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

Friday, November 17, 2017

I'm a good mom

"I not love you!"

Sigh. I got home from work around 6:30, and this is what Lauren greeted me with. So, it was going to be that kind of night? I was so tired. I worked over 40 hours this week and had a good 45 minute commute home due to traffic and road closures. I just wanted somebody to be nice to me! I was not prepared for that kind of night.

It really wasn't though. I told her that we have to be nice to our family because our family loves us. I was then on the phone with my sister about 20 minutes later, and Lauren asked who it was. I told her and she said, "I like her! I be nice!"

She wanted new pants because there was a tiny hole in the knee of her leggings. As we were changing, I asked her if she fell down at school (she did, she fell during PT and bumped her head, nothing serious). She told me, "Nope! Henry fall down at school. He not hurt his back neck, he hurt his front neck! (pointing to her own throat). He cry! No blood." It took me a good 5 minutes to understand she was saying Henry, so she was mad about that. I also have no idea if that's even true, also how he would fall and hurt his "front neck" I have no clue. But she was very animated telling me about it!

Then she told me, "I eat snack after school. I get ketchup everywhere! Dad be mad for me." And lo and behold, she really did have a full plate of ketchup at the kitchen table. She is getting so good at re-telling events!

We sat down for dinner and she told me she was cold, which actually means she wants me to get a blanket and wrap it around her like a poncho. Then she told me "I can't use my hands! You hafta feed me!" What's a gal to do? I fed her a couple bites of tortilla chips dipped in ketchup...to my little girl wrapped like burrito in my fancy decorative blanket that I didn't want the kids using, smiling up at me like I just hung the moon.

She then told me, "Mommy, I tired." So we put on her Christmas jammies and talked about what she wants to ask for from Santa. She wants a baby doll and a batman! She gave me endless hugs and kisses. She gave her dad enough kisses to be obnoxious. She hugged her brother before heading into her room.

We had a little tea party before bed with me, her, her stuffed lamb, her stuffed Max (from Secret Life of Pets), and her garage-sale-find life size Barbie. Today ended up being a really good day. We have days where she seems so distant, almost like her true personality is locked way. And then we have days like today, when she's just so with us! She was so animated, she was signing dancing, she was teasing her uncle, and engaging us in conversation. She told us stories about her friends at school. I live for these days.

As I rocked with her before bed I realized something. I am a good mom. Even on the days it's hard. The days that I just can't wait for bedtime. Even though I mess up every single day and end up inadvertently reinforcing her bad behavior by just giving in. Even the days she goes to be mad at me for not giving in.

It's no secret that Lauren is not an easy kid. She is very busy. She wakes up full speed and stays there until she tells us she's ready for bed, luckily she likes to go to sleep early. Some days are emotionally challenging, physically challenging, and make me feel like I'm failing everyone I'm responsible for. But on those days, I need to remember that I am a good mom. I love her more than life itself. Lauren is loved, and she knows it. Even when she doesn't feel like she loves me, whether that's because something frustrated her before I got home or because she had to poop or because the planets didn't align, I really do believe that she knows I love her enough for both of us.

If there is one thing in this life I know how to do, it's how to be her mom. That doesn't feel good every day and in all honesty, I don't like it every day. Sometimes my heart and my soul feel crushed by the weight of my failure and I wonder why God thought I was capable of being Lauren's mom. Those are the days I need to remind myself that she never feels that weight. She doesn't feel like a failure at all, she doesn't wonder why I'm her mom. She just knows I'm here, she knows that I love her, and she knows I'll be there that day, and the next, and the next. "I not love you" to Lauren means, "I'm frustrated and I don't know how to tell you" or maybe it means "my belly hurts and I don't know why" or maybe it means "I woke up crabby and I'm taking it out on you". It might even mean, "I'd rather have dad right now". But the hugs I get at bedtime, the smiles I get for giving her a new cup of water, the way she rubs my cheek and tells me I'm adorable (she really does this, it's ridiculously cute), those are the ways she tells me she loves me, even on the days she can't say it with words.

