Special Needs Teens

My daughter, Faith, is now 14 years old. I find myself reminding people all the time that she is, in fact, just like other teenagers. And in many ways, she is. However, she has Down Syndrome, and that comes with its own list of challenges, in addition to the typical teenage issues.

Having an 18 year old son, and having been a teacher of middle school children for many years, I feel as though I know a thing or two about teens. They are trying to find their own way, often rebelling against authority figures, such as teachers and their parents. They are hormonal and emotional and wanting to become adults. Their focus is on themselves and their social life, trying to understand who they are as a person. What their friends think is more important than what you, their parent thinks, in most cases. Not to say all teenagers hate their parents, just the opposite. They want and need your love and approval, whether they want to admit it or not. But they certainly don’t express their love for you in the same way as when they were younger. It’s usually not even on purpose. It’s just that teens are often on the defensive or quick to defend their rights and trying to forge their own way. Battling for their own independence. So, as hard as it may be, we cannot take it personally.

In the same way, teens with special needs are also trying to figure out who they are as a person. They too, are hormonal and will rebel against their parents, wanting to do things their own way and in their own time. They too, want and need their independence. And they desperately desire your love and approval.

The difference is, they do have special needs. Depending on their specific diagnosis, those needs vary greatly. In my case, my daughter, Faith, has Down Syndrome. She is very smart and understands most of everything she hears, but is nonverbal. She is unable to say what she thinks or how she feels, with words. She does use some sign language and will point or grunt or make various noises to get her point across. In school, she uses a speech device that she can tap various icons of what she wants to say and the iPad will ‘speak’ for her. Although, that works in school, she doesn’t like to use the device at home. This presents a real struggle. It’s very frustrating for her… and for me.

Over the past 14 years, I have learned her ‘ways’. I know every sound and facial expression and have come to understand what each mean to Faith. Interacting with other people in her life, however, it’s much more difficult for her to make people understand what she thinks and feels. When her hormones were thrown out of wack, it became more challenging. Although knowing what typical teens are like, I realized quickly that she is just like other kids during puberty. The mood swings, stubborn behavior (more than usual), acne, growth spurt, etc.

What I have learned so far is that patience and understanding are key. She is changing and growing in ways she doesn’t fully understand. She needs to adhere to the rules and expectations of proper behavior; respect, kindness and following directions. But now more than ever, she needs unconditional love and acceptance. I cannot imagine her frustration, literally being unable to speak her mind or express what she is feeling. I may be able to surmise since I’ve learned the meaning of her gestures and sounds, but my heart aches to hear her speak to me and have a mommy-daughter conversation.

We make the best of it. We are very close and loving. So times she’s grumpy, I understand and give her her space. Other times, usually soon after, she will still sit on my lap to hear a story and hug and kiss me. We, special needs moms, are honored with having the most important job in the world. We are the person who loves our special babies more than anyone in the world. We are who they lash out at when they are angry. But we are also who they turn to in time of need. We are their biggest cheerleader and strongest advocate. We have endured medical issues, IEP battles, therapies and helping them to learn as they grow. We have overcome more than most. Mark my words Moms, we will get through the teen years.

So, to all the other “Special Needs Moms” out there, you are doing a terrific job! Believe in yourself. And always remember to Have a Little Faith.

My daughter is Non-verbal. And she CAN Read!

She can read!

Having Down Syndrome automatically puts my daughter in a negative light, in some minds. People are unaware of the potential of someone with Down Syndrome. They truly don’t know any better. You don’t know what you don’t know. It’s our job as parents, teachers, family members and friends of a person with Down Syndrome to educate those who are ignorant. That’s why Down Syndrome Awareness is so close to my heart.

What parent doesn’t brag about their children’s accomplishments from time to time?

We should be no different. Brag your child with special needs! Down Syndrome Awareness is an effort to educate people that don’t know someone with special needs, so that our children gain respect and have more opportunities in their future.

My daughter is non-verbal. That does not mean she’s less intelligent that a verbal person with Down Syndrome. But unfortunately, the perception is just that. If you spend any amount of time with my daughter, Faith, it will become very clear to you just how smart she really is. She understands everything you say to her. And you can see those little wheels turning in her head as she is thinking about and decides how to react to what you just told her. It’s quite adorable, actually. Yes, I’m biased, but that’s the mommy-pride. And that’s okay.

She wants to learn. She gets so excited to show me she knows the answer and that she can follow directions. She loves to be a helper!

