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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Wednesday, March 8, 2017

Lauren's REED...and new skills!

On Monday we had Lauren's REED (review of existing evaluation data) to discuss what kinds of evaluations will be done in the next month. (They have 30 school days from the REED to complete it and convene for the IEP).

It went really well! The only team member not there was the PT (because she was at a different building) and my husband (because he was at work). It was Lauren's teacher, her OT, speech, the school psychologist, and me. We decided to consent for cognitive testing this year. It's kind of a crapshoot whether they'll even be able to get a full scale IQ because she's only 5, but they will look at scores across the board to see where the data lands. The IEP classifications we're considering are OHI (otherwise health impairment), CI (cognitive impairment) and Speech and Language Impairment. She'll keep her speech classification as a secondary no matter what, but they're not sure if she'll pick up a CI label yet. She's currently OHI, which I'm not sure how long she can keep that in our state, but the team wasn't confident she'd qualify for a CI label yet based on upcoming testing.

The only person at the meeting that hasn't met Lauren yet was the school psychologist. And the rest of the team had such great things to say about her! Her OT said she's a hard worker who doesn't get frustrated easily, her speech teacher said she's a rock star and has a great attention span (when she feels like it). The whole meeting was extremely positive and I really felt like there were no "sides". Everybody there was on Lauren's side. I had the chance to ask questions, which was nice. The only real question I had was that if they were able to try to get a FSIQ (full scale IQ) if they would please attempt verbal and nonverbal. Lauren's a speech rockstar, but is still definitely behind her typical peers, and expressive language can affect scores. The team cautioned me that if Lauren's IQ score appears to be low, that they'll likely assume there were some struggles with cooperation and language. Lauren's doing awesome cognitively, and I'm glad her team realizes that and is already planning to take that into account when reviewing testing scores.

They asked me to review medical history for the psychologist. It makes me so sad to think about Lauren's rocky start, but I'm so thankful for how healthy she is now! Then we reviewed areas that create barriers to learning for Lauren (behavior!!!). We went over some new phrases she says a lot at school and at home, namely "I will do all of it!". She often refuses help even if she needs it, and if she's only supposed to touch one thing (like during receptive language testing) and she wants to touch all of them...well, she's going to touch all of them. She insists on turning every single page of all testing booklets herself. This will likely create a barrier to testing! I totally forgot to mention the issue of elopement/flight risk until Lauren's teacher reminded me. Duh! I explained that she's getting a service dog and reviewed with the team what specific tasks he will be trained for. The team was really excited for her and how he will help foster her independence (like not needing me to hold her/hold her hand and not having to be confined in a stroller for public outings). They asked if we planned on him accompanying her to school (we're not) and seemed open to it, which was pretty great. I figure they get one chance. If they lose her even one time we're asking for a para to handle the dog (he is trained to work in a triad team, meaning Lauren-Monte-Handler (generally a parent)). Can you imagine sending a fluffy dog to a kindergarten class and telling everyone they can't pet him? Me either.

It was a great meeting and her IEP is scheduled for April 24th. I've asked for a copy of all MET data to review prior to the meeting, which isn't what people generally do, but I'm legally allowed to do it. That way I won't be blindsided by results walking into the IEP.

As for new skills... Lauren is AMAZING!!! I'll detail some of the amazing new things she's started doing just this week.

-She wrote her name! We have her just writing "Lo", this is also in her IEP. We have a Boogie Board, which is this awesome tablet type thing that you write on and then push an erase button to make it disappear. She was using her finger and talked herself through it. "Big line, little line. Then a circle. That's me!"

- She sight read fish, dog, goat, and panda.

- She told Greg that Panda starts with P.

Saturday, March 4, 2017

Ryan

Ryan has been noticing a lot lately and becoming a lot more observant! He wanted to know why my blog isn't called Meeting Ryan. I assured him that I write about him too!

He "failed" his vision screening at school a while back, we just got the letter in the mail. So Monday afternoon he has his first visit to the eye doctor! He was mad when I told him because he was afraid people will make fun of him if he wears glasses. Then he told me that everyone at his school wears glasses, so I wonder if maybe he's just nervous in general and wanted to argue about it. I've actually been wondering lately if he was having a hard time seeing things, plus he gets headaches, so I was not at all surprised when the letter came home. If he needs glasses he is going to look so adorable!!!