Sunday, October 22, 2017

October Update and pondering about foot surgery

Lauren is about 3 weeks out from surgery and doing awesome. She's off all pain meds, constipation is resolved, and she's super happy to be back to school. Before bed tonight she told me that she really likes kindergarten, then told me all of her friends names (some of which I couldn't understand) and named her teacher twice! She really loves her teacher (so do we). She also told me she really likes the safeties and they're her friends. There are a couple of "safety" kids (4th graders) that go out for recess with the kindergarten kids. I'm honestly unsure if they always have, or if that's new since the elementary school only just started housing the special education program. Either way, Lauren absolutely loves them and I think they really love her too. Her teacher communicates multiple times a day via an awesome app and sends pictures. Once I got a picture of Lauren and a classmate or two smiling with a safety. It was really awesome to hear her talk about them. I LOVE when she tells me stuff about school, she usually just says, "Nothing, I'm tired". So to get so much info straight from Lauren is pretty great.

Lauren's behavior has been pretty good lately. We still have our snafus here and there, but overall, I truly can't even believe the difference since we started her on medication in early September. She was with grandma today and only got 1/4 tablet in the morning instead of her usual 1/2 tablet. She was like a (very adorable and sweet) wild animal this afternoon. She was literally carrying our large, metal kitchen garbage can around the house. And impulsively pinching my face. It got better after her normal afternoon dose (she takes it twice a day). I'm afraid to jinx it, but she has barely even tried to elope since we started medication. She's still wandering sometimes, but she's rarely bolting away from us anymore. She's still definitely a two-parent kid when out in public, but it feels less overwhelming. I found out recently that her medication is on back-order from the manufacturer and had a mini-meltdown. But I managed to stockpile and I think (and hope) we're good for a while!

Ryan's getting more acclimated to his new school, but it's not going as smoothly as we'd hoped and he's struggling a bit to make friends. I haven't posted a lot about it because I'm respecting his privacy and he'd hate for me to write about it. But if you have prayers or good thoughts to spare, we'd appreciate them. He does have a couple of new friends now and things are looking up!

Now about the foot surgery. I've posted before, we discovered recently that Lauren has a congenital bone fusion in her left foot. After Lauren's tonsillectomy, I was so upset about how she was in the recovery room and so upset about how constipated she got, that I had kind of told myself that we weren't going to do the foot surgery she needs. I'd almost had myself convinced that we could wait a couple years because it's not so bad. Buuut of course reality has kicked in. The orthopedic surgeon said we should schedule surgery when it's causing pain and impacting function. I'm kind of unsure about pain because I truly do think she says, "My leg hurts, I can't walk" when she doesn't want to walk. But she's not faking the limp and she's not faking falling down a lot. Her limp tends to be more pronounced at the end of the day (not surprising) but it's pretty obvious all the time if you're looking for it. Watching her run is terrifying because we can see her left foot turning in and there's a 90% chance she's going to trip and fall. It's not like it's really limiting her activity at school, by all accounts she plays on recess and walks fine at school. But after school and on weekends we feel like her limp is pretty pronounced and she is voicing pain. How the heck do we know if we should believe her?! My original plan was to do the surgery in the spring so we could avoid wrangling her wheelchair in the snow. But now I'm questioning that because her whole summer (6 weeks in a non-weight bearing cast) will be less than fun. We want to go camping, and she loves swimming. And if we do it in the summer, I'm probably stuck home for longer because we're using a daycare facility over the summer and I doubt they're going to be gung-ho on taking on a kid with special needs and physical restrictions/toileting transfers,etc. The hardest part is going to be figuring out how much time I really need to take off work (I don't really want to take several consecutive weeks off of work, but it's likely that grandparents aren't going to be able to lift her). I may just adjust my hours at work during her recovery period, like take a couple weeks off right away and then just making sure I can get her on the bus because there is no way in heck I'm keeping her home from school for as long as she's in the cast.

I wish a magical decision-making fairy would just tell me what the right decision is for when/if to schedule her surgery. If she was in serious pain and refusing to walk all together, I wouldn't even hesitate. I honestly don't even know if I believe when she says it hurts. And her limp is impacting function for sure, but enough to schedule the surgery? I just don't know. The thought of if/when to do this consumes me. This part of parenting is not in the manual! (Seriously though, if kids came with an instruction manual parenting would be so. much. easier.)


Oh, and here's a picture of me and the husband. He says I never post about him, so now I am. We have amazing parents and managed to sneak away for a kid-free weekend to Grand Rapids. We were total tourists and did a beer trolley tour of breweries. We slept in, drank too much, and remembered why we like each other so much.

