Life is Messy

Mornings like this prove that my daughter has taught me patience.

I stumbled out of my bedroom 5:30 am, on a Saturday, to Faith’s, not so quiet, chatter. There’s no sleeping in on weekends over here (insert eye roll). She had another ‘accident’ and did not make it to the little girl’s room in time. As I walked in to the living room, she waved at me… lol. I asked her if she had an ‘accident’ and she signed ‘I’m sorry’. It’s hard to be mad or annoyed when she knows she should have made it in time and is apologizing. So as I cleaned her up, I reminded her, as always, that she is 13 years old and said, “You’re a big girl. And big girls use the potty.”. She points to the potty and signed ‘sorry’ again. She knows. She tries. She feels bad. So how can I be mad? Did I mention it was 5:30 am on a Saturday?

Well, now I’m wide awake so I made a fresh pot of coffee and tried to salvage my morning. Until the next mess…

As I was just about to sit and relax with my first cup of coffee, Faith spilled her cereal, which is now all over the furniture and the carpet. I remained calm. Faith signed, “I’m sorry”. I asked her to get a paper towel and had her help me clean the mess. She eagerly helped clean up. I thanked her for helping and she smiled proudly and signed ‘good job’.

Without patience, this morning could have gone terribly wrong. I could have yelled or acted angry. Faith would have felt even worse for causing her messes. Then I would have felt guilty and like a terrible mommy for making her feel worse than she already did. Upset her more? For what? What would that have accomplished? She’d feel bad, and I’d feel worse. She’s not malicious. She does not cause a ‘problem’ on purpose or out of malice. Accidents happen. Life is messy with any child. In Faith’s case, she is learning to do things for herself. She tries and wants to be a big girl. She wants to experience success. She needs to feel proud of herself. So I retaught and explained calmly instead of scolding her. I provided her with the opportunity to clean up so she could feel like she did something ‘right’ after a mistake.

So within an hour of waking up at 5:30am (did I mention it’sSaturday?), I was so busy helping Faith and cleaning up that my coffee was then cold. I didn’t get to sit still for even 5 min. I survived. And we did it without tears. I’m glad I chose not to make an unpleasant situation worse. As I sit here writing, she is smiling and waving at me. So now we can start our day :).

It is NOT easy! It’s frustrating to be teaching the same skill after more than a decade with little headway. But she’s trying and I will not give up on her, nor will I allow her to give up on herself. I do NOT always practice patience in times of chaos. I get it. I’m with ya. We, as parents, are not perfect. But I am happy with the way I handled this morning. Breathe. Count to ten. Stay calm. Remember, children will react to our actions. Practice patience as best you can. Really, what choice do we have? Our ‘special’ babies do their best. Our job is to support, teach, encourage and to love them the best we can.

So to all the other ‘Special Needs Moms’ out there, you are doing a magnificent job! Keep the ‘Faith’ 🙂

Happy Mother’s Day :)

My ‘babies’, Matthew and Faith!

Being a mother is by far the most difficult and rewarding job I’ve ever had. Although my son made me a mommy over 17 years ago, having my daughter made our family complete. I’ve always wanted one of each and loved having a big brother to protect my baby girl. And that he has! He is often much more protective of Faith than I am, jumping to her requests and catering to her every need. As sweet as it is, and I love him for it, my priority as her mother, especially lately has been to teach her to be self-sufficient.

Being the mother of a child with special needs has many challenges. Many days I’ve cried, felt sorry for myself, asked why, and felt like giving up. Other days I feel confident and determined to find fresh ways of teaching her, playing with her and loving her the best I can. Talk about an emotional roller coaster. Many days, I doubt myself as a mother. I pray I serve her well and that I do not fail her. All things considered, I wouldn’t trade her for the world. I’m blessed and grateful to have my beautiful, loving baby girl in my life.

Faith will always be my baby girl, but she is a teenager now and her special needs have changed. She has excellent receptive knowledge, understanding everything we say. She’s excellent with puzzles and although, not verbally, she reads at a second or third grade level. Although, we struggle day to day with potty training and developing her speech. She is making a lot of progress but it is very slow going. Believe me… she has absolutely taught me patience. I don’t have a choice. She has to do things in her own time. If she is pushed beyond her limits, the yelling ensues and it’s just not worth upsetting us both. Patience is key. I’m not sure who gets more frustrated, me or her?! I’ve learned to choose my battles.

Our at-home speech training has produced little results. She tries so hard to move her little lips and make sounds as I instruct and over-emphasize every syllable. It breaks my heart. She WANTS to talk. And bless her heart she tries. I do not feel pity. I do not feel sorry for her. And I will not allow her to feel sorry for herself. So I praise her for every tiny accomplishment because to her, and to me, it’s not tiny at all. When she accomplishes a goal, it’s a VERY big deal! The first time she got dressed by herself… woo hoo PARTY TIME!!! Helping with household chores… “YAY FAITH! You did it!!!” I overly praise her and thank her for the slightest things. You know why? Because it helps her to feel like she can do things. It makes her feel good that she did ‘something’ right. And when she struggles every day to complete the smallest task, she deserves to feel good about what she CAN do. Building her confidence is crucial. I want her to feel great about herself! She should. She has come a very long way since the NICU, feeding tubes, and open-heart surgery. So if all she did was put her dish in the sink after dinner, without being told, to us she achieved greatness. If she’s happy, I feel like I got something right. I am her biggest cheerleader and her greatest fan (next to her brother, Matthew). I will always advocate for her and teach her confidence so that one day she can be her own self-advocate.

