Welcome to my blog!

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

Monday, November 14, 2016

Handicapped Parking

We got a handicapped parking tag this summer in anticipation for winter time. Lauren's a runner and I didn't want to chance her running off in icy conditions and cars not being able to stop, if they even saw her. Plus she tends to do the typical Down syndrome drop and flop at the most inopportune times. And carrying a squirmy, low-tone kiddo who's wearing a slippery winter coat while I am also wearing a slippery winter coat is a recipe for disaster.


I've been using it for restaurants and the grocery store lately. Lauren weighs 38lbs and has moderately low tone and places where I can't bring her stroller, like the ones I mentioned above, I end up carrying her because either she doesn't want to walk at all, runs off, or drops/flops and refuses to move.


Holy cow! It has made my life SO. MUCH. EASIER. It's generally a much shorter distance, so she's usually willing to walk it. And if she doesn't want to or refuses, I can actually carry her because I'm not schlepping from the back of the lot.


It's honestly been lifechanging because I really don't go anywhere without her except for work. She comes with me to the grocery store, to Target, to church, to restaurants, to the mall, etc. She loves to go places and I love taking her, and I found our parking lot struggles were making me feel too overwhelmed to leave the house with her.


I was so against it because I didn't want to be seen as someone abusing it, and if I'm honest I didn't want her to be handicapped. But I am so super glad we decided to do it. I am so thankful that it's available to us and it keeps Lauren safe and keeps me sane.

Monday, October 31, 2016

Struggle Bus

Time for a post to round out Down syndrome awareness month. Not that I've done any other posts this month. This is not unicorns and rainbows.


Lauren is riding the struggle bus lately with behavior. Part of it is because I baby her and she acts a totally different way with me than she does for other people. And I've spoiled her rotten and she wants to be held 24/7. My back hurts a lot due to the lifting. She's learned to jump as I'm picking her up so that's really helpful! It's also super cute so that's an added benefit.


She had a meltdown at Toys R Us this weekend of epic proportions because I dared to make her stop sitting on a ride on toy. I ended up practically dragging her to the car to get her adaptive stroller to contain her. My Ryan was so super helpful during this time, asking if he could unlock the car for me, carried the keys, etc. Yesterday at a birthday party she got upset and hit me because I was trying to move her from one place to another. This is tough for me because Ryan never did this. He was always a fairly easy kid to reason with. I've tried, it does not work with Lauren. When she is fighting me and trying to run away from me, I can't physically manage her anymore when she's literally kicking and screaming. As soon as I put her down, she's fine. But she's also running away from me. Thank God my dad was with us at the birthday party! And my sister helped me keep an eye on both kids, on top of watching her own two kids.


At one point he did sigh and quietly say, "Mom, it's really hard sometimes having a sister with Down syndrome.". It made me so sad! I just gave him a hug and said, "I know buddy. You are the best brother for her!" I was so glad he was able to verbalize his feelings. I'm sure it IS hard for him sometimes. And he almost never complains.


I'm not sure if it's just that she's a fournado or a developmental phase. But lately, This. Is. Hard. I feel like I'm failing her more often than not. I feel like motherhood is not something I'm good at anymore because I don't know how to parent her in public when she's misbehaving. At home I can put her in a time out, take things away, speak more firmly. In public she doesn't have a bedroom for time outs. I feel like I can't yell at her or people will think I'm abusing my disabled child.


I feel like I'm failing Ryan because he almost never comes first and that's not fair. I did sign him up for soccer on Saturday mornings and he loved it. Just he and I went and we got a Slurpee afterward.


My mom and I talked about this recently after another behavior struggle at a family party. I said it makes me upset when she misbehaves like that in public because I don't want anyone to think my life is hard. She said, "But sometimes it is. It's okay for people to see real life.". The hard part is that I don't want anyone feeling sorry for me or for us. I would choose her again and again and again.


Sigh. I'm thankful for my stash of Halloween candy and good wine.

Monday, August 29, 2016

Elopement-Awareness and Grace

It happened again.

Lauren eloped at a mall over the weekend. She was gone for an hour. The police found her. She didn't even know she was lost and was very excited to tell me that she got to see a police man. The rest of us were VERY shaken up, this will take us a long while to recover from.

We ordered her an Angel Sense GPS tracking system that should hopefully arrive very soon. I will be sure to post a review once we've had it and used it awhile. (Not sponsored of course, nobody cares that much about my opinion!)

This is something that has a lot of public awareness for kids with autism. Not so much for kids with other disabilities!

We need to all live in grace with this issue. A child can slip away in an instant. Especially a child with about zero impulse control and no sense of danger. When that little boy fell into the Gorilla pit at the zoo my mind immediately went to my Lauren.

We already have an Alert Me band with our phone numbers on it. It also says, "I have special needs" and "Please call if I am lost". Hopefully this GPS tracking device never needs to be used to locate her, but chances are it will.

