IEP

Those three letters carry so many feelings with them, and they are all over the map: dread, anxiety, hope, fear, defensiveness, (over)protection, anxiety, pride...did I mention anxiety? The lead-up for them has been so anxiety-inducing for me that I actually had an 'episode' during one a few years ago. It was an IEP (Individualized Education Plan/Program) called by us after Ruby was (wrongfully, IMO) denied qualification for the Special Needs Pre-K. We worked for six months to prove that she needed to be in there, so that meeting was one I was especially nervous about, as I thought we might have to continue the fight. We didn't - Ruby was given correct placement, but not before I felt like I was about to pass out and had to excuse myself from the meeting for 10 minutes to get fresh air slumped against the building outside of the school.

I know...sooo professional!

Today's IEP was scary for me because it was the first one since she entered the elementary school. With real report cards and typical classrooms and all kinds of areas where Ruby needs help. The year has not been going perfectly, and that definitely caused me some anxiety when it comes to what her team might suggest for placement going forward. She started the year in the inclusion class (typical kids, about 4 of them have IEPs), with only one segment of pull-out services (this is considered a big win for a child with Down syndrome in our county). One of my many fears was that they would suggest that she be pulled out more often, or (even scarier for me at this time), that she be in a different classroom altogether. For the last month I have been meeting with friends who have gone before me, acquaintances online who are in the know, peers who have insight, therapists who know Ruby - all in preparation for this meeting. I've been over and through everything from what we think her placement should be for her to be successful, to what is legally required, to what is actually realistic, and everything in between. I've said it before: it feels like I'm cramming for a semester exam, but I'm not sure of the specific class I'll be tested on. When I went into this meeting today, I wasn't sure what they planned to recommend for Ruby, which means I didn't know what kind of defense, or offense, I needed to pull out.

The good GREAT news is, it went well. Very well. There were three extra attendees in the meeting, all either county level or school administrators, and those three brought a lot to the table. So much so, in fact, that I had a looong list of things I wanted to discuss and point out, and one by one, members of the team (many times two of the three) brought them up before I had a chance, and presented them in our favor. It was as if they were my advocates and had already seen my notes.

So, the battle is not over. There is much hard work still ahead, for Ruby, for the team and teachers, and for us, but there will be some new supports in place that should help her achieve more success. But more importantly - no, MOST importantly - today gave us a glimpse of at least two 'new' people that see Ruby. Truly see her, and are in her corner. That is what I want. That is what we have with some of our therapists, that is what we had with her Pre-K teacher(s), that is what makes all of the difference, in my opinion. People in her corner give us hope. People in her corner see her potential and work harder to help her achieve it. People in her corner are God's way of giving me renewed strength in my advocacy for Ruby. So as far as I'm concerned, today was a rainbow!

A 1st On The 1st

We are swimming in the eve of the first day of school (on the first day of the month). Any parent with a student, especially a Kindergartner, especially one with an IEP, feels the anticipation on this day.

And all of the emotions.

Hope. Fear. Pride. Anxiety. Joy. Dread. They are all present.

Hope for a year that allows success and thriving.

Fear that someone on their child's team or in their child's class won't see what you know.

Pride that their child is a year older and has a more diverse skill set.

Anxiety over wondering if that skill set will be enough.

Joy in the first day preparation routines.

Dread for the moment(s) when they will be smacked in the face by the reminder of their child's delays in the daily scope of a classroom setting.

You can fill in the blanks for these emotions with a variety of scenarios: behavior notes sent home, kids being unkind, bathroom or eating accidents, inability to meet IEP goals...the list is infinite.

But today, and this last week, I am honestly choosing Hope and Joy.

On this day last year, Ruby started in a classroom that allowed her to go to amazing places, academically, socially, verbally... The team and experience combined with our efforts at home and in therapy prepared Ruby for this big year of starting Kindergarten. In that, I have so much Joy.

In the last week I've met Ruby's new teacher, seen her classroom, reviewed with Ruby some of the many school 'skills' we've worked on all summer, and prayed like there is no tomorrow. And all of that has given me Hope. Hope for a year as successful as last. Hope for classmates that see the value of Ruby. Hope for my agenda and Ruby's team agenda to mix and mingle and move in the same direction. Hope for my girl to soar.

