Welcome to my blog!

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

Wednesday, July 19, 2017

Therapy day

Wednesday is therapy day for both kids. Lauren's summer therapy program is Mondays and Wednesdays. Ryan gets feeding therapy on Wednesdays.

Ryan did awesome today! He tried vanilla greek yogurt (with orange food coloring). All of those things are crazy for him to try. He doesn't like vanilla. He doesn't like yogurt. And the only thing orange he eats are Cheez-Its! I'm super proud of him. He gets done an hour and a half before Lauren, so I took him through McDonald's for pancakes and then we went to the park! It was really a great day.

Lauren had a lot of fun at therapy. She colored a little booklet about dinosaurs. Each page was a different dinosaur that she scribbled with a different color crayon. She was so proud of this! She ran out of class, sat on the floor in front of Ryan and me and said, "Let me tell you!". Then we got home and she showed Greg. I asked if he liked it and she said, "He tell me good job!" It's so fun to see her so excited and engaged. She did elope briefly on our way out of therapy, she darted forward, was ducking under adult arms and dodging kids left and right. She stopped right before the parking lot. I didn't bring Monte because we had a long day (left the house at 11am and didn't get home until after 4). I'm thinking that was a mistake and I gave her a little too much freedom. Regardless, I call it a win.

I've been a little overwhelmed with life lately, so if you're the praying type I'd appreciate some prayers or kind thoughts. Greg is working a ton and I feel like I'm shouldering the entire burden of childcare, home stuff, medical stuff (for both Lauren and myself). Plus working full time. I. Am. Tired. I'm so thankful that Greg has a good job, and thankful he's able to work so much. But I need more hours in my day. More days in my week. Maybe I just need a wife?

Friday, July 14, 2017

Choosing grace

Lauren's biggest behavior struggle is her impulse control. She is super impulsive and it can cause her to be unkind when she really doesn't mean to be. It's worse when she's constipated, so that's an added layer.

We went to the grocery store tonight, just her and I (plus Monte of course). She was SO sweet and affectionate. She hugged me, kissed me, told me she loves me, held my hand, rubbed my head. I cherish those moments so much.

She also took a bite out of several plums, almost bit into a radish until I caught her face with my palm, hugged a basket of bagels, and knocked on my face (imagine knocking on a door...except for it was my face). She also grabbed my grocery list and threw it on the ground multiple times. She tossed my credit card onto the conveyer belt three times. She got to pick a candy for not eloping (she chose to hold onto Monte's back instead of using her tether and I'm trying to give her a little independence). She then changed her mind and threw the original choice on the floor and stomped on it. We bought smashed peanut butter M&M's 😂 This was all while I was trying to unload our groceries and pay the poor cashier. He was so incredibly nice and I tried to explain by saying ,"We're just having one of those days". He said thats okay, he sometimes has days too. Another woman I thought was judging me in the produce aisle actually approached me and said her adult daughter has Down syndrome and just wanted to say hi.

It's so incredibly nice when people see a family struggling and instead of judging choose offer grace and compassion. I can't put into words how much I appreciate it. It made the difference between laughing and crying for me, and the truth is I was on the cusp of both by the time we headed up to pay.

Tonight as I rocked her to sleep she told me, "I love you mommy. You kiss me mommy? I hug you mommy". And then she said, "I pull your hair please mommy". Uh, negative on the last one. But seriously, so sweet!

Today was not easy but it was a day I really saw her sweet personality behind her impulsive behavior. And she really is such a great kid. We took her for ice cream when I got home from work (Ryan got to go to a Tiger's game tonight with my dad, sister, and nephew). She thanked us multiple times and was so, so adorable. She was so chatty all day. She told us "Red means go, green means stop", and then cracked up because she knows that's not right. She then said, "That's silly! Green means go, red means stop!"

I am so thankful for this beautiful and complex child. As others choose grace with us, I have to remind myself to choose grace with her and today was a great reminder for me.

