My daughter knows I am not able to pick her up from a standing position or hold and carry her while standing. She does know though that I can pick her up and hold her while sitting. The other day she was sitting on a bar stool and wanted me to help her down even though she's perfectly capable of climbing down on her own. When I walked over to her she pointed to a dining chair, wanting me to sit down to help her. Or sometimes she will lead me by the hand over to the couch or a chair so I can pick her up. I am often touched by how understanding and considerate she is. But most of the time, when she asks to be picked up, I will simply just get down on the floor wherever we are and let her crawl onto my lap. Sometimes, in the middle of preparing dinner, I will stop and sit down or kneel on the kitchen floor to hold her.
When I was in college, several years ago now, I used to walk all over campus no problem. Even just a couple of years ago I could go shopping on my own, walking across streets and parking lots were not a problem. But just within the past couple of years I have developed a “fear of concrete” and I’m pretty sure it’s getting worse. I contribute my inability to walk on concrete to a lack of practice and exercise, but it is also mental. Now I can't even walk from my car to my office on my own unless there is NO ONE around that might be looking at me and even then sometimes I freeze. I get nervous and freeze when I think someone is watching me, I freeze when I fear I might fall. I freeze when there are cars around because I fear I might fall in front of a car. My muscles tense, my legs stiffen up, causing my balance to become worse, and I literally can not move. I haven't fallen down yet but if I freeze suddenly half-way between my car and the office it takes me a really long, awkward time to get to the side of the building to touch for balance,. And once I make it the 20 feet to my office and relax, my legs, because of stiffening up, feel like Jello, like I’ve walked a flight of stairs a hundred times. It's maddening. But I refuse to start using a walker because I’m afraid that I'll become dependent on it and then never be able to walk alone anywhere.
A few weeks ago I went to my doctor for back pain. I have never really dealt with much pain, if any, as a result of my cerebral palsy. I think the back pain was a result of sitting wrong at my computer at work or lifting my 30 lbs two-year-old. My doctor asked me if I would be interested in physical therapy. I said yes, and that is when I told her about my difficultly walking.
I went to my first physical therapy appointment 4 weeks ago.. Boy did it bring back memories from childhood.
The physical therapy department is in a different building than my doctor’s office. One I had never been to before. The disabled parking is across from the entrance rather than the side of the building. I was doing okay walking until a vehicle came and stopped for me to cross. I got nervous, stiffened up, and looked like an 90 yr old trying to cross the street. I made it to the sidewalk and there were 2 guys on the sidewalk coming toward me. I asked if one of them could please assist me to the main sidewalk (I still had to cross where the sidewalk split for a small driveway). He helped me and then asked if I wanted help to the entrance. I said I would be fine and thanked him so much. Well, I wasn't fine because I already felt like I had caused a scene and now everyone was watching me. A woman walking into the building asked if I needed help and I said that I guess I did. Someone near the entrance had seen me and came over with a WHEEL CHAIR!!! LOL! OMG! Now I was totally embarrassed and I told him that and that I really didn't need it. But he was kind and insisted so I sat down in it and he pushed me to check-in. I assured him I would be fine once in the building. He said it would be no big deal if I wanted to be wheeled to my appointment, that he was just waiting for his wife, and wanted to make sure I would be okay. I stood up to check-in and thanked him over and over and said that no I wouldn't need assistance. I was fine after checking in and walked up to my appointment without any difficulty.
I told my physical therapist this and she said that yes, she could help me with my balance, but that she is not psychologist but it sounds like I have developed an anxiety about concrete. I agree with her because I know that part of it is mental. Part of it is a lack of confidence. Four years ago I suddenly was afraid to drive this one stretch of highway. Nothing had changed. It was all in my mind. I would get scared, stiffen up, making it difficult to drive. It lasted about a month and suddenly, as fast as my fear had developed, it was gone and I could drive this particular stretch with confidence and comfort again. I think this is somewhat similar mentally, yet also different because this is also physical. I just don’t exercise or walk as much as I used to. Surprisingly I had better balance when I was pregnant. And prior to that I was going to the gym and exercising fairly regularly, and getting out of the house more. I’ve had two physical therapy appointments thus far but I rescheduled the one this week because I hadn’t done any of the exercises in 2 weeks. It’s time to schedule exercising into my day, work on my balance and my strength, and beat this!