Once I noticed that she had the receptive knowledge, I knew I could tackle the next milestone. I started with picture cards when she was very young, like most moms do with their toddlers. “Give Mommy the bear”, I’d say. And with 8-10 pictures laid out in no particular order, she would scan her choices and quickly give me the bear. The pride and joy that came with that first moment of realization that she in fact understood, and more than even I gave her credit for, was enormous. I gradually increased the amount of cards on display and she rose to the occasion. After Faith mastered pictures, and colors, I moved on to words. And as a mom who is also a teacher, I starting using grade level sight words. I began with Kindergarten words that also had the pictures with the words. Every time she mastered a set of flashcards I progressed to the next grade level. Quickly she showed an interest in words without pictures. You can see here, Faith was very young, about 7 and was already recognizing words without pictures.

Don’t let them get stagnant. Keep progressing to another level once you’ve seen mastery.

She chooses to practice her reading. It’s one of her favorite games we play. She gets excited and takes pride in showing off her skills. As I sit and write this now, Faith is 14 years old and in 8th grade. She has mastered third grade sight words on flashcards and we are working on 4th grade. She also loves Boggle, which we’ve adapted to her needs and current level. She matches the correct letter of the cubes to the word on the card and spells each one as we sing and cheer or act them out. Such fun!

***Side Note*** This is one of her ways to communicate. Just think about how frustrating it is for your non-verbal child, when they cannot express what they want or need. Words on index cards can help them communicate, besides practicing their reading. In addition to signing, Faith gives me a card that says chicken, when she wants her chicken strips.***

I’ve learned that the more she gets challenged, the happier she is and the more she accomplishes. However… Let us not forget timing. Timing is everything. If your child is anything like mine, they have a stubborn streak. Let them go at their own pace. Like any child, if they feel forced, they will object. Remember, you KNOW YOUR child. Trust your own instincts as a parent.

And remember, it is ‘our job’ to educate people who don’t have the pleasure of knowing someone with Down Syndrome. Especially when your child is non-verbal, don’t accept the mis-guided thinking of those who underestimate their abilities. Our children want to learn and are capable of more than we all realize.

In my children’s book, Have a Little Faith, I show how capable children with Down Syndrome are, promote acceptance of children with Down Syndrome and encourage all children to never give up when things are difficult.

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

Having a child with special needs, changes everything!

My girl!

As parents we are relieved when our children graduate out of a developmental stage.When your baby rolls over on her own, babbles her 1st sounds, begins somewhat solid foods, crawls and takes her first steps it’s a reason to celebrate! You are elated, filled with joy and overwhelmed with pride.

We all want our children to be healthy. But, how do we cope when they’re not?

We all want our babies to learn, grow, and succeed. But, what happens when they don’t?

When you’re child has special needs, all of those milestones happen at a much slower pace. When Faith was born, I happened to have friends and family members with children of a similar age. As the other moms watched their children sit up on their own, I was changing Faith’s feeding tube and giving her heart medication. When the other moms were encouraging their babies to practice tummy time or crawl towards them, I was bringing my daughter to have open heart surgery. I was constantly watching other children thrive, achieve, and progress week by week, month by month. And because they were family and friends, and I love them, I was happy… for them. However, I felt sad for me and my girl. It was near impossible to prevent my heart from sinking. I remember crying a lot during those years when my daughter, Faith, was very young. It’s a hard pill to swallow. My heart was filled with so much love for her, and yet, I felt it breaking as I watched her fight and struggle to thrive.

As time passed, Faith proved everyone wrong. The doctors said she would never eat on her own, Faith took out her own feeding tube one day and just started drinking from her bottle. The doctor said she may never crawl or walk until one day I found myself chasing her as she ran down the sidewalk.

Yes, having a child with special needs changes everything! It has changed my views on life.

I realized… I have been blessed with a child who has special needs.

I watched her closely as she continued to grow and learn, and tried my best to help her reach her milestones. What I discovered was that I was actually learning from her. She taught me to never give up, every time she struggled yet persevered until she mastered the task. She taught me patience since it took her longer than most children to acquire a new skill. She taught me how to adapt because things often don’t go as planned. She taught me to trust in the fact that she would succeed. I ultimately learned that with her drive and my constant support, how could she fail?

My daughter has Down Syndrome.

She’s smart, funny, sweet, thoughtful and loving. We are now at the point where the young child struggles have been replaced with teen issues. I am up for the challenge. And I know that we, together, will adapt, discover more, acquire new skills, achieve our goals and continue learn from each other.

So to all of the other moms with very special children, trust in the power of your love and dedication and believe in your child. Remember, you are doing the best that you can. Keep the faith!

Life Skills Are Fun!

Learning by doing!

My baby girl loves to be Mommy’s helper!