We, as moms, stress about everything. We feel exhausted. We worry if we are doing all we can. Ah but remember… the rewards are glorious. The smiles, hugs, kisses, and laughter are all so worth the struggles and remind us we are doing something right. So to all the other ‘Special Needs Moms’ out there, you are doing a magnificent job! Keep the ‘Faith’ 🙂

Random Acts of Faith

That’s my girl!

We just moved a few weeks ago to a new home, in a new town. Her surroundings are very different. I was so worried about the transition living in an unfamiliar house, but she never skipped a beat. Talk about impressed. Children are resilient. However, it’s very different from what Faith had been used to. She no longer has a fenced-in yard with her own playground, but we now have a beautiful wooded lake and playground in walking distance. So we must make a few adjustments.

I’ve been re-training her regarding the ‘dos and don’ts’ of our new surroundings. I explain the usual warnings like all conscientious parents… don’t go outside alone, stay on the sidewalk, look both ways, etc. I also repeat the warnings in several ways as often as possible, because since Faith is non verbal, I’m never sure of how much she truly understands. We now live very close to the road in an old-fashioned, quaint neighborhood. It’s a one-way street, so you would think there’s not much traffic. There really is not… except the occasional car that runs a stop sign or goes 50 mph in a 20. I’ve turned into a version of the stereotypical grumpy old lady that rocks on her porch, shaking her fist, yelling, “Slow down!” And yes, I’m that mom who has already called the city asking that they install speed bumps. And why not? After all, I have a non-verbal, special needs child who is although smart, often unpredictable.

Then, it happened. The one thing I’d been worried about for weeks. Early in the morning my son, Matthew, Faith’s protective big brother, tore through the house, like a bat out of hell, running down the stairs, out the door, and down the porch, jumping off the end into the road to save his little sister. Faith had unlocked the door and was running down the middle of the street! I was asleep and by the grace of God, Matthew was up early and just happened to look out his window, which happened to be the direction Faith ran. Thankfully, she is fine. She was laughing when Matthew caught up to her and brought her safely home. He woke me and explained what happened. All I could do was hug her tightly and thank God she was unharmed. Matthew and I explained to her it’s dangerous to go into the road. We reminded her, as we had countless times before, never to go outside alone. As she sat on my lap, listening intently, her head down and her little bottom lip out, it was clear she knew it upset us. We asked if she understands and she signed ‘yes’ and gave us a thumbs up. Does she really get it? Will she remember next time to ask or get someone to bring her outside? Does she comprehend danger? I ask myself these questions every day. And because she’s non verbal, I just don’t know for sure.

Every day in my ‘Life with Faith’ is unpredictable. Some days she is very needy. Other days she’s independent and self-sufficient. Some days I think she has regressed, being homeschooled. Other days, she seems so smart and grown up. I worry all the time. I doubt myself. I wonder if I’m doing enough, explaining things properly and providing what she needs to learn and understand. Then I realize, everything I do in my life is to help both my children succeed and be happy. I learn from my mistakes and improve my strategies to do the best I can. So to all the other ‘Special Needs Moms’ out there, you are doing a magnificent job! Keep the ‘Faith’ 🙂

“The ups and downs of Down Syndrome”

Life with a child that has special needs is unpredictable. They’re all different and they all have their own triggers that set them off and sometimes those triggers can strike when you least expect them. Faith is a fun, funny, happy, and smart little girl. However, there are times, usually at the worst time for me, she gets frustrated or startled. Faith is still non verbal (we work on it and I’m not giving up on her speech). She uses sign language and gestures to communicate. So when she gets upset, she often yells because she doesn’t have the words to ‘say’ how she’s feeling. It’s heartbreaking and frustrating for her and for me. It’s hard enough at home when it throws off the rest of the family, but in public it’s another thing entirely. Strangers that do not know you and who aren’t capable of understanding (through no fault of their own) may stare or roll their eyes in disgust. Others give a sympathetic smile. But for the mom who is trying her best and nothing helps, it’s a heart-wrenching ordeal.

My daughter has Down Syndrome but many of her behaviors are like those with other special needs. I’m part of an awesome group of moms (shout out to my Yellow Roses… lots of love) that also have children with special needs. Some of our children have Down Syndrome, Prader-Willi Syndrome, Autism, and other special needs. I strongly encourage you to find a support group that’s right for you. My girls are local and we try to schedule Mommy Nights as often as our schedules allow. Their support is invaluable to me. I often feel like no one ‘gets it’. So after a night with my group, I feel better that they really do understand. We share tricks, possible solutions, compassion, love and support. If you cannot find a local group, please follow this blog and feel free to comment and ask questions.