Grocery shopping these days is either a good experience or a stressful one. Kiana doesn’t always want to sit in the cart. She goes from sitting in the basket, to standing in the basket, to whining to get out of the basket, to trying to climb out of the basket, to wanting to push the cart, to wanting to be carried, to running away from us down the aisles.
Well yesterday we were at the store and my husband strapped her in the seat of the cart. She protested, but he had to go do some banking and she needed to be left with me. Once he walked away she stopped trying to get out. Her and I went over to the produce section to start our shopping and she was perfect. I pointed out different vegetables and asked her what they were and what color they were. She was fine... until Daddy returned. Then her arms instantly went up and she started to whine to get out of the cart. I think she knew I wasn’t able to get her out of the cart so she didn’t bother to ask me. It made me wonder if I would be able to brave shopping with her alone. Maybe she wouldn’t be such a handful?
I still don’t take her anywhere alone because I’m so worried she will run away from me in the parking lot, run into the street, and I wouldn’t be able to catch her. Or if I did catch her that she wouldn’t willingly walk back to the car with me. I suppose I could just use the stroller...
We were not even in the house 2 minutes one afternoon and Kiana was already finger-painting with diaper cream on the walls. When I went to take it away from her she ran away from me.with a big gob of it in her hands wiping it along the hall wall as she ran and then into the bedroom. I knew it would be easy to clean up so I wasn’t going to get upset about it but I still needed to get it off of her hands before it was everywhere and I had to backtrack too much. I asked her to wash her hands. She loves to wash her hands and make bubbles with the soap so I thought this would work. When I got a firm “no” in reply I had to think quick, because I’m not able to just chase after her, pick her up, and carry her to the sink. I had to figure out what to say to get her to come to the sink. So I said very calmly, “do you want to go to your room?” I had never used this before, or have never sent her to her room so I was surprised it worked. She came directly to the sink and washed her hands.
A few weeks ago we took down Kiana’s crib and upgraded her to a twin bed. This has helped tremendously in re-establishing a set nap time and getting her to sleep in her own room. And I haven’t had any frustrating afternoons since with her with an over-tired toddler and an over-tired mommy.
She got used to sleeping in our bed since I was never able to easily put her in her crib. It was just easier for me to put her down for a nap and for bedtime in our bed and then my husband would move her to her crib. Now I will lay down with her in her own room and at nap time, if she is not quite ready to settle down she can quietly play or read books. It is so much easier. She also likes her new bed.
She still comes into our bed occasionally at 5am, and I enjoy the cuddle time with her. This morning I woke up to the sound of little feet pitter-pattering down the hall. She came over to my side of the bed and stood there, sleepy eyed and still half asleep, holding her pillow, blankie, Bearbear, AND Dolly. How she manages to remember and carry all that while half asleep is beyond me? But she does it every time.
Home alone with Kiana today. Just had to put her in her crib to cry it out (I don't like doing that and have only ever done that 2 other times. Tim and I don't believe in letting her cry it out. I always lay down with her until she falls asleep. But she won't go down for a nap today and I need a break. But if she's screaming and crying in there for more than 5 minutes I will go get her.)
"Don't hit your sister!" "Stop pulling the dog's tail!" The number of things you tell your toddler or preschooler not to do is endless.
THE FIX Ask for the behavior you want to see. Nobody wants to raise a child who doesn't understand limits, but "parents say 'no' so frequently that kids become deaf to it -- and the word loses its power," Dr. Borba explains. Moreover, "we often tell kids not to do something without letting them know what they should be doing," notes Linda Sonna, Ph.D., author of The Everything Toddler Book. So save the naysaying for truly dangerous situations (think: fork in the electrical socket or your child eating the spider plant), and focus on telling kids how you would like them to behave. For example, instead of, "No standing in the bathtub!" try, "We sit down in the bathtub because it's slippery." Later, when you notice your kid splashing away in a seated position, offer some praise ("I like how you're sitting!") to reinforce her good behavior.