In preparation for this day, I wrote her head teacher a letter. Actually I wrote her two letters, each with several drafts, because that's who I am. (I can get lost in the trees of such a task very easily, especially when I view the stakes to be so high.) I wanted to give her a brief, but helpful first glimpse into who Ruby is. And who her support at home is. The letter was well-received, so I'm counting that as a step in the right direction. As I was writing, I definitely googled around to see if I could find an example to work from. That proved to be a struggle, so I'm posting my letter here in case it helps anyone else tackling the same task.

Hello!

It's the beginning of the school year, and we are so excited that you are a part of our daughter's team. Ruby is a very enthusiastic learner who loves to come to school. She attended (this school) for preschool last year, and she has worked with (Speech Therapist) and (Occupational Therapist), so she is very familiar with the school. Navigating preschool was a road of trial and error, and I expect it to be similar as she moves through kindergarten.

We don’t expect everything to go perfectly right from the start, and we know we will all learn together. I hope this letter will help start the ongoing conversation of how best to help Ruby and help her teachers, and I want you to know that we are always willing to communicate and listen.

 

I’m sure I am giving you information you already know about Down syndrome (T21), but in an attempt to let you know what it means for Ruby, I’ll share some general information. Ruby is more like her typical peers than different, with her own strengths and challenges. Just like every other child, it will take a little time for you to get to know Ruby, and it will take us a bit of time to learn how things work in elementary school.

 

All students have unique needs and learning styles, and Ruby is no different. However there are some common learning characteristics of students with Down syndrome that I wanted to share with you. 

1.     Students with Down syndrome tend to be visual learners. Ruby learns best by modeling those around her. Visual memory is often a strength; pairing pictures with new concepts will help her to remember.

2.     Students with T21 often have struggles with working and verbal memory. Ruby will likely need more practice with remembering/recalling multi-step directions, especially when they are given orally.

3.     Students with Down syndrome are often very social. Ruby is eager to interact with and help her peers. (She has done well in the past with learning their boundaries to her greetings/affection.) However, Ruby often lacks the same verbal skills her peers possess. She is very capable of forming meaningful friendships and relationships with peer and adults, but in the beginning, other students may need help understanding her spoken words.

Ruby’s greatest areas of strength are:

·      Memorizing short chunks of information (3-5 items on a grocery list, answers to basic questions about herself, sight words).

·      Social interactions. Ruby makes friends very fast and will run to comfort a friend who is sad or aid one needing help.

·      Willingness to learn. I cannot emphasize this enough; Ruby REALLY wants to learn and loves to work. When given enough support, she will rise to whatever level you expect of her. She does very well with routines and expectations.

Ruby may need extra help with:

·      Fine motor skills. Her handwriting is currently a big weakness, so modifications in the way of letter magnets or picture identifiers may help her stay engaged in lengthier writing exercises.

·      Impulse control on helping others, asking before sharing supplies, and appropriate sitting (i.e. in a chair, not on the floor, etc.)

·      Focus during counting. Ruby can count to 20, but the higher teens often stumble her. When she slows down and points to each object as she counts, she has success.

Please let me know how I can support you while Ruby is in your classroom. If you have questions, please know it’s always okay to ask; my contact information is listed below. I look forward to working with you this year, and know that together we can help Ruby have a great year!

IEP Time

While it's not an 'official' IEP, because those take place in the fall for Ruby, an end-of-year IEP amendment is a big deal for us because they shape the start of the next school year. And this year is a biggie, as Ruby will be transitioning into Kindergarten in the fall.

We waivered initially on that big step, but listened as Ruby's teachers reminded us of her comprehension of all preschool concepts. That, and we prayed, and researched, and talked with other parents (hello, T21 Tribe!) who have gone before us, both pushing ahead and holding back. In the end we agreed with her team that moving ahead would be the best for Ruby at this time, as it would allow a higher ceiling of academic content for her (even if she ends up repeating Kindergarten). And we know that it's not realistic to expect her to catch up to her peers in the areas she has weakness in (fine motor skills, speech) before moving ahead.