Wednesday, July 12, 2017

Truth

I'm afraid of jinxing it...but Lauren's behavior has been great! We still have the "I not love you" if things don't go her way. But she and I went grocery shopping alone (no Monte and no dad) and it went awesome. The next day we went to the ENT doctor (she needs her tonsils out and possibly tubes 😣). The next day I took both kids and Monte to Target and everybody was awesome.

The small successes all in a row feel like a huge win! I don't know if I've shared this here in the past, but I have anxiety and depression. Medication certainly helps but it doesn't make it go away. Some days it feels like I'm under water with life and I can't quite reach the top.  Some days it's like swimming upstream just to do normal, every day, adulting things. But the good days? Those are hard won victories I will cherish and take whenever I can get 'em.


Friday, June 30, 2017

Struggle Bus

In the name of transparency, I'll just say it. This special needs parenting gig is HARD some days. Recently, most days. Lauren's behavior is really ruling the house and we don't go in public unless the planets align (and we have at least 2 adults present). She is so impulsive. This week she randomly dumped out a full can of diet coke I was drinking. And smacked a hot dog off the table (sorry Timmy 😂). It honestly didn't even look like willful behavior, it was like she just couldn't control herself.

Tonight was willful. She threw a full cup of water on the kitchen floor because it wasn't Sprite. She then completely redeemed herself by insisting that we do the Hokey Pokey together before bedtime.

Ryan has been SO amazing with her lately. He really seems to be getting that she just can't help it sometimes. It doesn't make her behavior acceptable, but it's extremely sweet to see him give his sister some leeway when she needs it. Their personalities are perfectly matched as siblings. She has no concept of personal space and he's fairly aloof. He helps teach her boundaries and she helps to bring him into our world sometimes! He is the best brother in the world. And she's the perfect sister for him.

I recently saw somewhere recently that Down syndrome isn't really a "special need" because every person needs respect, dignity, etc. I understand this concept and it's principles are true. But there's no denying that life is harder for us because of Lauren's behavior. She's different. She has special needs. But you know what? That's okay. It it doesn't make her less valuable as a person. I'm finding that it's okay to admit that I'm struggling and to admit that I need help sometimes.

Navigating the journey of parenting a child with special needs is winding, bumpy, and really freaking hard. It's really not a journey I would've chosen for myself. But it's always worth it. Without Lauren I would have missed so many hugs, so many kisses, and so much character building (that's how I'm now referring to frustration 😂). She has completed our family in the best possible way and I can't even begin to imagine my life without her.

On the days it feels like she's forever in the "terrible two's" I have to remember that this too shall pass and take each day as the gift that it is.

Saturday, June 17, 2017

Kids are expensive

The title says it all about our summer! Lauren is doing her normal summer therapy program this year! She will get OT, Speech, Academics, and Theater (to work on pretend play).  We're super excited, she's made great gains in the past with this program and we thought it would be great idea before starting kindergarten in the fall.

Ryan is going to be doing some feeding therapy this summer and possibly some OT as well. He still has less than 15 foods total that he will eat. And even with those, he's eliminating them instead of adding new ones. His fine motor skills are not awesome, so he'll get some help with this too!

Ryan is always amazing, but lately he has just been so dang good! His precocious speech is and always will be my favorite. We bought him a sketch pad at Target this week and he put back the one I grabbed and got a different one, saying "I believe this is more cost effective". LOL. How is one person so adorable?!

We had an awesome day with Lauren yesterday, which are few and far between lately. She was a perfect baby angel, save for a couple episodes of rude language (I don't like you, go away, etc) and hitting her cousin in the face with a plastic rake. I let her stay up super late and she finally had to ask me to put her in her bed! I love days like that so, so much.