We all want to feel needed. We all want to feel like what we do day to day is important. Many of us love to help others. And children with Down Syndrome are no different in that respect. Faith is a people pleaser, like her mama. She’s taught me that household chores can be fun. When I see how she delights in helping and receiving praise for a job well done, we actually enjoy doing our chores together.

You can see here, Faith’s favorite chores. She loves doing laundry. There’s a specific procedure to follow and she is ALL ABOUT ROUTINE! She learns by watching and doing. I always talk to her and explain, over and over what the steps are for the task. “We get the dirty clothes from the hamper. Next we put them in the washer. Then we add the detergent. Finally, we close the lid and push start.” I say it every time and allow her to do it as much by herself as possible. It also builds her vocabulary in the process, which is a bonus! Of course, I provide lots of exaggerated praise and compliments, which in turn encourages her to keep doing more for herself.

Faith also loves washing dishes. Actually washing, although often playing with the soapy water interests her more than the dishwasher. But hey, whatever works, right moms!?

Juicing is her most recent ‘chore’. As I chop fruits and veggies, Faith puts them in the juicer. Then she gets to push them down with the attachment as I turn it on. We laugh and cheer at the loud noise. Best of all, it’s jam packed with various nutritients, and she drinks it because she took ownership and felt proud helping. It’s WAY better than store bought… Mom Win!

Life skills are so important for children with Down Syndrome. These are skills that teach her how to be self-sufficient and are tasks she will use the rest of her life. My primary goal, other than keeping her healthy and happy, is to teach her how to be self-sufficient. Isn’t that what all parents want for their children? We want our children to learn how to do things for themselves, to learn, to grow and to experience success. Faith is so proud of herself when she’s doing the big-girl chores. You can tell by the huge, beautiful smile on her face!

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

Always a ‘Helper’

The older Faith gets, the more she wants to ‘help’. One of my primary goals in raising Faith is to make her more and more self-sufficient. She is learning something new all the time. And it’s clear that she, like the rest of us, want to feel accomplished.

The problem is when she is mommy’s assistant, it usually means more work for mommy. And that’s ok (kinda). How else is she to learn, if not through messes and mistakes? Isn’t that how we all learn?

Pictured here, she is watering the little garden we recently planted. I used it as a home-schooling Science lesson that day. (Most of us are homeschooling these days, so try this with your kiddos.) We talked about plants needing sunlight and water to grow. She listened intently and was totally into it. She helped put the potting soil in our planter, insert the mini plants and seeds. She really showed an interest and as we go about our day to day I’ve learned that she thoroughly enjoys ‘doing’. She likes anything hands on.

The potting soil was ALL over. I think more was on the porch and the ground than actually in the planter. Some plants got a gallon of water while others just a few drops… lol. It’s hard for her little hands to control pouring (maybe because of low muscle tone or just a learning curve). I just said, “Oopps. That’s ok.”. Faith gets very upset when there is a spill. To this day, I don’t know why and wonder if anyone ever ‘yelled’ at her for making a mess. I subscribe to the theory of “Don’t cry over spilled milk.”

There are countless stories of similar chores. I’ll only share a couple more to give you the big picture.

Faith LOVES housework. Woo-hoo! Thank You, God! 😉 Her teachers have always said she thoroughly enjoys her Life Skills class. I’m so grateful for classes like that in school. As a teacher and a mom, I believe all kids, whether with special needs or typical children should have a Life Skills, Home Ec. type of class. All children need to develop skills to function and take care of themselves every day, now and in their future as adults.

So every time I clean, Faith ‘helps’. If I get the vacuum, she shuts her kindle fire and comes over to push and pull. If I’m dusting she wants her own rag to wipe surfaces clean. Emptying and loading the dishes? She is there! I’m glad there are such activities to get her to ‘unplug’ so to speak and give her device a break. I admire her enthusiasm. It reminds me of when I was young, helping my mother dust or set the table. She always played music, usually Billy Joel, Donna Summer or Hall and Oats (yes, I know, I just dated myself… lol). We always sang and danced around like fools, but we got the chores done and it always had fun. So as a mommy myself, I often blast music and Faith and I sing and dance around while cleaning. No, she doesn’t vacuum correctly, but I teach and explain without saying it’s ‘wrong’. Yes, I worry that she’ll break things when she dusts, but they are however just things. I remind her she must be careful and praise her for trying. And she may not reach the cabinets to put the dishes away but I have her pass them to me, which saves my back, so it works!

Yes, chores take twice as long this way. Yes, it’s more work for me. No, it’s not easy. But let’s face it, not much in life is… especially for Faith. My goal is to help her learn from her mistakes, to never be afraid of trying something new, and to stick with a task, even when it’s difficult, no matter how many mess ups you make. Isn’t that our intention raising our special babies? I believe so.

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

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.