Our experience with Ruby's school (her zoned elementary school) and her team has been encouraging in the past year and a half. While we know that Ruby's educational road may have some bumps and roadblocks along the way, so far this school has given us a lot of green lights. The IEP meeting reflected that as we discussed the assessment of Ruby's performance in this last year. Here are just some of the great things that her team documented on her progress report:

• Ruby does a great job counting 1-10 without help.
• Ruby is independent in the bathroom (with an adult checking on her) and verbally communicates her needs to use the bathroom throughout the day.
• Ruby counts the correct number of objects from 1-6 consistently.
• Ruby is independent in the lunchroom, unpacks lunch and feeds self.
• Ruby has really caught on to the concept of making patterns. She has done an amazing job of completing simple color patterns. 
• Ruby is able to trace her first name with accuracy. Goal mastered!
• Ruby is able to cut large shapes from construction paper with some assistance to turn at the corners.
• Ruby is very social in the classroom and loves to be part of all activities.
• Ruby has grown tremendously in her ability to participate in her SNP classroom this year.

This is a big deal to me because these are things that are typed into the system, in Ruby's team's own words. They are not passing comments made on a note home to make me feel good about her day. And her teacher and OT provided several samples of work that I had not seen yet, all giving great color to her fine motor growth: shapes drawn totally on her own and letters written without being traced. We work on those things at home, but I'd never seen her perform as well as the samples they pulled out. (Yay!)

We discussed placement for Ruby's Kindergarten year and agreed on the inclusion classroom (a typical classroom that includes a few kids that will need some extra support INSIDE of the classroom). She will be pulled out for speech and OT a few times during the week, and she will get pulled out for one Language Arts (ELA) segment each day. They initially wanted to pull her out for two ELA and one math segment, but I asked if we could try the first quarter without any pullouts (to allow her to show us what she could do). Due to the ramped up fine motor requirements during the ELA segments, they worried Ruby would become frustrated quickly, so we compromised.

All in all, it was a great meeting; we are happy with the outcome, and we know Ruby is going to rock it!

Seesaw

Joshua 1:9 Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

I asked to observe Ruby's class this week, in preparation for her upcoming IEP meeting to determine our plans for next year. Can I just say that I love the class she is in. I love her teachers. I love her therapists. I love her peers. I love that Ruby loves school. I love that she knows what to do, where to go, and what is expected. I love the independence they have helped her develop. I love that she is in a place that includes and invites her, a safe place where she can be who she is. Everything about that class makes me so so happy, every day. (Even when she doesn't have a great day.)

But it is a bubble. A very awesome but modified and carefully thought out and aided bubble. And I choose to not dwell on that part most days, but in light of decisions that have to be made for next year, I do need to intentionally remember that reality.

So I am currently on a seesaw, alternating between being amazed by and thrilled with the significant progress she's made in areas of independence and speech and fine motor skills, and also painfully aware that it's still not 'enough' to put her on a level playing field with her typical peers. (Peers that would make up the vast majority, if not the entirety, of her Kindergarten class next year.)

Do we send Ruby to Kindergarten next year? She has come so far in less than a year of Special Needs Pre-K, and she still has 3/4 of a year left. She knows her school and is able to walk the halls and play on the playground. She loves the routines that are typical for a classroom: put away your lunch, hang your backpack, pick a classroom job, go to your seat and start working.

Or do we hold her back? She is on the younger end of things. She does struggle with impulse control. While she loves school, she does sometimes have a day where 'no' is the answer of choice. She does struggle to wait her turn in group settings.

If we hold her back and she stays in her class, she will not be exposed to any new material. And while her speech and writing cannot demonstrate her comprehension, her receptive understanding of all things necessary (numbers, colors, words, objects, family members, calendars, etc.) is up to speed. So will she be bored (re: have behavioral issues) if we hold her back? Or do we roll the dice and try a typical Preschool class instead, to give slightly different content? That's a scary one for me right now, because of how much I've seen her thrive in SNPK over her typical experience.

