Welcome to my blog!

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

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.