Saturday, October 7, 2017

Tonsillectomy

Lauren had her tonsils and adenoids removed on 10/5. I was so scared and almost cancelled multiple times! I had mine out almost 3 weeks ago and I'm still not feeling back to myself yet.

She's doing way better than I did. As long as I'm not late with giving her pain meds, she's really doing fantasic. Nobody's sleeping because I'm waking her up every 4 hours for meds, but it's 100% worth it to make sure she's not feeling badly.

The surgery went great, no complications. She is, however, apparently one of those people that wakes up from anesthesia really agitated. As soon as we got a glimpse of her I knew it would be a nightmare. She was agitated, out of it, and her OCD was in overdrive. She was refusing to drink anything so we were thiiiis close to being admitted. Her OCD was largely centered around the tape holding her IV in. She just kept saying 'I want it off. I want it off. I want it off.". She couldn't stop moving her arms and legs. It was bizarre. I felt so helpless because nothing I was doing or saying was helpful. She didn't want to be touched. She finally drank some water so they were willing to pull the IV. Then she wouldn't let them touch her. Luckily, she was willing to let me do it and the PACU nurses were comfortable with this. Thank GOD I'm a nurse!

So yeah, about that being a nurse? I mean, I knew this already, but it is so different when it's your own child. I had to step out of the room for a second and totally lost it. I was sobbing, it was so so sad. I know that in comparison to her medical/surgical history, tonsils and adenoids are nothing. But I'm a firm believer that there is no such thing as a minor procedure when it's your kid.

She's feeling lots better and I am so thankful everything went well.

In all honesty, it's making me re-think doing the surgery she needs for her foot. She get around pretty well and hasn't complained of a lot of pain lately. We'll have to play it by ear. I feel like a horrible mom for saying that, but I'm terrified of going through that recovery process again.

Tuesday, September 26, 2017

Service dog update!

I thought I blogged about this, but I just realized I didn't! Here's a good explanation of how Lauren, Monte, and I work as a triad team.


The thin leash on the left is attached to Monte's head collar. (It can look a little like a muzzle, but it's similar to a horse bridal in that it just allows us to "steer" him by the head rather than his neck. He can open his mouth fully with this on.) I always have full control of this leash, I wear it as a hands-free leash, it goes on like a cross body bag, so I have full use of my hands (necessary for all kids, especially kids like Lauren, lol).

The thicker leash you see on the right is connected around Lauren's waist and attaches to a silver loop on Monte's pack. This physically stops her from eloping. He will either stand and refuse to move or lay down if she tries. Generally, if we're just all walking, he just walks at a normal pace. If she starts to bolt, he resists and then I can then stop and talk to her, get more on eye level, and try to talk through the problem.

When they aren't tethered, he will stand in front of her and physically block her from eloping. He's only actually had to do this a couple times. The truth is, when he's with us, she's much less likely to run. She loves him and he gives her a sense of purpose and responsibility. There's a small handle on his pack that she will sometimes hold onto. Other times she'll hold onto his leash with me. Other times she will just rest a hand on him. Other times she will just walk next to him. This can be tricky, because usually then he tries to block her (even when not neccesary) and just gets in front of her and she gets irritated. It's a bit of a work in progress, I think he feels like he needs to be touching her or connected to her while we're out in public. Lauren generally goes with the program! The only time we really force the tethering on Lauren is if we're somewhere where we KNOW it's going to be hard for her. Church is rough because it's loud, crowded, and generally a huge trigger. Places like Target, etc that can be quieter she tends to listen a little better. But she also knows she gets no chances. If she tries to elope, they get hooked together. And sometimes we give her a choice and she will choose to be tethered to him.

My picture says autism anchor dog. That's technically what Monte is. Lauren doesn't have autism, but kids with Down syndrome can (and Lauren does) share a lot of characteristics with someone on the autism spectrum. Lauren tends to elope, she has sensory issues, she wanders (different from eloping), she has meltdowns. Monte helps her with all of this. The sensory input of Monte's fur helps give her sensory input. If she's freaking out because something is loud, or hurts, or is bothering her, she can pet or hug him and he calms down her overactive sensory system. He blocks others from getting too close to her during a meltdown or when we're out in public. (As you probably know, Lauren is not your "they're always so sweet" kid with Down syndrome. She likes her personal space from strangers.) He stops her from eloping (running away). He stops her from wandering (aimlessly wandering away from us because she can be so off focus and off task that she doesn't generally realize that she's walking away from us and into danger).