Up and down. Every day. The ups are really great though, and for now they are very much outweighing the downs. But, with the IEP looming, we do have to stay on that seesaw and take the 'bad' with the good.

End of Year IEP Meeting

We had another IEP this afternoon. I called this one. We are not 'due' for another IEP until December (the goals should last a year and we had one to challenge Ruby's initial denial into the program last December), but with the school year ending, prep for another begins. I wanted to establish if Ruby would be returning to special needs pre-K, and in what capactiy, along with goal updates.

Prior to these meetings, there is always a lot of prep for Lehr and I. Re-reading her current assessments and reports, reading up on kids similar to Ruby in different settings, discussing what is working and what isn't, talking with other families to see how they are navigating these waters, praying, praying, praying... But even with all of that prep, this time we did not go in with a clear plan.

 Honestly, I felt very conflicted about what I hoped the outcome would be. We have pushed for as much inclusion as possible all along which would mean us requesting Ruby attend the typical preschool (Mt. Zion) 3 days/week, with a facilitator a few hours each week in addition to attending the special needs pre-K (Sope Creek) the other two days. However, she has done so well at Sope Creek in just four months. She is potty trained and has been with rare accidents since the first month, she has made friends that she has conversations with every day, and she is talking talking talking so much! Those great things (which didn't happen in the typical preschool) are so great that they make it hard to consider taking even a little bit of it away. She may still thrive that way with only 2 days/week next year, but what if she doesn't? And what if her typical environment is one that causes frustration again?

So with these questions (and many more) on our minds, we went into the IEP with a very open mind, ready to have a conversation with her teachers and therapists. We all agreed that Ruby has made a lot of progress in a short time, in all areas. (The teachers are so proud of how well Ruby navigates the classroom and fulfills her responsibilities with no prompting.) And we all agreed that next year she should continue that progress at Sope Creek. She will be eligible for the afternoon (full day) program as well. That program allows for smaller numbers (more one-on-one), and more intensive work to prepare her for kindergarten (handwriting, number work, etc.). However, if she stays until 2PM each day, it will mean her 2-4 therapies outside of school will have to take place after the big kids get home, making our afternoons even crazier than they already are. So Ruby will attend full day, but only on days she doesn't have therapy. (These last few months, it's worked very well for me to pick her up before noon and get her therapies done before returning home to receive Maddux from the bus.)

So that's the plan for next year and we are happy with it. Ruby's summer birthday means she could start kindergarten after next year, or after an additional year (starting right after her 5th or 6th birthday). Should we wait until the second year, her final year of pre-K might be a typical/special needs pre-K mix.

Here's what made me smile at the meeting. The team, Ruby's team, a speech therapist, an occupational therapist and her main teacher, gave lots of feedback with lots of genuine smiles. They told little stories and gave examples of her in the classroom or therapy that obviously brought them joy. They love my girl. They see my girl. They are proud of my girl. They get how much she loves to learn. They see how much she wants to learn and work.

Conflicted

Our holiday break was so nice. Besides seeing so much of my family for a whole week, the five of us got to hang out and not give a thought to anything responsibility related. For me, that was especially evident in the 'time off' from therapy and school conversations and research about this that and the other. And for Ruby that meant time for her just to be her. Amen.

But when we returned we had a lot waiting for us. A new school for Ruby and registration for next year for Ruby. All within three weeks. Ruby's new class, a special needs pre-K at Maddux's elementary school, started slowly, with a few holidays and snow/ice days, but it was obvious from the get-go that Ruby loved it. Unfortunately, the first full week she had was the same week I had to register her for the following year at her previous (private, 'typical') preschool. Unsure of what exactly to do, I opted to register her for the 3-year-old class, 3x/week. She will turn 4 just before the school year starts, but I think that may be a better fit for her than the 4-year old class, where she would be the youngest in her class.