We're currently enjoying a few days in Northern Michigan with extended family (Grandma, aunts, uncles, cousins, siblings, nephews, etc). It's always a great time. Greg and I are taking bets on how long we'll be able to stay (AKA how long Lauren will be able to stay). Our family is amazing and totally "gets" her, so if we have to leave early we know it's with no judgement. That is worth more than gold to this mama's heart. Some days I feel like it doesn't matter how hard I try, it's never going to be enough. But if we just accept that Lauren's behavior puts some limitations on what we can do, it tends to go better and cause me less stress. Ryan will stay for a whole week with my parents.

Saturday, May 20, 2017

We're at Disney!

We're in Orlando on a much anticipated family vacation and having a blast! It's the 5 of us (including Monte), Grandma and Grandpa (Greg's parents) and Uncle Blake, Aunt Wendy, and Baby Xander!

The kids did mostly awesome on the plane, save for Lauren getting bored and wanting to get up and wander around. Monte did AMAZING and I was worried for nothing, Delta Airlines was SO accommodating and awesome with him. They even offered him water and cheese (we declined).

We went to Magic Kingdom and Hollywood Studios and had so much fun. Lauren loved the Magic Carpet Ride. She and I only stayed at Hollywood Studios for about 30 minutes before meltdown city, we spent the rest of the day watching movies back at the condo. We didn't bring Monte that day and left him with Grandma and Grandpa, so I'm wondering if he wouldn't have helped a little with tolerating the sounds/sun/heat for Lauren. Ryan was super brave and went on Splash Mountain, Space Mountain, Hollywood Tower of Terror, and Indiana Jones! Monte did great at Magic Kingtom, it was super duper hot so we gave him plenty of air-conditioned shop breaks and lots of water.

The kids have really loved the swimming pools here at the condo and there's even a great splash park. The kids have been eating their weight in ice cream and fruit snacks, like in any successful vacation. It's been a really great time!

It's stressful for me because our house is currently listed (went active on Thursday). But at least we're not home while we're showing the house! We're hoping we get a great offer while we're gone so we can put that stress behind us a little bit. So please pray for that!

Another fun thing is that Lauren's speech is always improving and it's so fun to see that while on vacation. Lauren now says "Gwamma" instead of "Gaba". She asked for her glasses when she was sitting on the balcony so she could "see birdies". She has also started calling me by my first name which is totally hilarious and she knows it! Ryan has been a great brother and has been playing with her so much while we're in the condo and at the pool.

My heart is full!


Tuesday, April 25, 2017

Kindergarten IEP

We had Lauren's kindergarten IEP yesterday. We reviewed her MET and planned for services next year. Lauren's preschool team loves her so much and really believes in her capability, so it was awesome walking into a room full of people who believe in her.

Kindergarten will be in the cross categorical classroom, meaning there will be kids with different IEP classifications in her class, and it is considered a self-contained classroom. However, she got the same teacher I met a couple weeks ago and toured her classroom, so this makes me so excited! I know this teacher will help us to facilitate meaningful inclusion during her school day. We'll work out the particulars of that once the school year gets started. It's also going to be at the school I wanted, so that makes me really excited as well!

I'm really excited for her to enjoy the rest of this school year and get started in her summer programming (we do a private summer program that consists of academics, PT, and OT; this will be her 3rd summer). Then onto elementary school.

Where did the time go?

Monday, April 24, 2017

Meet Monte!

Lauren now officially has a service dog!!!

We're home and they're doing great together. So far Monte has joined us grocery shopping, out to lunch, and to a 2 hour IEP meeting (more on that later). We spent the weekend in Indiana training with the program. They have done a phenomenal job with him. He is awesome at tracking Lauren and as we practice this will only get better. I pray we never need him to perform this task, but history tends to repeat itself with Lauren (case in point, she eloped at Walmart in Indiana on Friday while we were there for training). We are so excited!

Sunday, April 9, 2017

Will there be Down syndrome in Heaven?