Basically, he's her lifeline. Where she goes, he goes (outside of school and brave moments on my part). He seems a little lost without her sometimes during the day and he'll wander around the house. He loves his downtime, don't get me wrong! And he can be a crazy dog when he's "off duty". But he luckily really has a drive to work and is amazing as soon as we give him the "dress" command and put his gear on.

Monday, September 25, 2017

Why?

I had my tonsils out one week ago today. If anyone ever tells you, as an adult, to have a tonsillectomy/adenoidectomy...JUST SAY NO.

Seriously. I'm a week out and it's still pure misery.

And on top of that, both kids now have strep! Thank God I'm already on antibiotics since my surgery. Both kids are now also on antibiotics.


This picture is from Friday. It was a sad, yet extremely snuggly day. Ryan's usually a champ when he's sick, but not so much this time. He's been pretty low key, but has perked up significantly. Lauren is back to her normal (wild) self. Both kids will be going to school tomorrow and I can convalesce in peace.

My mom took Lauren home with her today for like 4 hours, which was amazing. I was feeling so horrible and so was Ryan. Lauren wasn't, which is amazing, but she's hard to keep up with when I'm not post-op! Monte was lost, poor guy. He likes to be touching her, or at the very least, sitting underneath her at the table. He even lays down by the bathroom door while she's going potty, forcing her to touch him to step over him or make him move. If she's not around, I'm his person and I've been lazing around. I feel so bad, I know he's bored out of his mind. He (thankfully) is a dog that loves to work, so a full week with no public access has been terrible for him. Luckily he had a full weekend prior to my surgery, but I still feel bad. I need to drag myself to the grocery store and bring him while the kids are at school sometime this week. If we have spells like this, Greg or I (or both of us) will take him places like the grocery store, the mall, out to dinner, etc to work on/keep up with his training. Restaurants are a great place for training because it's great distraction/leave it training. And he's already so well behaved while "dressed" that he's no bother anyways. Last time we took him out to eat our server was absolutely shocked at the giant dog that left with us. It was a great compliment!

Sunday, September 17, 2017

The magic of kindergarten

Lauren is officially a kindergartener. School started about 2 weeks ago. She is LOVING it! And Greg and I both feel like she's made huge gains since starting. She can count to 10 flawlessly, her ABC's are getting so much better, she can draw a person with a face, she can trace "Lauren" really well independently. And her speech is getting better by the day.

I really love her teacher, I get pictures and updates every day.

Look at this genius!

We'd always just worked on tracing "Lo", it didn't even occur to me that she'd be capable of this yet. And that person?!

Life is going well on the Tenex as well. She's still Lauren (and thus very mischievous), but her meltdowns are far and few between and she's less aggressive with me. We started with 1/4 tablet twice a day and it went well for the first week. Then she was lashing out (hitting, pinching, screaming at me). So we increased her to 1/2 tablet in the morning and 1/4 tablet after school. Her teacher hasn't noticed any tiredness at school and we haven't at home either. Ryan had a soccer game Saturday morning and Greg was sleeping after working all night. So I was on my own with both kids at soccer. Normally, my anxiety would be through the roof for this and I'd need to recruit help. (Partly because of my anxiety and largely due to Lauren's behavior). She was great! She never ran from me, she didn't have any meltdowns even when we had to do a last minute field change before the game started. She didn't argue about sitting in her adaptive stroller. She had to go potty, and she told me she had to go, then actually made it to the port-a-potty (ew). She talked nonstop through the game and wanted me to pay attention to her, but she's also developmentally overall more like a 3 year old so not unexpected. She was seriously angelic compared to how she would've been a month ago. I really do feel like this medication has allowed Lauren's personality to shine through instead of her behavior taking over her.

