Welcome to my blog!

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

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.