So here we are, now a month into her current school, and I'm conflicted. I've always been very pro-inclusion. Always in favor of starting as we intend to go. Always on-board with Ruby participating with all of her typical peers. That's why she's been at a private preschool, and that's why we've signed her up for it next year as well. But in the last month, in an environment that we've not wanted for Ruby, we've seen Ruby blossom in a really cool way. She has picked up some new words, spoken out more in school (her speech at school resembles her speech at home now, and it never did in her private preschool), she is rocking the potty training, and she is happy!

It's so hard to know what the right thing is to do. Do we continue to push her to be in a typical classroom because that's what we want for her once she hits Kindergarten? Or do we let her stay in her special needs pre-K because we know she is getting more help with the things she needs help with there in an effort to best prepare her for the typical environment in a few years? Do we fight for her to be in the private preschool next year so that she can learn how to speak up for herself and learn by watching others? Or do we give her more opportunities to be with the teachers that are trained to help her learn her way?

Too many good arguments on both sides of this, and my brain hurts each night after running through the list of pros and cons on both sides constantly all day. For now, we have decided to continue to enjoy the great things we are seeing for Ruby in special needs pre-K. When we have our IEP in May, we will weigh everything again and see where Ruby is at that time.

The Aftermath

In the hours after the IEP, I was at peace. I felt good, very hopeful even, about this new venture. Today the reality sunk in a little more as I've had to deal with the effect of this new plan on Ruby's current schedule.

We went to one of her three speech therapists this morning and had to reschedule our upcoming visits. Not a huge deal, but it will make Mondays extra long for my girl. Then we had to go to Mt. Zion to break the news that tomorrow will be Ruby's last day for this school year. The director is and was amazing; she's seen us go through so many changes to schedule in the last two years and she's always walked with us, which is huge. But that didn't make it easier for me...felt like we were breaking up with them a little bit, even though we know we'll be back in the fall. And now I need to try to figure out a way to keep Ruby in some type of gymnastics program to continue building her core muscles for PT purposes. Not a big problem, just another logistical puzzle to solve.

I still feel good about our plan. I still feel like the meeting was a peaceful one where God clearly showed Lehr and I the way. But I am in a weird place...kind of mourning the plan we had, kind of anxious about what January holds for Ruby, kind of cautiously optimistic about our goals...searching for the light to lead our way.

Leaning on this verse:

James 1: 2-4   Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.

IEP

We had Ruby's IEP redetermination today. It was a long meeting, first reviewing the findings of all of the tests and evaluations, then determining eligibility, finally setting IEP goals for what Ruby qualified for.

Lehr and I attended, along with Ruby's speech therapist through the school, the Occupational Therapist that evaluated her, the school psychologist that evaluated and observed her, the Special Needs Pre-K teacher, and the community based facilitator. Ruby was along for the ride, eating a snack and playing in the Pre-K room the whole time. (I was surprised with how well she sat for most of the meeting!)

There were no surprises in the findings for us; they agreed that Ruby qualified for Special Needs Pre-K and speech and OT. When it came time to set the goals, things turned slightly. Not from what we expected as much as what we agreed to. For most of the time leading up to the meeting, we have been so solid on maintaining what we've set up for Ruby in the way of inclusion in the typical (private) preschool. That is and always has been our goal. But I felt a very clear vision was cast in that room that demanded a different path to that goal. The team wanted several goals for Ruby, which lined up very well with the ones I had prepared in the past few months. In order to reach those goals, they asked for Ruby to receive speech one hour/week and OT 30 minutes/week. The OT stated that Ruby's scores did not qualify her for that much speech, but she wanted her to receive that support to boost her abilities in the classroom without support. When it came to determining how Ruby's Special Needs Pre-K schedule would look, they suggested 5 days/week.

Yup. Big change.

That is not at all what I ever said I would do. It's not what I planned on. But this team set goals that I think will help Ruby get to full inclusion. Four of the members of this team have met with me and talked to me about my vision for Ruby. Four of the members of this team have observed and/or worked with Ruby already and know her strengths and weaknesses. One of the members knows the private school she's attending, and has worked with her teachers specifically. They are not basing their suggested plan on results from a one-day evaluation.