Ryan is doing great at his new school! We had his open house, got to meet his teacher, and saw his classroom. I had a chance to talk with his teacher about his sensory/feeding issues. I really debated even telling her because he's come so far, but I want to give him the best chance possible to succeed and I wanted his teacher to be on his side. She seems really nice! They have wobble seats in the classroom, which is great because he struggles a lot with staying still. He wears a bracelet he's obsessed with and he constantly opens/closes the clasp, I don't know if it's a fidget-spinner kind of thing for him or if it's anxiety, I could see it either way for him. I think maybe the wobble seat might help him a little if it's sensory. I also really am hoping we can work our way up to buying lunch on pizza day once this year, but so far Ryan is not on board with this. It sounds like he got picked on a little bit about his Titanic obsession because he told us he's trying not to talk about it so much because the other kids at school don't want to hear about it. I'm hoping it was a friend who kindly told him that he'd rather talk about something else. Either way, Ryan wasn't upset at all, so even if it was in a teasing way he didn't get his feelings hurt. I told him that he can always talk to me and his dad about the Titanic as much as he wants (I may regret this). He apparently found a girl on his bus who also loves the Titanic!

The school year is well underway and going well!

Sunday, September 3, 2017

Behavior win! And Ryan is amazing.

Yesterday was one of those great family days that feels like everything goes right. Don't you just love those day?!

We woke up, I took Lauren to McDonalds' drive-thru to get her a sausage burrito and Ryan pancakes. We brought Monte along because he loves car rides.

Then we all got ready (and Greg woke up since he worked the night before) and drove an hour away to a museum with a Titanic exhibit. It was AWESOME! Ryan is really obsessed with into the Titanic currently. Monte hadn't worked in a while, so it was great for him to get the physical AND mental exercise. (Our nanny said she can always tell when Monte hasn't worked in a while because he's crazier than usual) Then we went to a restaurant that magically had an arcade attached (we weren't familiar with the area and had no clue). Then we stopped at my parents house. It was awesome!

The best part? We had this whole long day full of driving, walking (minimal walking on Lauren's part, I'll get to that), sensory overload (namely the arcade), etc. And only one meltdown! Let me say that again. ONLY ONE MELTDOWN!!!! It was at the arcade and it wasn't super involved. And it only lasted maybe 2 minutes. I think she tripped and fell or something, because I found her huddled in the pedal part of a car-racing game crying. I had to drag her out of there, but she calmed down pretty quickly. We just returned to our table, hugged, she petted Monte. That's it, meltdown over. What?!

She was a little whiny at the Titanic exhibit but loved the rest of the museum. The Titanic part was all real artifacts in display cases. You couldn't even touch the cases without alarms sounding. Mix that with a very impulsive five year old. Yep, we made Lauren sit in her wheelchair the majority of the time. She convinced me she wanted to get out a couple of times (clearly I am insane because each time I expected it to go differently). She was really good though! Minimal complaining. There was a huge "iceberg" actually made of us that the kids got to touch. Monte was thrilled to be with Lauren. He's trained to walk ahead of me by a couple feet so he can be directly next to Lauren in her chair. At one point he just leaned over and rested his huge head in her lap. It was really sweet. Ryan absolutely loved the whole thing. And after the Titanic exhibit there was a kids play area with an ambulance the kids could "drive". Then there was an autoworker exhibit.

It was such an awesome day. I'm not sure if it is maybe our behavior medicine kicking in, or the fact that we had Monte with us, or a combination of both. But the stars aligned yesterday and it was amazing. Our whole lives generally revolve around Lauren's behavior, so it was really awesome to have such a great day. The day before my twin sister and I attempted Costco with Lauren...sans Monte because I couldn't find his pack. If you happened to be at our Costco and saw two adult women attempting to wrangle an angry and very flexible five year old into a ridiculously tall shopping cart, it wasn't us. Nope, no sirree. Not us.


As a side note, anyone that knows our Ryan in real life knows he is seriously such a great kid. He's also a little quirky and speaks like an adult. It's been my favorite thing about him since he was two years old and started talking. It used to be scripting from Thomas the Train, and hearing a little kid use correct train terminology was hilarious. Here's a few snippets from our museum visit yesterday:

-Oh, so they excluded the other half (of the 3D model of the ship, so you could see the inside)
-I'm concerned it's not safe. Have you checked the data? (He initially thought we were getting on an actual ship made to be a replica of the Titanic)
-I am not getting in a submarine. I don't have enough bravery.
-I think it took a million blueprints to build the Titanic


Wednesday, August 30, 2017

Summer is coming to an end

School starts back up in 6 days. Hallelujah! My kids thrive on structure and are both getting sick of being home all day. It's a new school for both of them, so Ryan has some first day jitters for sure. I don't think Lauren really gets that it's a new school for her. One of her friends (at least one) from preschool is in her kindergarten class so I'm super happy about that!