This is a question I've heard posed in the past and think about often. Will there be Down syndrome in Heaven? My answer is yes. Unequivocally yes. Let me tell you why.

The Bible says, in Revelations 21:4; "He will wipe away ever tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away." This verse is about the healing we will see in heaven. God does not promise us physical healing in this lifetime. Even those that are saved are not promised physical health. Jesus died on the cross to ultimately bring us spiritual healing and to allow us to be saved by faith; to allow us a personal relationship with God. He did not come here to make life easier.

I don't feel that Down syndrome is something Lauren needs to be healed of. In fact, it's not something I would take away from her. Of course I would wish to take away the struggles she will face; the teasing she will likely endure at some point in the future, the discrimination that is inevitable in a society that values productivity above all else. I would give just about anything to ensure this would never happen to her at all. But I wouldn't give up that extra 21st chromosome.

Lauren's diagnosis brought me to my lowest point thus far. I have never been so weak, so unable to grasp the possibility of a future, than when we found out Lauren would be born with Down syndrome. I was truly in the depths of despair. But the Lord shows is strength in our weaknesses. I felt so abandoned by God. I felt I must have done something absolutely horrible to deserve such a fate. I did not plan my life to include a child with special needs. Even after she was born and I fell in love with her, I searched high and low in my heart and in my past to try to find that elusive thing, the one that made me deserve her. The five stages of grief were alive and well in my brain. Denial, Anger, Bargaining, Depression, Acceptance. It was a five-act play that never stopped, didn't happen in order, and will likely never truly end. Denial? Not me, I'm too young and this only happens to other people. Anger? How could my God forsake me this way? Bargaining? I begged God to take this burden from me. Depression? I felt so utterly alone. Acceptance? I'd choose her time and time again.

The truth is, the stages of grief don't happen in order. Grief isn't linear and it's never really a finished process. Acceptance? Not a problem on days she speaks in full sentences, comes up with clever jokes, writes her name. Depression? The days her elopement takes over my life and makes me again feel so utterly alone. On those days I doubt myself and my ability to be a mother, much less her mother. Denial? My child is just the smart child with Down syndrome that's ever lived. Anger? Lets talk about how it feels when someone tries to limit my child. My anger might not necessarily be directed at Down syndrome during those times but it's certainly the root cause. Bargaining? If He would just make her a little less busy I could have more time to do things like read my Bible, be a better friend, a better wife.

If I took away her extra chromosome, I'd run the risk of taking away the very essence that makes her Lauren. What if she didn't giggle until she almost falls over? What if she didn't stamp her little foot when she gets mad? What if she didn't call us "MommyDaddy" like we're one entity? What if the twinkle in her eye that makes her look so very alive disappeared? What if she didn't make friends with every person she meets? These are her best qualities, things I never knew I needed in a child until it happened. On the flip side, what if we took it away and she stopped running from us? What if she could learn at the same rate as other kids? What if she'd been born without a broken heart? What if she were less stubborn and easier to parent? But the truth is there are no guarantees in this life for any person, any child, any situation.

The truth is, Lauren has changed me as a person in so many ways. I'm more patient (at least in theory). I'm more understanding of people's differences. When I had her my whole world opened up to things I'd likely never experience without her. I've met a whole community of other families who have children with Down syndrome and other disabilities. I have a job that is so much more than a job, a place that allows me to share in the triumphs and sorrows of families on a similar journey to mine. She took away my ability to hide my head in the sand from true sorrow and despair. But she's opened my heart to joy I thought was unattainable until she was placed in my arms. It is true that she's not easy. And our family faces struggles that many families will never understand. She is definitely molding our lives into something much different than I would have chosen in the beginning; for myself, my marriage, my son. But different is not always defective. She is exactly who she was always meant to be.