Before she reached the toddler stage I thought I could do this, that I wouldn't be one of those mom's who said "no" all the time. But, (ha!) now I'm thinking is this even possible? Yes, maybe Tim and I could cut down on the "no's" (I think we started doing it without even realizing it), but turning a no around into something more positive sure does take a lot more work, a lot more thought, and a lot more words. I tried this today. I do pick my battles and let her get away with stuff that's really no big deal, but some days I feel like I'm saying no all of the time.
Today I got to the point where I started throwing away toys. She has this little cheapy plastic duck (looks like a Happy Meal toy) that she started scraping on the wall. I asked her to stop, that we don't scrap anything along the walls (she's made marks before so we have a rule that nothing touches the walls; that it is not ok to color or make marks on the walls.). I told her that the toy is to be played with on the floor and if she scraped the wall again I would throw it away. (I had taken it away from her a few days ago for the same reason and she found it again today so this time it was getting thrown out!) So that is what I did, after having to chase her around the living room to get it. That brought tears.
Last week I bought those magic Crayola no mess markers that only show up on special coloring book paper so that I wouldn't always have to supervise her every time she wants to color; a coloring book I could just leave out for her to get to on her own. Well, the past few days I've caught her sucking on the tips or putting it on like lipstick. Yes, I know it's non-toxic but I still don't want it in her mouth. If I allow her to put them in her mouth what is going to stop her from putting a Sharpie in her mouth if she finds one of those in the house? So I told her that if she did that again I would throw it away. It went in the trash!
It's hard at this age because she's still kind of too young to understand. I think I need to find a mom's group or socialize with more moms so I can talk about this stuff and get ideas. This is all so foreign to me and I know this is all normal toddler behavior, but I'd like to know that I'm not the only mom ready to pull my hair out. How do mothers of 3 or 4 or 5 do it? (Or does it get easier with 2? Anyone with more than 2 under the age of 5, or a single-mom is a "super-mom" in my book.) Some people must have amazing patience! Or maybe they let their kids run wild? Or maybe they are yelling and screaming all the time? Or maybe their kid is in front of the t.v. all day? Some days are exhausting.
And the thing is, I believe I was blessed with a pretty easy child. Most friends that baby-sit her are amazed by her. The morning went very smoothly. She doesn't need constant attention, she plays quietly and contently on her own while I'm preparing meals and cleaning up. She's a very happy girl. Very pleasant and sweet. Not high maintenance. It's mainly in the afternoons, when we are both tired, that I notice her testing her boundaries more.
Anyway, Kiana is now asleep. Didn't take long.
btw: I got out of changing a poopy diaper today because she went in the toilet. yay!
*** And yes, I did notice that the title of the article contained the word ALL.
I don’t know how I am going to survive. I thought I was a very patient person but I’m discovering that having a toddler takes more patience than I might have... and definitely way more energy than I have. Some days I feel like either breaking down in tears or screaming,
Kiana is 20 months and is getting to the age where she is testing her boundaries, climbing on everything, getting into everything, not listening, and throwing tantrums. I read up on toddler discipline: to be consistent, to pick your battles, to be patient, to stick to your guns. But soon, if not already, she’s going to discover that mom can’t catch her and I’m afraid she’s going to take advantage of that.
I’m not sure how I am going to approach this. It’s not like I can just easily pick her up and remove her from the situation or room Or if she gets ahold of something she’s not supposed to have, I can’t just chase her around the house (fyi: dangerous things are far from reach or in locked drawers). Or what about time-outs? How am I supposed to get her to the time-out chair? I’ve considered doing what all mom’s do, counting one-two-three, but then I wonder what can I physically do once I get to three? That is going to be ineffective because she’s going to learn that I can’t do anything once I get to three because I can’t pick her up or I can’t catch her.
This is going to be frustrating for me. Sometimes after I’ve taken her off of the counter top or table three times in a row I feel like just giving up (I have to sit in a chair to remove her because I don’t have the balance to remove her while standing), but letting her on the counter top to get into things she’s not supposed to is not only dangerous but also inconsistent when I tell her no the first three times.
Any other physically disabled mothers have any pointers for me? What worked for you?
