Just be her Mom? 

Thinking back to a social media post I shared about being a mom and all of the duties that come with that title. The post was about all of my day to day duties and everything that goes into raising and caring for my daughter who has significant special health care needs. I thought about how I, as her mom, complete daily tasks that several professionals would do individually in another setting. Examples: nursing to handle medicines and tube feedings; respiratory therapist to handle breathing treatments, suction, cough assist and chest percussion therapies; a physical or occupational therapist would handle stretches, massages, and other movements that help with muscle tone and spasticity, her scheduler managing numerous appointments to doctors and specialists. Those are just the medical side. She still needs the things that all human beings need and want: shelter, cleanliness, entertainment and most of all love. 

When you are a single parent and doing all of those things daily; just being her mom gets lost! I find myself “on the clock” more than ever. It all seems to be heightened since living through a pandemic for almost two years now. There is no escape from or break in the daily routine. No days to sneak away to the movies. No Target runs that lasts for hours at a time; with Kerstin enjoying people watching and listening while browsing the clothing and accessories. Yes, her momma got to enjoy the treat of a Frappuccino from Starbucks and checking out the clearance endcaps. Those things are so dearly missed as we continue in our pursuit of keeping a young lady who has multiple disabilities, one being Restricted Lung Disease (RLD) safe and as healthy as possible.

Just be her mom? That is hard to do when, 24/7, I am wearing so many hats with barely any break in the cyclical nature of each day. We are not going many places, as I mentioned earlier, to break the pattern often besides doctor appointments, drug store runs and grocery drive ups. There are no vacations or holidays. Even on those days, you, mom-caregiver are always “on the clock”. We are not making visits to the homes of family or friends and there are rarely visitors to our home, for the obvious safety and health concerns. The things we are doing for “fun” still keep us safe at home: new movies when they are available to stream or yard meet-ups with family when the weather is nice and health permits. 

Just be her mom? In order to do that safely, effectively, and efficiently, mom has to think of herself as well. The things that I do to pamper and comfort my daughter are some of the very things that I need for myself. This is why self-care, self-love and mental outlets are so critically important. As parents of children with special health care and disabilities, we are often reminded of the quote, “You cannot pour from an empty cup.” There are so many days when we are on our hamster wheel, running on fumes and seemingly going nowhere, we must remember that in order to be top notch we have to me caring and considerate of our own well-being.

The act of looking after the care of another who is either sick of disabled is “caregiving”. While providing care for my daughter is expected and required, doing it non-stop and as a single parent can be tasking. Exhaustion is real and it is not just physical. Burnout can set in and cause a parent/caregiver to be less alert. This weariness can potentially be harmful for the person we are caring for when their needs are not met in the proper manner.

 Just be her mom means that I am taking care of myself. Yes, enjoying the journey of growing knowledge of what it takes to care for my daughter and all of her needs. Advocating for her care, health, inclusion, rights and more. In doing all of those things for her, I have to do them for myself as well. Take breaks, read some fiction, stream a series or two, get outside to look up at the sky, feel the breeze and the sun on your face, grab that macchiato or latte or Frappuccino. Do something you love! Talk to someone, professional, if you feel that is what you need. Take care of YOU, holistically. Keep that quote, close to your heart and in memory; keep your cup as full as possible, that is the best way to just be their mom, dad, sister, brother, grandmother, aunt, uncle, etc..

"Parenting a Child With a Disability Through the Holidays Stress Free"

     The Alabama Parent Education Center (APEC) has some tips on avoiding additional stress during the holidays.

While most children live for the holiday season, it can be an extremely stressful time of year for children with disabilities and their families. The disruption to their routine, unfamiliar sights and smells, the house full of noise and people - it can all prove to be too much. Holidays are all about the family, but it can be hard keeping everyone happy.  While the words "stress-free" and the "holidays" don't often go together, at the Alabama Parent Education Center we want all children to enjoy this special time of year.

Tips To Prepare

To help you prepare for surviving the holiday season, we have compiled the following tips to help you, your family, and your child with a disability have a much happier, reduced stress holiday.  Good preparation is the key so here are a few tips to help you prepare yourself, your child, and your family.

Reduce The Stress.  Try to find ways to reduce the stress - both on your child and you. Schedule in quiet times and create chill-out zones in your home. Remember, your child will pick up on your stress levels, so try not to over-stretch yourself.

Ask For Help.  Friends and family may not know how they can help unless you tell them. Give them a list of things they can do to support you - from looking after your child while you spend quality time with your other children - to helping you finish the holiday meal.

Wrap Up Familiar Toys.  If your child is not keen on opening presents because they're new and unfamiliar, try wrapping up some favorite toys. Sometimes unwrapping something familiar is very reassuring.

Give Your Child A Job And A Schedule.  Always give your child a job to do at family gatherings.  Giving them something to do reduces their stress of having people in the house. I also give them an itinerary so they understand, for example, that people stand around and chat a lot, and that is part of the occasion.