We spent last weekend with Greg's parents up north at Torch Lake. We had such a great time! I was so worried about Lauren - how she'd behave, if she'd escape, how she'd sleep, etc. She did mostly great. She slept just fine, though every time I sleep with her now makes me hopeful that her upcoming tonsillectomy will help her. She's not had a sleep study but clearly has sleep apnea. She moves around a ton, snores, and gasps for breath in her sleep. October 5th can't come soon enough, though I am really not looking forward to surgery and recovery for her.

Anyways, we spent the weekend on the boat, having campfires, playing games, and walking around town. It was just what we needed! Lauren did great, she couldn't escape from the camper. She was a little tricky behavior wise just because she has no awareness of danger (ie getting on/off the boat, crossing the street, wandering away, walking to the bathroom). We went out to breakfast one day and she had to go potty. I had to hold her by the shoulders and literally steer her toward the bathroom because she just walks in whatever direction she's pointed regardless of what/who is in her way. Not so safe in a crowded restaurant! I'm pretty sure her foot was hurting too, we did some walking and it was clearly difficult for her. I'm rethinking waiting until spring for her surgery. There really isn't a good time for me to take more time off of work (she'll be 6 weeks non weight bearing). Life is stressful!

Anyways, I took a few pictures of our amazing weekend! It was my first time at Torch Lake and it really is as beautiful as they say.







The kids had a great time up north, walking around the campground, going on the boat, swimming in the lake, and just being kids! Ryan wasn't thrilled with the walking, but did super great and loved going for rides in the quad runner! It was a great trip and we can't wait for next summer so we can go again!

Sunday, August 13, 2017

Church and the special needs community

We began attending a new church about a month ago. I was really looking for a church that I felt embraced us not only as members of the church, but specifically as a special needs family. I can't speak for every special needs family, obviously, but at least in my opinion and experience, special needs families need to be supported in a unique way by the church family.

Our new church does more than support this unique subset of families. They embrace us. They have an active special needs ministry. They have both a buddy program (where a child with special needs attends kids' church with their same aged peers with an adult buddy to partner with them and help them be successful). This is an awesome option! It did not work for our family at our previous church, however. Our new church has a special needs suite. It's essentially a self contained classroom. There is a quiet room, with dim lighting and soft couches. There is an activity room with a sensory swing, a canoe pillow, all kinds of toys. There's another room where there's a TV where kids can watch the bible story video and sing songs. They have a good amount of your typical kid toys- books, trucks, etc. We have chosen to have Lauren in the self contained classroom. She has thrived! She LOVES the sensory swing. She participates with the songs they sing and the activities they do. They have the staffing to work with each child individually. If a child is struggling that day and spends the whole day in the quiet room, or in the canoe pillow, or whatever- that child will see a bible. They offer a (free!) monthly respite night for 3 hours on a Friday that's available for both the child with special needs and siblings. Any special needs family will tell you that respite is vital to the survival of the family unit.

Our old church tried really hard to make inclusion work, and for most kids this worked really well. For Lauren, it often did not. She liked it well enough, don't get me wrong. But she was often very overwhelmed by the large group activity. It was too loud, too big, too crowded, too everything. And those things make Lauren shut down. I feel so at peace now knowing she's in an environment that's made for kids like her.

There's a great slogan in the special needs community, Down syndrome in particular. "More alike than different". In many ways, this is true for Lauren. She has thoughts, feelings, ideas. She feels every emotion possible. She wants to have fun, she loves baby dolls, she loves to go for bike rides. But in a lot of ways, she is not more alike than different. Sometimes she's just different. And that's okay. I'm so thankful we have a church that is able to make this kind of program a possibility for kids like Lauren that just can't be successful in a typical Sunday school classroom.

We'd been going for about 3 weeks when I emailed and asked if we could bring Monte to church. I explained that sometimes I'm the only adult bringing the kids due to Greg's work schedule. And Lauren's elopement is a concern for us. I emailed to ask about Lauren's service dog because I wasn't quite sure who to ask in person. I received an email back almost instantly saying he was welcome to attend with us. So today we tried it for the first time! It made our walk from the parking lot to the door a million times easier. Then again at the check-in kiosk where I type in our name and get the kids' security stickers. Then after service once I collected Lauren from her room, the walk down to the indoor playscape where the kids play after service. And then from there, back to the car. This was infinitely easier knowing I wasn't going to have to chase Lauren down. He sat in service with me, and did fairly well. When the congregation stood, he stood too which totally cracked me up!