He is turning into such a man lately. He has a YouTube channel (heavily monitored by mom and dad). He's building Legos like a champ. He's doing great in school. He has a new friend at his table in his class, she's from the VI program (visually impaired). I am so excited about this!! He asked me what VI meant so I explained it meant visually impaired, which just meant she has a hard time seeing. The advocate in me had me wanting to ask him what kind of accommodations she gets, if she has a para, if she goes to resource room, if everyone's being nice to her...but he's 7 and honestly doesn't care what kinds of accommodations she has, lol. His teacher put her at his table because he's such a welcoming boy and used to kids being a little different. Proud mom moment!

My heart is overflowing with love for this boy.

Thursday, February 23, 2017

Result of the Meetings

So I had all 3 meetings this week and came to MUCH different conclusions than I expected.

1. Private School
I loved the private school! I have nothing bad to say about it. The only downside would be the logistics because it's not at all close to where we live. And it's $8.5k a year. And it only goes up to kindergarten so we'd be back to square one next year.

2. Charter School
I was overall simply unimpressed. There was nothing overtly bad about it. But nothing wow'd me. I felt like the principal was really skeptical that it could work for Lauren. The building itself seemed dingy. And the one interaction between a teacher and I student I observed was less than friendly. There were some kids inside that didn't "earn" the recess time, and that's who I observed. It's not for us.

3. Public School
I was pleasantly surprised! I went into the meeting thinking I'd already know what they'd say and that I knew I didn't want it for Lauren. I was wrong. They presented 3 options. 1. Young Fives (not kindergarten curriculum, not special ed supported, and half day). 2. Gen ed (could include resource room time, speech therapy, and occupational therapy per IEP goals) 3. Cross Cat/Center program. The center program fully follows the kindergarten curriculum and common core standards. The ratio is smaller 3-4 adults per maximum 15 students. The teacher then has the ability to work with kids 1:1 in reading and math. For handwriting, science, social studies,etc there is 2-3 adults to circulate the room and help as required. They "scaffold" the material to teach it several times and in several different ways. There's a speech therapist in the classroom for the majority of the day.
We're familiar with gen ed because Ryan just did gen ed K last year. It's a lot faster paced with a much larger teacher ratio 1-2 adults to 26ish kids.
This was presented as either/or.
I asked about doing part of the day in center and part of the day in gen-ed. I actually really liked the answer! They said they do have some kids who do part day gen and and part day special ed. They said they have a couple kids who do about 1/2 hour in gen ed and the rest in special ed. But I spoke with a center teacher after the meeting and she currently has a student with Down syndrome in her class who does about an hour of gen ed plus specials with gen ed, the rest in the center program. I LOVE this idea. She said the parents went in asking for full day gen ed. I'm thinking they probably knew they wouldn't get that and "settled" for what they actually wanted. Smart parents!
I asked about the difference between the CI (cognitive impairment) and Cross Cat/Center program. Basically you have to qualify for CI, which is for kids with moderate-severe cognitive impairments. We were told last year that Lauren would likely not qualify and this would not be presented as an option to us.
I expressed to Lauren's speech therapist at the meeting that my main concern is Lauren having peer models. I said that I don't think gen-ed only is the right choice for her (speech therapist agreed), but I also don't think she will have enough peer models verbally in the Center program (speech therapist also agreed and said that socially, Lauren is more of a peer model). So I'm thinking we may not be getting as much push back as I was expecting when I ask for gen ed time.
I asked about gen ed plus resource room as an option. They said that while this is an option, there could come a time that so much resource room support is needed that it's practically a self contained classroom. I could see this happening with Lauren. Academically she is nowhere near a typical gen ed kindergartener. While we're expecting that Lauren's cognitive impairment is mild, she is still cognitively impaired. I can't ignore that.
I also asked about plans to get the gen ed kids and center kids together. Currently at one of the schools in our district there is a buddy program in place. I only learned about this at the district meetings I went to when they were deciding where to move the special ed programs (two schools closed and programs were shifted around. The special ed program was moved from two schools to do different schools). I heard great feedback from 2 gen ed kids who really loved having a "center buddy". The district coordinator said they are actively working on ways to implement that at the new schools in the fall.
I really liked what they said about placement. They said that while the team (current teacher, speech therapist, occupational therapist, and district special ed coordinator) will make a strong recommendation, placement is ultimately up to the parents. This is true based on IDEA law and I love that they were very up front with this.
Greg and I both really liked the private school option. But logistically and geographically, it's not close to home. And we'd be back at square one for first grade. So we're thinking that if the district is willing to meet us halfway and give us minimally an hour plus specials of gen ed time, we'll choose our home district.
Overall, I really am surprised at our current decision! I did not expect to at all like what the district had to say. But I was very impressed! I have a meeting early next month with the team to discuss cognitive testing, then the IEP will be hammered out and decided upon. Then we can make our final decision.