The other day Kiana and I were out sweeping the garage when I fell down. It wasn't a bad fall but Kiana ran over to me so fast, grabbed my hand, said "help, help", and tried to help me up. She then hugged my legs and kissed my knee. I assured her that I was o.k. and thanked her for the help. It was so sweet.
The reason why I haven’t posted in awhile is because I don’t know what to write about. Things have been going pretty smoothly and I haven’t faced any new challenges in awhile. I know I have some new readers who are new mothers and I was wondering if any of you had any questions for me, comments, or suggest a topic for me to write about.
I haven’t officially started potty training Kiana although she has shown an interest in using the potty for about 5 months now. I will put her on when she asks or if I ask her and she says yes, but I haven’t gotten serious about potty training her. Lately though she has started pulling off her own diaper so I think it’s time to start. I just don’t know how I’m going to go about doing this. My idea is to let go without a diaper, but the problem with that is that I’m unable to pick her up and race her to the nearest potty at the first sign of having to go (I have a potty chair for any room in the house and potty seats on both toilets). I recently bought Pull-Ups and my other idea is to just put her on the potty every hour and see if she goes, and praise her when she does.
I’m not into rushing this, but does anyone have any suggestions for what worked for them?
A couple of weeks ago my husband, daughter, and I were walking out of Starbucks and there was an older gentleman sitting at a table outside. As I walked by I heard him say “cerebral palsy?” I turned and said “yes”. He then said that he had 5 year old twin granddaughters and that one of them had cerebral palsy. I asked him how she was doing and he said very well. He then asked me if I found that it was hard to make friends? I kind of shrugged and said I guess so, but that I had my group of close friends growing up and that I did not feel like I was lacking. He also asked if my husband and I grew up together, to which I replied that no, we met in college. We did not chat for long but I hope that I was some encouragement to him seeing that I was married and had a daughter.
Awhile back I was in a Bible Study and a woman was sharing her story about raising a child with a disability. She broke down in tears when she told us the story of them recently getting a puppy. She said that her son said to her that now he had a friend. She trusted in God to lead him, and trusted God in what ever her son’s future would hold, but (normally) she wondered if he would ever lead a normal life, ever be able to live on his own, ever get married, etc. I approached her after the study to say to her that as a disabled person myself that her son is probably stronger than she thinks and that he is so blessed to be raised in a Christian home with parents that pray for him every day. She was grateful for my comments.
It wasn’t until after hearing this woman’s story, did it even cross my mind that maybe my parents had thoughts like this when I was growing up. Now maybe I should confirm this with my mom before writing this post, but it makes me kind-of sad to think that they would have wondered these same questions... because I never wondered these questions about myself.
My parents bought me a car for college graduation. My mom shared with me later that they felt like they just left me with this car wondering if I would ever be able to actually drive it. The reason they bought the car is because I told them that I would need it to find a job and for transportation. I guess I just figured I would learn how to drive. I did have my driver’s license but when you get your driver’s license in a small town with no stop lights, no traffic, and a two lane highway, well... it doesn’t really give you any experience for driving in a city, parking in parking lots, changing lanes, getting on the freeway, etc. But that summer, with the help of friends, I learned. My mom also admitted to me once that she also had wondered if I would be able to live on my own and cook for myself, but that she also knew there were options like in-home care and pre-packaged meals that could make life easier. Turned out, I didn’t need either.
It also wasn’t until I had a child of my own did questions about my own child’s future pop into my head... and she’s not disabled. But I don’t dwell on these. I pray, and trust in God that she is in His hands. So I can only imagine the questions about my future my parents might have had.
I hope this post is an encouragement to a mother out there raising a disabled child. I don’t remember ever feeling pity for myself wondering if I would ever be able to live on my own, find a job, get married, have children. Yes I experienced flat out discrimination when looking for a job, but I wasn’t going to let that stop me and eventually I found employers that saw past my disability. I am strong, stubborn, and determined to accomplish those things I set my mind on...and patient. If you can not change your circumstances at that time, you can always change your attitude toward your circumstances. A dream I had growing up was that I would get married and have a family, but also in the back of my mind part of me knew that might not be a reality. But I chose not to dwell on that. I chose to remain positive, because feeling sorry for yourself doesn’t get you anywhere in life.
