categories even)

I'd say now for the bad news, but it's not bad...just not good.  Maybe 'other' news is better.  We just have a couple areas to watch.

1)  Emma has high muscle tone in her legs and trunk which can be worked through fairly easily and really is not a cause for concern, at least not yet.

2)  She also has an issue where her knees don't fully unbend.  It's slight, and usually corrects itself according to the PT - just another area to watch as she grows as well as do some exercies to help out.

3)  The last thing is kind of a couple things that are mildly related.  I noticed Emma favoring turning her head to her left side a week or so ago.  When I noticed I started trying to get her to turn to the right, but she really hates it.  Ayden had the same thing, which is probably the only reason I noticed it.  We just encouraged him to use his left side and it was better in a month or so.  She also has a nice flat spot on the back of her head, which could be related to her favoring her left side but is more than likely due to her hating tummy time.  In short, we'll be working on different ways to do tummy time (with the help of the PT) that make her not scream and cry which hopefully will help correct all three of these issues.

Overall, a very promising visit despite the few areas of concern.  We start PT 1-2 times per month beginning next Thursday.

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