Wednesday, February 15, 2017

School. A little (or a lot) soapbox-y

Next week I have THREE kindergarten planning meetings for Lauren. We're currently considering three options for school for next year.

1. Public school. Our district is going to offer us special education kindergarten. It's still kindergarten, but at a slower pace with less kids. It's called cross categorical or cross cat. Or simply, the center program. In theory I don't have a problem with this. Except for that I don't understand why gen-ed kindergarten isn't being offered as an option. It's kindergarten, not higher level learning. Life is not segregated. The kids in this classroom have varying IEP classifications. In some districts, this kind of classroom can be used as a "catch all" for the kids that either don't quite fit anywhere else (emotional impairment, otherwise health impaired, etc) or for kids whom their classification classroom doesn't have a spot for them (if the ASD rooms are full). Or it can be used very appropriately for kids with mild cognitive impairments. I am not against this placement. I am against only this placement. Our district doesn't have mild CI classrooms. I asked about gen-ed time if we choose this program and I was told "they don't do that". Hmm. There's a kindergarten planning meeting on Thursday next week for parents of kids currently in special ed preschool in our district. Both center teachers and gen ed teachers will be there.

2. Charter school. There is a charter school in our city that does Montessori. They use a full inclusion model, but I'm not sure exactly how equipt they are for a kid with a mild cognitive impairment, like Lauren. Do they have a resource room? Do they have speech and/or OT? I'm not sure. I have a meeting with the principal and the special ed coordinator on Wednesday. I don't know a whole lot about this school, but I love their attitude about inclusion.

3. Private school. I'm going to a kindergarten open house for a private school in our area on Tuesday evening. This school only goes up to kindergarten, so we'd be in the same spot as we are now at the end of next school year. This school is 100% pro inclusion. They keep spots open for kids with special needs. It's an awesome program and I've heard only great things about it. It is, however, expensive. I'm not sure how expensive yet, but I'll likely find out next week. Another con is that it's not in our city. A huge plus for this school is that it shares a building with my work. I love the thought of being so close to Lauren every day even if I'm working at she's learning.

We'll have to see what information the meetings bring. I'm wary of our public option simply because I think Lauren CAN be successful in a gen-ed classroom. Obviously her work would have to be modified. But socially, emotionally...she's ready and she'll be fine. She's already been in the classroom for 3 full years. Lauren is doing really well cognitively. Her receptive language scores are low for a typical kid... but really really awesome still considering she is not a typical kid.

Another big concern of mine is that if we don't try gen-ed now, chances are we never will. The gap is just going to get bigger because development is a moving target. I think it would do Lauren a huge disservice to not even give her the chance to succeed.

Lauren will have cognitive testing next month. We consented to the IQ test, which I know is pretty hotly debated. But I'm a person who likes to see things as concrete as possible and I think being able to look at her strengths and weaknesses academically will help us to make the right choices. At her age, the best indicator if IQ is the receptive language score. Last year hers was great. I'm curious to see what it looks like this year. Either way, we're pushing for inclusion because studies show that kids with Down syndrome do very well with inclusion.

http://www.wrightslaw.com/info/lre.incls.rsrch.whitbread.htm

http://www.educationworld.com/a_curr/curr320.shtml

http://www.naset.org/782.0.html

I understand that funding is frequently an issue. But quite frankly, that's not my problem. Tax money is slated for education. My child, by law, must be educated. And the federal law indicates that the least restrictive environment is where a child should be placed. How do we know how little to restrict if we never even try it?

Let's look at some of the verbage used in the law. I don't think this is unclear at all.

Least Restrictive Environment (LRE) is the requirement in federal law that students with disabilities receive their education, to the maximum extent appropriate, with nondisabled peers and that special education students are not removed from regular classes unless, even with supplemental aids and services, education in regular classes cannot be achieved satisfactorily. [20 United States Code (U.S.C.) Sec. 1412(a)(5)(A); 34 Code of Federal Regulations (C.F.R.) Sec. 300.114.]