Here's Monte with me during worship

Church is a trigger for Lauren's elopement. I'm not totally sure why. Part of it is likely that we like larger churches. Open spaces tend to make her realize that she actually has somewhere to run. And loud/bright/sensory things can overwhelm her and make her run. And when she's successful and I catch her, she's almost always really sorry. She tells me, "I'm sorry mommy. I won't do that again. I promise. I won't run away. I stay with mom." She just can't help it. Sometimes I think she can help it and just doesn't make a good choice. But sometimes she truly just can't control that impulse. And unfortunately, it takes one second for an impulse to become a tragedy. The times she has successfully eloped in public make me lie awake at night and think of all the horrible things that could happen to her. She could get lost and find water and drown. She has no fear of water and lacks the ability to realize basic safety awareness. She could run into a parking lot and get hit by a car. She could run out of sight and get kidnapped, and truthfully, she'd probably go with just about anybody.

A good friend recently bought me a book called Bless My Special Child. It's a religious book, and it has prayers for parents to pray when this life makes us grow weary. There's another section for how the Church can lift up and support these parents on their unique journey. Parenting a child with special needs can be incredibly lonely. It's very easy to feel judged, which leads to parents and families isolating themselves (I know this well and it's something I struggle with daily). Sometimes going to the grocery store can just feel like borrowing trouble and thus, not worth it. Church can feel a million times worse.

The speaker at church today was a woman who works with the organization Young Life and is also a member of the church. She volunteers in the class for adults with developmental disabilities. She started a teen group for teenagers with developmental disabilities. (She also really loves dogs, so obviously we need to be best friends). This is a church that gets it. This is truly invaluable. The Lord made each of us in his image and it's really wonderful to know that our church includes Lauren in that passage. She is beautifully and wonderfully made.

Saturday, July 29, 2017

Rebirth

September 26th, 2011.

This day will always be reflected upon as a day of rebirth for me. A day of growth, of expanded horizons. A day of changed expectations and the beginning of a future unknown. Embarking on a journey is always a gamble, but usually you can see where your feet might land. This day is my line in the sand, forever marking before and after.

I couldn't see the ground in front of me. I couldn't see even one minute in the future. This was a day that began a blind journey into an unknown land. Holland, if you will.

This is the day we found out our unborn baby had Down syndrome. It was so terrifying and a day of total unknowns. It marked the start of a journey that would lead us down a road full of both valleys and indescribable joy.

We could never have know where we'd land six years later. Or rather, that we'd never quite land. This journey is always evolving, always growing, and always teaching.

We could never have known she'd bring us such joy. Or that she'd be so full of love. We could've never guess she'd mend our family where we didn't even know we were broken. On this walk of life our valleys are deep. But our mountains are so, so high. We're often taken onto an unbeaten path where we might not quite know where we're headed, but it's probably going to be breathtaking.

She's changed me as a person. She's molded my outlook on life. Through her I've learned patience. Unconditional love. I have learned perseverance. I've learned that judging another person either for their behavior or their choices leaves no room for compassion or love. I've learned to accept help when it's offered and ask for it when it's needed. I've learned that the world won't end if I admit that I'm drowning (still a work in progress). I've met people both in person and through technology that I'd never have known otherwise. Because of her, I'm fortunate to work in a place that values diversity and celebrates the strength of each person individually.

Make no mistake, it is not easy. It can be hard to admit sometimes that this is hard. In all honesty, this is not a journey I would've chosen for myself. I don't believe that "God doesn't give you anything you can't handle". This life can be very hard sometimes and I don't think there is anything shameful in admitting it. It can be lonely. Exhausting. Frustrating. But the rewards are immeasurable. It is always worth it.

Her times of elopement, her tantrums that are far past chronologically age appropriate, her extremely stubborn nature, her impulsiveness. These would try the patience of a saint! But her unending I love you's, her enthusiastic thumbs up or thumbs down responses, her thirst for knowledge, her no quit attitude. Her squinty-eyed smile. Her hypotonia-induced, body-melting hugs. Her willingness to try. Knowing how hard she works for every small gain and seeing her take such pride in her accomplishments. These make everything so gratifying, so incredibly joyful.

This journey is hard. But so, so worth it.

This is Lauren Hope.


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.