This part of special needs parenting is hard. I am so thankful for our village.

Friday, July 8, 2016

She's learning so much

Lauren has been learning like crazy lately!

I got home from work today and I asked Lauren what she did. I do this every day and sometimes I get an answer. Most often she tells me "uh-uh" or "go away" or my personal favorite, "pee-pee", which are her go-to responses when she's not sure what to say.

Today, however, I got a real response! She told me "Renee house", "Renee dog" and "I pee my pants". I asked her where she peed her pants and she told me "Renee house". She did indeed go to Renee's house and saw Renee's dog! I don't actually think she peed her pants, Ryan said she didn't! She is apparently picking up potty humor and thinks it's completely hilarious to answer questions with inappropriate answers. This week at Kroger a lady asked her what color her shoes were and Lauren responded, "Pee!" Luckily the kind woman thought Lauren was trying to say pink!

On Wednesday for the very first time she asked another child their name without any prompting! She went up and said, "Hi baby! What name?" While signing "name". I was so super excited! Unfortunately the child she chose to talk to was really young and not able to answer, but still! That is a big development!

We have been going on bike rides lately because we bought Lauren a bike seat for my bike. She LOVES it and asks to go all the time. Her favorite thing to do is look for dogs. Today she wanted to look for dogs, cats, and babies. We saw a baby and 2 dogs so I'd call it a win.

I just feel like she's a little sponge lately, she is soaking up everything around her and talking so well. And so much. She says all of our names so clearly. She calls me mom, mama and mommy. She pronounces mommy like mah-nee, with an n. It is SO adorable. She can say daddy now, where she used to say da-ee. She says potty now instead of pa-ee. She will at least try to repeat almost anything. We have this one particular book of animals and she can say so many of them now! Kangaroo, turtle, dolphin, monkey, butterfly, camel, tiger, lion, hippo....and she says them spontaneously when she sees their pictures. She knows the animal sounds for a ton of animals and has a specific roar for the tiger, lion, and bear. She will tell me "bird fly in sky!" while flapping her arms and pointing the sky. On our bike ride today we saw an airplane and she said, "Mama! Airplane in sky! By airplane!"

We got a new playscape for our backyard! We got it used and it is amazing! The kids really love it. We had a party on July 4th and while we had everyone over, we made them work for their dinner! We'd had it in our side yard for a week but it was huge and heavy and we needed as many hands as possible to get it over our fence.



And this guy. He has been so sweet to his sister lately! He's been inviting her to play with him and sharing his toys so well.



Saturday, July 2, 2016

4 years of Lauren

I have fallen off the blogging truck. Its been months since I've written anything which us due to a combination of writers block and smooth sailing.

Lauren is 4 years and 4 months old. I could never picture her being this age! She is so much fun. And so incredibly SASSY. She is 4 going on 14! Let me just enlighten you on some of the funny things she is doing.

-If she doesn't want to do something she's asked to do she says "No ma'am!"
-She has a bike seat attached to my bike and she loves bike rides. She will just go get her helmet and put it on of she wants to go for a bike ride, then come find me and say "Mom! Want bike ride!"
-She loves to brush her teeth
-She loves to throw everything in the toilet. Recently this resulted in major plumming issues that resulted in 2/3 of our toilets having to be completely disconnected and removed.
-We are on our 4th pair of glasses since August. I'm sure you can guess why.
-She loves to sing. And pray. And talk nonstop every single waking moment of ever single day. Its so awesome and we know how blessed we are that she's so verbal!
-She is potty trained!!! This was a rough go at first. She was afraid of pooping in the toilet which resulted in even worse constipation than usual (sorry for the TMI but I know my Ds families feel out pain). Now that she's not scared and taking fiber gummies daily, she is having daily bow movements in the potty! PTL!

Really, life has been mostly good here. Lauren has been running/eloping which is absoluty terrifying. She can slip away in a second and while she seems momentarily afraid when we catch/find her, she truly does not seem to understand danger. She now has a bracelet she wears 24/7 that says "I have special needs" and "Please call if I am lost" along with our phone numbers. We're looking into GPS tracker bracelet systems. We've talked about a service dog but the cost is prohibitive. We double and triple lock our doors. Our outside gate gets locked. Ryan is always on the lookout. I feel bad because I know this causes Ryan a lot if anxiety too and he's only 6 years old. We were watching her at gymnastics this week and he briefly couldn't see her. He lanicmed and said "Oh no, I bet she ran. We need to find her." I explained that the gym was owed in and that she could not get out. This worry has become a way of life for us that is very stressful! She's gotten lost at a museum (briefly, with 2 adults watching her), escaped from our house (I found her 2 blocks over), runs from us at church, almost jumped in a swimming pool, etc. Its so scary. And Ryan kind of gets neglected while we're out because I know he won't go anywhere. We've started bringing her adaptive stroller pretty much everywhere to contain her. She would way rather walk, so this is not a fun option but it is a safe option. We bought a little backpack leash that we haven't used yet.