We want Ruby to be in the 3-year old class at Mt. Zion next year. In order for that to happen, she needs to be potty trained. It is embarrassing for me to admit that I have not been able to succeed in that venture, despite working since this summer. I am aware that Ruby's current schedule of Mt. Zion and speech and gymnastics and more speech does not allow for much consistency in the way of training, so this 5 days/week in an environment that supports that goal will help. Also, for Ruby to be successful in a typical preschool with other verbal kids, she needs to have more practice with attending to tasks and sit-down time for longer periods of time. She needs more practice with using her words to get her needs met. She needs more practice with fine motor skills regarding writing and scissors in a classroom setting (not just at home). The realization I came to in that meeting is that we can either address those goals for the rest of this year, or struggle through this same process next year.

I know there are no guarantees. And I know that some (maybe all) of these things are possible struggles for Ruby next year and years to come. But we've been working on them with our current strategy since June with progress, but not success. I think we owe it to Ruby to try a new strategy for this semester to see if it speeds the progress. It is not our intention to hold her back in anyway with this new plan; we see it as equipping her with an extra boost to return to Mt. Zion next year, better than ever.

The Build-Up

I have not been blogging as much the last few months. Life is busy, as it is for everyone. In addition to our regular 'busy', my downtime has been a bit consumed in praying, researching, planning, preparing, reading...all things associated with Ruby and what her schooling and therapy should look like right now. Specifically, when it comes to public services.

So we've been weighing the pros and cons of her speech therapy, of her extracurricular (gymnastics, soccer, etc.), of her private 'typical' preschool class, of her other speech therapist (who has also been acting as a facilitator on occasion in her typical class), so on and so on. When we started the process of Ruby's public school experience, she was not found to qualify for anything more than one hour of group speech therapy each week. We didn't agree with that (as we knew the reasons why Ruby scored so high were not a realistic picture of what her school experience would be), but recognized that the team that would ultimately work with Ruby, the team that was making these decisions, had never met Ruby - they had only seen the evaluation results from another team. So we agreed to give them some time (six weeks) once Ruby started services (speech) in the fall to collect the data they needed and then we would call for another IEP.

This process has taken a long time. That's a painfully long time for those of us that are impatient, especially when it feels like we've been waiting since May. In reality, we called for the IEP redetermination at the beginning of October, over two months ago. We met a few weeks later to discuss the path to get there, had a few new evaluations of Ruby (psychological and OT, and a new speech, based on her current level), had 2 or 3 observations taken of her in her private Preschool class, filled out more paperwork and online questionnaires about Ruby's levels, abilities, etc., had her teachers fill out more paperwork. All of that will culminate in a meeting for IEP qualification and redetermination this week.

It feels like we've been studying for finals all semester, but without a real clear picture of what subjects will be covered. Even though we received some of the reports from the evaluations, the interpretation of them from the team may differ significantly from ours. It did last May; Lehr and I did not expect to be denied services at that time, even based on her star-student evaluation. I don't feel this is an act of deception by the team, it's just the reality that Lehr and I are inexperienced in these types of meetings, so we don't know what to expect. Friends that have gone before us have mixed results, causing some cause for cynicism, but we are hopeful.

At this time, we are praying for a clear answer of what will best benefit Ruby. We think that is her private Pre-K with a facilitator 3 hours/week, in addition to speech once/week and OT once/week. Whether or not she attends special needs Pre-K also is something we go back and forth on; we are open to hearing the team's thoughts on how that works into our plan for Ruby's full inclusion for Kindergarten in a few years.

IEP

We had our first IEP (Individualized Education Plan) for Ruby today. It's been a season leading up to this, full of evaluations by the county, transfer of services from the county through Babies Can't Wait to the school system, etc. Today's meeting was planned to do two things: determine eligibility and make a plan (an IEP) for the service(s) for which she is eligible to receive.

When Ruby had her evaluation about a month ago, I knew she did well. The evaluation occurred at 9AM, which is a great time for most kids because they are well rested and ready to go, and it took place in a new environment with new toys. Pretty much the perfect scenario to get the best possible results from my girl. So when I got her report last week, it didn't shock me to see high marks on there. I didn't expect them to be as high as they were, but I also don't really know anything about this process since we are just starting out.

