Time is a Thief

I don't remember the first time I heard the sentiment, "time is a thief." Recently it is heavy on my mind. I haven't posted on this blog in 6 years. My 48th birthday is this month and it's been a rough year to say the least. My father passed away last year. We didn't have a good relationship since my mid-20's. Regret, what-ifs, sadness, shock are a few feelings that have stuck with me for the past 13 months. If I could go back, what would I have done better or different? How did his parenting affect and influence me? Being a responsible role model and showing my girls love have been at the top of my list. I want them to know, no matter what, I have their back and they can count on me. I think their dad and I have coparented well. Looking forward, my daughters are now teenagers and my oldest will be 18 soon. How can this have happened? Where did decades go? Where did 18 years go? Looking back, I started this blog 15 years ago after Sadie's rare chromosome disorder diagnosis. A moment that forever changed who I am. I wanted to share our story with other families who felt lost. I hoped I could connent with other families with 8p22.2 deletions. I knew nothing about Facebook in 2007 and could have never imagined to connect with so many people on online. They have brought me comfort and connection, even though we have never met. The beginning of our journey felt so lonely, I wanted to meet other 8p22.2 deletion families, but along the way I was met with a surprise. There are so many families on their own journey with a different diagnosis, but as parents we are all so connected, we are all the same. Searching for answers, friendship, connection, and the hope to be accepted and understood. I met the most amazing people through local disability organizations. In the beginning, there was so much energy and drive to fix her through therapy and education. Pressure to be faster than time and wishful thinking that she would talk and be more independent. Please give me a heart full of courage, for if you think about it too long, your heart will break for wanting her to have the life everyone else does. I thought for a while I could advocate to help make change in programs and services, but it becomes exhausting challenging the system to understand and to do the right thing. Oh the tidbits of wisdom, I have now that I wish I could have passed down to my younger self. I hope I was able to help a few people and make a little change. Angelia Schwindt said, "While we try to teach our children about life, our children teach us what life is all about." I am a better person because of my children. Fast forward, don't blink, and here we are, December 2022. She is having dental work under anesthesia at the children's hospital in a week. While she is sedated they will also do a heart ultrasound to check on the VSD hole in her heart and the amplayzer device that was inserted in the ASD hole in July 2017. Next month I will start tackling the to-do list for all the documents and legal paperwork needed to prepare for her 18th birthday. The special needs trust, guardianship, Social Security, etc. It will just be another day to her, but to me, I worry about growing older and staying healthy as long as I can. Please let me live to 100 to take care of her. I worry what the transition to adult doctors will look like and leaving the comfort of pediatic physicians, all of them have been amazing. I think she's happy and likes school. She loves to ride the bus to school, but it's bittersweet to see my friends' kids, all her age, begin to drive and get their first jobs. As I've gotten older, it is easier to accept, but sometimes the sting of envy gets me and I feel choked up a bit. We have a lot to be grateful for and I try to remember that. Even though she is fortuate enough, thanks to the hard work and advocacy for IDEA, she can stay in school till she is 22, but the early morning bus rides at 6:15am and long days are exhausting for us both. When the time is right, we will follow our own path. Maybe we can start our own day support or social group and make new friends. There's so much possibility. On that note, I will conclude with the true sentiment, "Motherhood: the days are long, but the years are short." - Gretchen Rubin and Time is a thief.

#hrsnow

After watching Frozen twice, they finally went out for a quick run in the snow. Of course takes one kid at a time to bundle up. Sadie was being impatient, but it was rather cute when she realized the deck was freezing and she ran back inside. I got her dressed and the first thing she wants to do is sit and eat snow. 

herrarelife with a dog

As they say, cleaning up after kids at this age is like brushing your teeth while eating Oreos, and so pretzels are not on my grocery list this week.  My daughter will snack on many things.  Sometimes she will eat chips, sometimes she won't.  Sometimes she will keep her snack in the cup and other times the cup is emptied on the floor.  Most of the time our dog Daisy is our little vacuum and will eat the snacks that Sadie spills.  I was reminded this week that pretzels and cheese crackers are not going on my grocery list for a while.  I can't imagine having Sadie without Daisy around. And that's the glorious life with a dog and a child living with a disability.  =)