Manage New Smells.  Add cinnamon to your child's play-dough to gradually introduce new smells. One thing that people with autism complain about during the holidays is the many different perfume smells coming from visiting adults. Ask your family and friends to hold off on the perfume.

Work On Gift Giving.  Help and encourage the person you are caring for to give gifts. This provides an excellent opportunity to work on social skills, like thinking of other people's needs and interests, and being kind and helpful. Support your child in making gifts for their family and friends and assisting them in giving out the presents as well.

Reserve Some Special Time For Your Child.  It's easy to get overloaded with festive preparations at this time of year, so plan daily activities to make some special time for your kids - ie. 5 to 10 mins of undivided attention. Let your child take the lead, tune into their world and see it through their eyes.

Create A Weekly Calendar.  Print off a week-to-view calendar page from your PC or the internet and add a picture of your planned activities during the holidays (divide into morning, lunch afternoon etc) and this will help put your child at ease about the week ahead.

Prepare Your Family.  Talk to family members ahead of time. Discuss your child's specific needs, and gently but firmly tell them what your plans are. Be sure to let them know that this will make the whole experience better for everyone. Ask for their support.

Prepare A Bag Of Activities.  When you are visiting friends or relatives, fill a backpack with things your child finds comforting or enjoys playing with - toy cars, a stuffed animal, a CD and CD player, ipads, or a few books. If your child gets over stimulated, find a quiet corner or a back room and pull out the backpack.

Easy To Open Presents.  If your child has trouble with fine motor skills doctor their cards and presents to allow them to open easily. Makes for a much happier time for all and gives your child a sense of satisfaction that they can complete tasks.

Have a Code Word.  Have a code word your child can use if he or she feels overwhelmed and needs a break. Assure your child if he or she uses the code word, you will respond right away. Again, giving children some control during activities that may be over stimulating for them will reduce anxiety.

Prepare Before an Event.  Before you leave for holiday parties, parades, or other fun events, have a quick family meeting so your whole family knows how long you plan to stay and how you expect them to behave. This will benefit neuro-typical children as well, since any child can get overwhelmed with the excitement of the holidays. Continue to make your child's sleep schedule a priority, even in the midst of so many special events.

Prepare for Food Allergies.  If your children have food sensitivities or allergies that prevent them from eating holiday treats, plan ahead to offer alternatives like all-natural candy or a gluten-free treat from home. Children with neuro-behavioral disorders like ADHD or Autism often already feel different, so be sure to include them in as many holiday festivities as possible.

  

 Limit Holiday Decorations.  If your child is easily over-stimulated, limit holiday decorations in your home. Too many twinkling lights combined with smells from the kitchen and other holiday distractions, while enjoyable to most, can be too much for children with autism, ADHD, or sensory disorders. Let special needs children help you decorate for the holidays so they are involved in the changes that take place in their comforting environment.

APEC is here to help

APEC provides free training, information, and consultation to families.  Visit our training calendar for more information about learning opportunities at www.alabamaparentcenter.com  or call our center.

The contents of this publication were developed in part under a grant from the Alabama Department of Child Abuse and Neglect Prevention.   To help support the ADCANP mission visitwww.ctf.alabama.gov.  Parenting  V.2

To view our updated list of all training events visit our online calendar at:

http://alabamaparentcenter.com/events/calendar.php  

Happy Veteran's Day

     To all the men and women that are serving, have served and the deceased, Thank you for your service!  If you have served, and suffered or are suffering from post traumatic stress disorder, hopefully you are getting the help you need and have a great support system!  

Not all moms share the same secrets.

     I recently read an article from 2013, posted by a mom of a child with special needs.  The article was supposedly her list of secrets and titled "6 Secrets Special Needs Moms Know But Won't Tell You".  While I can't help but agree with some of the listed "secrets", some I cannot really relate to or just from a different perspective.  As parents, we all do things our own way and raising our families is one of those things. 

     Mom, Suzanne Perryman, in the article listed her 6 secrets and gave her reasons for them.  Her list went like this:  

1. Special needs moms are lonely
2. Special needs moms have to work extra hard to preserve their marriages
3. Special needs moms are not easily offended
4. Special needs moms worry about dying
5. Special needs moms are fluent in the transforming body language of touch
6. Special needs mom know how to savor the gift of a child saying "I love you"

I like Suzanne's list, and like I stated some I can relate to and some I cannot.  
     "Special needs moms are lonely", I can relate, at times it seems like no one fully understands what you are dealing with.  Taking care of a child who needs you for every single thing, doesn't give much room for other things or a very active social life.  The loneliness is especially harder since my job is with her at her school as her aid.  Sometimes even family tend to go their way socially and leave us in our own world.  Yet, they come back to "talk" about it all.  It may take us longer to get prepared to leave, once we do, it may take longer to load and unload but, we like being on the go.