Mostly, 4 years into this journey I am still surprised at how fun it is. She has such a joyful spirit (which makes discipline so so hard for us!). I'd swear she is made if pure sunshine.

Last night I got home at 9:15 and she was still awake. She was so hyper and had the giggles. She is usually very lively but this was comparable only to a leprechaun on cocaine. My arms were weak with laughter while trying to escort her upstairs for bed for the millionth time. Then we were rocking in her rocking chair and she kept kissing me and then cracking up again! I was trying (and failing) to keep a straight face. All I could think of is that I know I never deserved any of this. And I am so so blessed.

Sunday, February 14, 2016

It is well

Today at church we sang a song that I consider to be "my Lauren song".

1. When peace, like a river, attendeth my way, 
when sorrows like sea billows roll


whatever my lot, thou hast taught me to say, 
It is well, it is well with my soul. 
Refrain: 
It is well with my soul, 
it is well, it is well with my soul. 

2. Though Satan should buffet, though trials should come

let this blest assurance control, 
that Christ has regarded my helpless estate, 
and hath shed his own blood for my soul. 
(Refrain) 

3. My sin, oh, the bliss of this glorious thought! 
My sin, not in part but the whole, 
is nailed to the cross, and I bear it no more, 

praise the Lord, praise the Lord, O my soul! 
(Refrain) 

4. And, Lord, haste the day when my faith shall be sight, 
the clouds be rolled back as a scroll; 
the trump shall resound, and the Lord shall descend, 
even so, it is well with my soul.

My sorrow when Lauren was ill cannot be put into words. At the time, I felt truly forsaken. I felt abandoned by God when we found out she had Down syndrome. I felt utterly destroyed when we found out that she would be born with a broken heart. I was emotionally eviscerated when she was ill.

Lauren just turned four years old. Four years with our blessing in disguise. Lauren was our unanswered prayer. I prayed that God would not make us walk this road. I prayed that God would not make me parent a child like her. And instead, He gave me her.

People say that God will never give you more than you can handle. But it just isn't true. Lauren's illness broke me. I will never be the same person I was before she came into our lives. Lauren's illness was so much more than I could handle on my own. By the grace of God, I wasn't on my own. I had my husband, my sisters, my parents, my in-laws. Countless friends and acquaintances. Complete strangers that prayed for us daily. Most importantly, I had Him- the Great Physician, who healed both Lauren's heart and mine. He showed me a better way that is so much richer, so much happier and so much more real than I ever had before.

It is well with my soul.

Wednesday, February 3, 2016

Ryan has been sick for a week. He keeps regularly going 24+ hours between throwing up, which is super weird to me. I kept him home from school again today because he threw up while still asleep last night. The kicker? I was sleeping in bed with him. Yeah. Ick. Good thing I love him so much. We could definitely use some prayers for him to feel better!

Getting them both dressed to take Lauren to school this morning was actually less challenging than I expected, though we did miss the chance for Lauren to walk to class with her friends. She did NOT like this and went and sat on her (empty) bus bench to wait for her friends. She was very happy to show me the way to her classroom though!

My mom offered to keep Ryan so I could nap since I was up all night with him. It was great, I dropped him off at her house, came home and got Lauren off the bus and then I napped while she napped. It was pure bliss. I haven't slept well at all since he first got sick last week! A midday nap was just what the doctor ordered.

While I was rocking Lauren to sleep before her nap she said, "Mom, want sing!" So I sang Rockabye Baby. In our house, this progresses to Rockabye Mommy, Daddy, Lauren and Martha (the cat). Today it ended in, by request from one almost-four-year-old, in Rockabye Hummus! I laughed through the whole song and then she was laughing too. She really, really loves hummus.

When she got home from school I emptied out her backpack and she had some artwork. One was a tooth-shaped paper because they've been learning about the dentist. The other was a paper cutout of a person that she drew eyes and a mouth on!!! It also had a band-aid on it and when I asked her what happened she said, "Band-aid!" She is one smart cookie.

Then I rocked her to sleep tonight and she kept snuggling her little face into my neck. Every once in a while she would give me the tiniest kisses on my neck. She is the sweetest girl ever.

My mom took her out to dinner and to gymnastics tonight so I could grocery shop alone. Ryan got to stay home for some father-son bonding time over video games.

My mom said Lauren did awesome at gymnastics! She usually does pretty well. She has an awesome teacher who is amazing with Lauren. Really, she goes above and beyond what I could expect out of a non-adaptive gymnastics class. Today they worked on the balance beam, which Lauren cannot/will not do. Her PT at school tries it but she doesn't feel steady enough. So today in gymnastics they were walking on the low balance beam and were supposed to jump over a little stuffed animal. Lauren can't do that either. So instead, she walked with one foot on the balance beam and one on the floor (super low balance beam!). When she got to the part where they were supposed to jump over the stuffed animal, Lauren picked it up and kissed it!