Um, I have kind of gotten off track, and I don’t know where I’m going with this so I think it would be best if I just stop now and say goodnight.
Well... it happened. The thing I knew I would never be able to do. The thing I tried not to think about because it saddened me the most. My baby fell asleep in the car and I was not able to carry her into the house.
Kiana fell asleep in the 3 minutes it takes to drive home from the baby-sitters. She was so peaceful. So sound asleep. But I had to wake her and make her walk into the house on her own. And it made me sad. She didn’t seem to mind, didn’t seem to be affected by it. She fussed a little when I pulled her out of the carseat, but then she walked/stumbled into the house half asleep, asked for milk, and then cuddled with me on the bed.
I don’t know why not being able to carry a sleeping baby or child in from the car is so upsetting to me, because she’s never going tro know the difference. But I guess it’s because I remember my parents carrying me in from the car and placing me in my bed after I had fallen asleep on the car ride home. A few years ago I watched the movie “Things We Lost in the Fire” and the only reason that movie was memorable to me is because there was a scene where the father carried his sleeping child in from the car and I remember thinking that I would never be able to do that.
If the stroller had been easily accessible today I would have tried to lay her in it and wheel her in the house. But, it wasn’t. Oh, well. I’m going to end this post. Kiana got her nap today and was unfazed by being woken up in the car. It was just a sad moment for me.
A couple of months ago I was at a resort having Sunday Brunch with my husband, daughter, and my parents. My husband was going through the buffet with me while Kiana was at the table with Grandma and Grandpa when my previous boss’s wife came up to me. I hadn’t seen her in four years, so it was one of those surprise encounters of “Hi. Wow. How are you? What have you been up to?” And I was so proud and excited to tell her that I was now a mom. I didn’t even care to mention about my job.
My ex-boss’s wife was happy for me. I had talked to her about wanting children 4 years ago so she had already asked the questions: “can you have a baby? will he/she be disabled?” etc., etc. But I knew she would probably go back to her husband and tell him that I was a mother and I’m guessing his reaction was shock. And I knew he would tell my ex-coworker that I was a mom. My ex-coworker is a mother as well, but I always got the vibe from her that she had an I’m-better-than-you, younger-than-you, don’t-need-a-college-education-to-make-more-money-than-you attitude. When we first moved here I was shocked at how many jobs a husband and wife had between them to raise a family. It is like 3 or 4. I’m thankful we have been able to continue to live here on 1 and ½ incomes. I’m so happy and proud to be Kiana’s mother. I’m proud that as a family living in a very expensive State that we sacrifice luxuries to put family first and that I only need to work part-time and am able to be home to raise my daughter. Aside from my relationship with Jesus, my family is the most important thing to me. So I’m proud that I didn’t feel like I needed to mention that I worked part-time because the fact that I was a mom was all that she needed to know. (So ha! I’m a mother too, but I stay home! (yes, that’s the evil side of me coming out.))
I had a woman a few months ago ask me if I lived on my own. When I said yes, and that I was married she was shocked. I decided it might be too much for her to take to mention that I was pregnant too. I’m a lot more capable in the comfort of my own home than I appear to be out in public. As a child I learned to ignore and not to be bothered by the stares and looks I get from others. But sometimes they do make me nervous and when I feel like someone is watching me, I start to tense up and shake and become less able of doing the task, making me appear to be even more disabled.
It is interesting the different reactions I get from people when I tell them that I’m a mother...or that I’m married, or have a college degree, or drive a car. Even from family and friends whom have known me for years. When people found out I was pregnant they had so many questions.
I didn’t have the answers as to how I was/am going to raise a child, but I knew/know that if God was going to bless me with a child that He knew I was capable, and that gives me peace. God does not give you more than you can handle (without Him). “I can do all things through Christ who strengthens me” (Philippians 4:13).
I wanted this post to be about my pregnancy or labor and delivery, which is why I haven’t posted in awhile. I’ve been putting it off. It seems too daunting of a task. I’ll get around to it soon. But in a nutshell: my pregnancy- normal; labor and delivery- FAST, no drugs, natural, normal. “Normal” meaning that my disability did not affect my pregnancy or ability to deliver naturally.