     "Special needs moms have to work extra hard to preserve their marriages", okay!  I'm a single mother.  Kerstin was diagnosed and her dad walked away!  Yes, I have attempted to work hard to preserve relationships.  Even when love has been expressed to me and my daughter.  I guess when we can't always be on the go like others, it makes it a little bit easier to walk away and pretend we never happened.  That is one thing I cannot and will not continue to do, try to keep someone in our lives when they don't want to be here.

     "Special needs moms are not easily offended". I think that all depends on the emotions, the day and what's being said.  I am very easily offended by ignorance. Do I get offended when people ask questions about Kerstin, her diagnosis, her likes or dislikes?  Not at all.  What offends me are the stares.  The "what's wrong with her?"  Nothing is wrong with her, she's made the way she was intended to be made.  I like when I'm asked questions because you are genuinely concerned.  I think the more I can help someone understand, maybe the less stares she will get.  I am all about educating those we encounter, from the youngest to the oldest. 

     "Special needs moms worry about dying".  This is true.  I must admit that at times I have had very selfish thoughts about death.  I even wrote about Life Expectancy recently.  I often wonder what her life would be like if I passed away "now", before her.  I have even found myself praying that we go at the same time, that way I won't have to live and carry on without her and she wouldn't be without me.  Death is that one thing that is certain for all of us and we don't know when it will happen.  We just have to live each day and love like there is no tomorrow.  

     As far as special needs moms being fluent in touch and body language.  I know I have to be.  My daughter is non-verbal.  I have to notice her behaviors, her facial expressions and all.  She has a language all of her own. 

     "Special needs moms know how to savor the gift of a child saying "I Love You".  Again, Kerstin is non-verbal.  Her smile and those big beautiful tells me that she loves me.  When no one else is talking to me, my little love is a constant!  Feeling her arms around my neck is "I love you" enough for me.  Check out my Facebook update back in May.  It's moments like that, makes all of this worth it.  

     So, we all have secrets, we all have fears and we all deal with them differently!  One thing is for sure, we have to love our children, no matter the need or ability!

In all her tiredness, she enjoyed!

Suzanne Perryman, 2013.  6 Secrets Special Needs Moms Won't Tell You.

Coming to terms? Not really!

     Well, I thought I was "coming to terms" with the idea of Kerstin's upcoming surgery...now 25 days away.  This is not exactly the case.  It seems the closer it gets the more stressed I become.  I'm feeding her and fighting back the tears because all I can think about is, "How will they have her laying while they perform the surgery on her back?"  "How out of it will she be once the surgery is over?"  "Will she be in much pain?"  So many questions, that I don't have the answers to.  I do know that her surgery will be no less than three hours, meaning it will be some time before I will be able to see her once they take her back. She will be given anesthesia, it has to kick in before they can start, she will be in surgery for a few hours, then in recovery before I can see her.  After that she will be in the pediatric intensive care unit (PICU) for at least the first night afterwards.

     Everything is becoming so real now that all of the doctor's offices are calling to remind us of the many pre-op appointments she has coming up.  There is a full day ahead of us this coming Monday.  The day will start with an x-ray of her spine followed by a CT of Thoracic and Lumbar spine, first ever visit to a pulmonologist, a follow up with neurology all followed by APASS (Anesthesia Pre-Admit Screening Service).  What a day it will be!

     I'm praying daily for the strength to carry on, but I feel so weak and helpless at times.  When she's moaning and I don't know what is going on or what I can do to console her and make it better.  When her arms or legs are shaking and there's nothing I can do to stop it.  No matter what I do at that very moment, nothing seems to help...there's nothing I can do but cry and pray!  It is very hard, most of the time.  No matter what's going on, how I feel...it seems like there's no break, no sick days for me!  So, I press forward.

Home away from home, in a few weeks. 

 
More to come...

The stress of being mom and all...

Being a mom is hard work, no matter if you're married, single parenting, raising one or twenty kids.  Raising a child with a disability coupled with single parenting is tremendously hard.  It has to be done!!!  I  never knew how much stress can affect you until this month.  After hearing that my daughter has scoliosis and would need another surgery on her feet, all of that along with...yeah, her hip is still dislocated, I was totally drained.

I took my daughter to be fitted for the jacket and the boots that she will have to sleep in and that day I felt myself feeling week in my back and leg...being 'supermom' I let it slide.  We had a nice outing afterwards, went to see "Hop" and the pains grew and grew, going from my back hurting to feeling okay then my leg would feel like it was just cramping...when I tell you that today April 19, 2011 is the first day I've been feeling okay.  Still not 100% but I can bend without pain and sit and get up without pain.  On last Friday, I had taken my daughter to school, and I was eager to perform my duties as her paraprofessional but the pains were unbearable, and I decided that I had to get that much needed break.  That's what we did!! We came home and relaxed!  Long soaks in the bathtub and leg cramps pills along with Motrin did the trick.

Basically what I'm saying and telling myself is that I need to take care of self as well...take mental breaks ( those are few and far between ), I have to because my princess needs me!!

More to come...