The meeting today started out with determining eligibility. There are several types of services available to kids: special needs preschool, individual or group speech therapy, and community based support were the three we were anticipating. I thought we might have to negotiate how much special needs preschool Ruby would attend next year given our push for her to be involved in her typical preschool classroom three days/week. However, as they interpreted her scores for us, it became evident that she scored *too* high for most of the services. She did not qualify for PT, as we expected. She did not qualify for OT, which we knew was a possibility. (I asked several times if she would be able to qualify next year, even if she didn't this year and the answer was 'yes'. I fully expect that her delay will be more evident next year.) The only area she qualified for was speech, and that is only for small group speech therapy, not the full-on preschool. (That also means she cannot receive the community based support, which allows someone to come to her typical preschool and observe/help/support from time to time.)

Here's the thing: Ruby's scores fell in a small little gray area between the 'norm' and qualifying. That sounds like great news because we didn't know she was capable of performing at that level. However, if what you want is to receive those services, this is bad news. (Especially since a blood test on Ruby should be enough to qualify her based on her extra chromosome. Her delays will not be remedied with a little therapy or time to 'catch up'.) Her scores only qualify her for 1 hour of speech each week. Sounds crazy to anyone walking this road with us.

I am choosing joy in this moment. I am choosing to see this as a reflection of Ruby's potential. I am choosing to see this as the result of her hours and hours of hard work. I am choosing to see this as a byproduct of Ruby's motivation and desire to learn.

I went into this meeting prepared to fight for my girl. To fight for inclusion. To fight for her to be able to maintain as much exposure to typical peers as possible. Instead I got to hold on to my fight for another day. Should we see that she's not benefiting from the current plan (which doesn't start until the fall), we will call a meeting to reassess. Should we see that she needs more (OT, behavioral) therapy and we think the school can be a viable resource, we will call a meeting to reassess. Should we see that this particular speech therapy is really helping and she needs MORE, we will call a meeting to reassess. It just didn't seem to be the right move to fight hard for more services (that we really weren't sure about anyway) before we'd had a chance to test drive them to see if they were worth fighting for.

Burn Like A Star

 "Burn like a star, Light a fire in our hearts" - Rend Collective

Ruby burns like a star. And how... She is the fire in our hearts.

Not just because she is the star in my tattoo, not just because she is a rockstar, but because she is constantly shining in the darkness around her as a pure light.

I love this song (Burn Like A Star), and it makes me think of Ruby every time. This week especially, she is shining like the star she is. My one-on-one speech time with her has been fairly productive in the last week, and I'm hearing words randomly more and more. Not always in the right order (tonight she said, "bye-bye, ook, mama, bye" as she waved to her "Llama Llama" book on the dresser after we read it"), and not always with full articulation ("ook" for book, "nana" for banana, "een" for green), but it's coming.

Today was her first parent-teacher conference. We requested an 'assessment' from her teachers a few weeks back in preparation for her Cobb County evaluation (which will lead to an IEP for her in a Special Needs Pre-K in the fall). The areas where Ruby was not performing as well as we would like were absolutely expected (speaking-related tasks). What wasn't expected was how well she performs for them with so many of the other 'typical' 2 year old areas. It would be easy to look at her assessment form, full of checks in all three levels of success (ranging from not successful to successful), and get down about it, but honestly, I'm super excited that there are plenty of successful checks!

Tomorrow Ruby will be evaluated by therapists and educators for a few hours while they take copious notes regarding her levels of speech, physical abilities, fine motor skills, etc. A report with their 'findings' will follow that, and we will have an IEP meeting scheduled. At this meeting, the types of services and frequency will be discussed and decided. There is much anxiety around this process, but at the moment I am pretty calm about it. Right now there is nothing I can do (nor do I know what i should/could do) regarding tomorrow's evaluation, so I'm just planning on a morning of seeing what Ruby has up her sleeve. If she's a rockstar (duh), then yay. If she's not giving them her full focus, then she qualifies for more. Sounds like a win-win?