All of those things said, Lauren's purpose in life is no different than any other person's purpose. Her purpose in life is not to teach me about patience, kindness, goodness, generosity, peace, or love. Does she help teach me all of these things? Absolutely. So does Ryan, in a completely different way. Her purpose is not to make people smile, to change stereotypes everywhere (though I'm sure she's doing this too). Galations 5: 22-23 teaches us this, "But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self control; against such things there is no law." Having a child with Down syndrome, having Lauren, has taught me so much more about pursuing all that is good.

According to the Bible, man's purpose is to glorify God. And Lauren is no different. "everyone who is called by my name, whom I created for my glory, whom I formed and made." By this reasoning, Lauren is exactly who she is supposed to be. I can't imagine the Lord would change her in Heaven.







Revelation 21:4 He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”

Friday, April 7, 2017

More About Monte

Just 2 weeks from today we'll be in another state to get Lauren's service dog! We are getting very excited at the thought of being able to do normal family things again.

Lauren's most recent elopement was while just she and I were shopping about about a week ago. Luckily it was under 5 minutes. But until that, things had been going fairly well. I'd almost had myself convinced we didn't really need a service dog. She'd had small episodes, like running from us at the grocery store. Just today we went out to dinner and she tried to dart between tables and go...elsewhere. Rarely, if ever, does it seem like she's trying to get to a specific place. It can be kind of dangerous in a crowded restaurant with servers carrying heavy and hot plates full of food. I pulled my back today by carrying her at said restaurant. She only weighs about 40lb, but anyone that's picked her up recently knows it's kind of comparable to picking up a 40lb bag of water. She doesn't "help" at all. She asked Greg today to "hold me tighter!". She loves the sensory input of being held really close, but her low muscle tone doesn't really allow her to hold back. We're hopeful that her dog can keep her from eloping, but also provide some of that sensory input she craves.

There are just some places we can't go. Luckily we have awesome family that loves to come get Ryan so he can do fun kid things that Lauren's disability make very difficult for our family. Tomorrow his aunt is taking him to an Easter egg hunt! It's a large public event. We just can't realistically take Lauren to a place that encourages kids to run in an open environment. If there isn't a fence, Lauren doesn't know the difference between running away and just plain running. Sure, I could go and stand directly next to her and make her hold my hand. But then Ryan is once again kind of left to fend for himself. Ryan wants to go to our public library soon. It sounds so fun and I absolutely loved our local library when I was little. But again, it's a larger area with lots of shelves to hide behind. And then Ryan gets no attention, once again. We like to say that Lauren is a two-adult child. Really, if she's the only kid she's fine with one adult. But if there are any other kids, she needs somebody just specifically for her. Because we all know how quickly she can disappear. 

The practice of tethering is really controversial in the service animal world. And I get it, I really do. There are concern of injury to the dog and/or the child. We will always, 110% of the time, be working in a triad team with Lauren and Monte. This means an adult (me) holds his leash. And there's a separate "leash" connecting Lauren to Monte. She's not strong enough to drag/injure him. He can never just "take off" and drag her. We will always work as a triad. And the hope is that in time, with bonding, Monte will block her from running and alert us if she tries. But until then, we will be working as a tethered triad team. Giving Lauren the extra space to safely explore her environment has the potential to be life changing for her. Most 5 year olds are not required to be physically touching a parent at all times. But Lauren needs that reminder in order to not elope. And if she does elope from the house, or at a mall, or park, or somewhere else she may not be physically connected to Monte? He's trained in search and rescue. He has been working specifically with her scent. Specifically to find Lauren.

The feeling of your child being missing is something that can't be explained unless you've been there. Lauren's "big" elopement, where she was gone for over an hour and the police found her, I didn't even find out until after the fact. (I was out of town). And still, finding out this happened made me feel like my heart stopped beating. What if she gets hurt, or worse? What if she's kidnapped? She's so trusting of adults that it terrifies me. Parenting any kid is hard. Parenting a kid with a disability can be doubly hard...and exponentially rewarding. I view Monte as another tool in our toolbox to help us keep Lauren safe.


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!