In all honestly, this is kind of a switch from my previous way of thinking. I previously felt that special education alone was "good enough" for Lauren. I didn't (and still don't) expect her to earn a high school diploma. However, I feel like I was selling her short a little bit. She is smart, she is capable. She loves to learn. She loves school. She loves to have friends and be included. I do still feel like her most meaningful friendships will be with others that have disabilities like hers. But why does that need to happen in a separate environment? When she grows up and gets a job, or goes to a post-high school program (there are tons available and more popping up every year), or runs errands out the community she will be in our community as a whole, not in a separate disabled community. And I truly believe that Lauren, along with everybody else with a disability, has the capability and potential to be a contributing member of her community. That will likely look different for Lauren than it will for her typical peers, but different does not mean less than.

Saturday, February 11, 2017

She's FIVE!!

I can't believe she's 5 years old. Didn't I just have her? She's currently sitting next to me on the couch asking me a zillion questions while waiting for Signing Time to start. It's so much fun to spend time with her!

Her biggest strength right now is speech. I couldn't even hazard a guess as to how many words she has. Her spontaneous speech is awesome. She is extremely sassy and talks back just as much, if not more than, any other five year old. And I have to say, I did not anticipate that! Here are some examples of a few funny things she's said lately.

Lauren: I want to go swimming! (She came up to me completely naked. She was dressed 2 seconds before this).
Me: No Lauren, we're going to Kroger! Go put your clothes back on immediately!
Lauren: Are you kidding me?! I can't!

Me: Alright Lauren, it's time to go to school!
Lauren: I can't go to school, my teacher is sick! (not true)
Me: Well, then we should go to school and tell her to feel better!
Lauren: Mommy, you can just talk to her on the phone.

And then today she told me, "When daddy get home from work I listen to mommy!" I asked her if she could just listen to me now. She said, "Uuummmmmm..." It was definitely a no.

She's a huge bedtime staller and her excuses are so typical. "But mommy, I so thirsty!" "But mommy, I so hungry!" "Mommy, it's so dark! I can't see my big toe!" (Okay, maybe that last one isn't so typical)

Speech is definitely her biggest strength right now. It's so much fun to have conversations with her and I love hearing about her day. She is a total chatterbox and I absolutely love it! There are times I would love just 5 minutes of silence, but I really am so thankful that her speech is such a strength for her.

She currently loves ketchup more than anyone on this planet loves anything. It's absolutely disgusting, lol. Today she force fed me a goldfish cracker dipped in ketchup against my will. She regularly smells like ketchup. She's still a champion eater and will eat pretty much anything except for broccoli, and even then she'll sometimes surprise us! She loves movies. Her current favorites are Secret Life of Pets, Frozen, Inside Out, Toy Story 2, The Incredibles, and Finding Dory. She is still head over heels about books. She loves to go swimming. She still really loves animals and is so excited to get her service dog in April.

We celebrated her 5th birthday last weekend with a Frozen themed party! She got a couple of preschool workbooks. She loves to do "homework" when Ryan does his. We mostly just have her tracing shapes and lines. She's not tracing letters yet. Fine motor skills are definitely a weakness for her. We're working on this with wooden block letter puzzles. She's so good at them! It's been amazing for letter recognition as well! She is hit or miss with behavior. She's awesome for everyone but me, it seems like. I know this is 100% my fault. I'm way too easy on her. Her go to apology for me is "I sorry mommy. I won't do it again". It's so adorable and totally not true because whatever she promises not to to again, she does. She still really struggles with being impulsive, which includes running from us. It's easier in the winter because we're just out less. She's also less likely to try to get out of the house in the winter.

She can spell "cow" like a champ. Pig is usually correct. She did, however, recently spell hen in an interesting way..."C-I-5"! She was so proud of herself, too! She's doing awesome at recognizing letters out in the community. C, O, W, E are currently her best letters. She's counting to 10 when she feels like it. I honestly thought she couldn't until our pediatrician told her to do it. She still loves school, but every Wednesday (when I'm home) she tries to get out of going. She doesn't usually tell us about her day, opting instead to say "nothing" or "I only want mom!" But today she told me that she is a diamond and her friend Hope is a circle. I'm assuming they're assigned a shape at school but she could totally be making this up!

Her health has been pretty stellar, save for a bout of the GI crud that was going around. She recently had a sedated CT scan that ruled out atlanto-axial instability. We got the all clear right before Christmas!