I’ve started writing a post on pregnancy but the words just are not flowing. But I wanted to post something today... anything.
It’s a Saturday and I’m ready to face the day with my knee pads on and a thermos full of coffee. :)
My baby is now 15 months. Wow! Where has the time gone? She is getting easier to take care of, physically, for me. She understands a lot more of what I say, she’s able to communicate to me more, both in words and sign, and she is more capable of helping me.
Kiana is now practically dressing herself. She knows the process of putting on a shirt and shorts and puts her arms through the arm holes herself.
I still need to give her a toy to keep her busy during diaper changes, but most of the time she stays still. Sometimes, now, when I say “diaper change” she’ll run over and pull out the diaper changing pad for me.
The other day when I was getting the milk carton out of the fridge I realized it was too heavy for me and had to set it on the floor. Kiana came over, picked it up and tried to set it on the counter for me but it was too high. What a little helper.
There are new challenges though. Like trying to race her to the bathroom and get the door shut before she comes in with me and pulls all the toilet paper off the roll. She’s fast.
Kiana is an energetic little toddler, but she is very patient with me. We are beginning to adjust to my husband’s new work schedule and classes. Her and I are home alone more, with my husband schedule including working a couple of nights a week and in classes every other weekend. (She is only in childcare 3 days a week which is wonderful.) Fixing dinner with a toddler is interesting, but thankfully she does well at entertaining herself and is very independent (no t.v. in this house).
We have fun together and continue to learn from each other every day. She is such a blessing to our lives.
It has been awhile since I have posted. Sorry about that. Life has been a whirlwind of activity the past 2 months and it has only continued into the new year, but I resolve to write more often.
One major change in our life is that we moved. You may be asking, what does moving have to do with raising a child as a mother with a disability? Well, a lot actually. I’ve moved several times thus far in my adult life and it’s always a challenge for me to adjust to a new environment.
The challenges I face, just to name a few, when moving into a new place (as you can tell by now I like organized lists): 1. the feel of the floor under my feet affects my balance. 2. getting used to a new floor plan (specifically the kitchen and dining area) and moving about and doing tasks in the most efficient way without expending unnecessary energy. For example, getting an item out of the refrigerator, oven, or microwave and having somewhere to place it quickly before I drop it. Then preparing a meal and getting it to the table in as little trips as possible but without dropping anything on the way or losing my balance. 3. getting into/out of and balancing in a new bathtub/shower. Not all bathtubs are alike to a physically disabled person. There’s the height and width of the tub, the position of the toilet in relation to the tub, the slipperiness of the bottom of the tub. 4. the slope of the driveway and the ease of getting into the house, especially with bags of groceries.
And then add caring for a child in a new home to all of that.. It really does take me awhile to get used to and to feel comfortable living in a new environment. But I must say that I love our new home and I have plans to write an entire post just about the kitchen at some point.
I don’t think anyone enjoys trying to find childcare for their child. It really is a pain. But here I am, once again, trying to find childcare. *sigh* And... once again, it’s urgent.
Reasons why it has become a challenge: 1. finding someone with space available for her age 2. finding someone to watch her part-time 3. finding someone to watch her as early as 6:45am 4. AND, what makes this even more complicated, is that I am not able to get her into the car to take her. So...
We have to work around my husband’s schedule so he can drop her off in the mornings on his way to work. I think I would be able to pick her up from childcare, after I get off work (I only work part-time), if the provider is able to put her in the car for me because I can take her out of the car once I pull into the garage. The frustrating thing is is that my husbands schedule varies from week to week and is never consistent, which makes giving a childcare provider a schedule impossible.
Of course, then there is the obvious fear, and one that brings me to tears, is the thought of dropping Kiana off with a complete stranger to trust to care for her as I would.
Ideally I would prefer Kiana to only be in childcare 3 days a week. This would reduce the cost of childcare and, most importantly, Kiana would be home with us. In a perfect world I would be a stay-at-home mom. I think IF we have another child, I will stay home because the cost of putting 2 in childcare is ridiculous.