She is such an amazing little girl and I still can't believe she's mine to keep. She still prefers me over daddy most days, which I love so much. I'm absolutely positive nobody in the whole world will ever love me more than she does. And nobody could ever love her as much as I do, though she is super easy to love. She always tells me I'm her best friend, though she is indiscriminate about who she says that to. Strangers, airplanes, dogs, cats, trees, are all "best friend!". Ryan is an amazing big brother and is so incredibly patient with her.

Saturday, January 21, 2017

A little bit overwhelmed

I have not been blogging much at all lately. Life is too busy and to be completely honest, I'm finding myself extremely overwhelmed a lot of the time. Greg's working 60 hours a week. I'm working 40 hours a week. The kids are both in (different) schools. There is grocery shopping to be done. Meals to be prepared. Homework to be done. Baths. Bedtime. Everything that comes along with a busy family and two working parents. Lather, rinse, repeat. I. Am. Overwhelmed.

Having a child with a disability is hard sometimes. It makes me feel guilty to admit that. I'm working on this in therapy, my feelings of guilt. I love her so much and I wouldn't change a thing about her, but love doesn't make it easy. She needs so much attention that I often feel like Ryan is neglected. I feel guilty about that. But in fact, I know he is neglected when we're out in public. The constant fear that Lauren is going to dart away and get lost, get hurt, get kidnapped...it demands 100% of my attention sometimes. Ryan is such an awesome kid and almost never complains about it. And when he does complain about it... I try to just hug him and say, "I know".

The kids and I went to a birthday party a couple weeks ago and it was so much fun. It was for one of Ryan's friends. We'd planned on dropping him off, but Lauren and I were invited to stay so we stayed. She did better than I expected, but at one point I was trying to feed our tickets into the ticket counter, Lauren was overstimulated, and she tried to run. I hear Ryan shouting for me. He had grabbed Lauren around the waist and sat down. He was yelling for me to come get her. She was crying because she was mad, he was getting upset because she was crying. But he was trying to keep her safe and he did. He kept his sister safe. I love that he is such a good boy but I sometimes feel bad because he's only 7 and I don't want him to feel so responsible.

Today, however, was a great day. The kids let me sleep until 9am. We played the game Sorry. We went to McDonalds (only the healthiest food for our family). I successfully used Netflix as a babysitter so I could take a shower. I took the kids to a play at a local high school. They did great at the play! Lauren didn't even just do good "for Lauren", she did awesome. She was totally enthralled and even shushed me for coughing. Ryan did great as well, of course. They both really loved the play. It was You're a Good Man, Charlie Brown.

It's not at all like things are all bad. They're not even usually bad. Ryan is doing awesome in school. He's been so sweet and polite lately. He lost another tooth today (and the Tooth Fairy had to steal a dollar from his piggy bank because she has no cash, haha). Lauren is doing so well and is speaking in full sentences. I made the mistake of trying to hurry her along when getting her in the car. She said, "Don't be mad mom, I'm trying!" Ryan said {insert 1st grade bathroom humor} in the car and she told him, "Don't say potty words Ryan, Daddy will spank your butt!"

The kids started swimming lessons this week and it was seriously so great. They both loved it and Ryan's confidence in the water has really soared. I'm so incredibly proud of him, water was a huge fear until recently. He told me he wants to try to put his head under the water soon! And he asked to go to an actual kids salon for a real haircut soon! He has sensory processing disorder, so this is MAJOR. He might not be able to do it, it might not work out. But he's asking to try. My heart is overflowing with love and pride for this boy.

So yep. This is me in a nutshell lately. I miss my blog. Writing is my outlet and I've been struggling to find time for myself that doesn't include sleeping.

Service Dog

Those of you who know us in real life or on Facebook know about Lauren's struggle with elopement. It's been absolutely terrifying. Words cannot even express the fear that comes when your child disappears. It's not poor parenting, it's not inattentive parents. It's a very real part of disability and something a lot of autism and Down syndrome families struggle with every day.

Lauren is getting a service dog this spring! He will be trained to prevent her from elopement. He is also being trained in search and rescue so he can locate her if she does elope.

It's all private pay. We were fortunate to find an awesome organization that while still expensive, is much less so than other larger organizations. Some service dogs cost around $30,000! Lauren's dog, Monte, will end up costing us right around $7,000. More including travel, as the program is out of state.

We've been there once to meet him, the program director, and his trainer. We'll travel again in late April to train and then bring him home. So you'll all be seeing us with a very important addition in the near future!