9 Signs You Have a Good Caregiver for Your Child Living With a Disability

9 Signs You Have a Good Caregiver for Your Child Living With a Disability

If you have a child with a disability and they have a personal care attendant or caregiver to assist them, then you probably have to manage the hiring and firing of people who will take care of your child.  It can be exhausting at times to find the right fit for your child and your family.  However, when you find a good caregiver, the whole family experiences less stress, more happiness, and a better quality of life.  Some indications that you have a good caregiver for your child are:

1.        When she puts socks and shoes on your child, does she make sure the seam and sock are pulled on correctly, not twisted and awkward?  She knows how uncomfortable a twisted sock can be.  When she puts on her shoes, she makes sure they are just right, not too tight, and not too loose.  When she sees your child tugging on her shoes, she will double check to see if it’s on comfortably.  Seriously, who wants to walk around with twisted socks?  People who care will pay especially close attention to this.
2.       When you see your attendant dress your child, she will make sure all the shoulders and arms of the shirt are straight and comfortable.  Just like the shoes and socks, she is aware how uncomfortable twisted clothes can be and she is truly concerned with the comfort of your child.  Especially in the winter months when we wear hoodies, extra layers, it’s just so frustrating to feel confined and unable to straighten out a twisted outfit.
3.       Have you ever gone out to run a few errands or go to work and come home to find out that your child’s caregiver hasn't changed your child’s diaper, given her a drink, and the recently watched history on Netflix shows “Flashdance?”  Yep, that’s not a good caregiver and yes that’s happened to us.  A good caregiver is concerned with Maslow’s Hierarchy of needs, does your child feel safe and cared for, and does she have access to a drink of water or food?  A good caregiver knows kids need water whether they have a disability or not.  A good caregiver knows that sitting in a soiled diaper cannot be comfortable.  Some things go without being said…. Water, food, and a dry diaper.  Come on people… do for that child like you would do for yourself.
4.        Without being told, the caregiver takes your child out of the house.  She knows that people need fresh air and to see the world.  She knows that being cooped up in a house all day will drive anyone stir crazy.  And even just a 30 minute walk around the neighborhood is so refreshing.  People need to get out in the community and be around other people.
5.        When your nonverbal child goes to the refrigerator, the caregiver tries to meet the child’s needs and desire to get in there… probably because she is hungry, not as a behavior.  People that pay attention to all aspects of your child’s behavior and communication are awesome.  Those caregivers WANT to communicate and meet the needs of your child.
6.        How about some eye contact and talking… Does the caregiver treat your child like a person? Does she look in her eyes and face when your child is communicating? Yep, good signs they are a good caregiver.

   

   "she's my favorite person" ~ Emily

7.        One sure way to know someone cares, if they have technology to do this, they will take many photos of your child throughout their time together.  Our most caring caregivers send me photos of our daughter while I’m not with her.   Also, the captions, will say something like “isn’t she beautiful” or “she’s my favorite person.”  You know you've got an amazing caregiver when you know they genuinely care for your child.
8.        When our daughter can’t wait to sit next to her caregiver and hug and love on them, I know I’ve got a good person with her.  When your child runs away from people and fusses when the person tries to reach out and take care of them, you better trust your gut and know that person doesn’t “get” your child.  We all don’t connect and have chemistry.  It’s important to recognize that your child will connect with some people, but not others.  That’s OK
9.        When your home is seen as a home, not a work place, and when caregivers come over, they show interest in your family and your child.  They know they are there to help the child and therefore that helps the family. 

These certainly aren't all of the qualities that make up a good caregiver, but empathy and understanding, and overall genuine concern that your child is cared for will show when you see the little acts of compassion through the actions of someone else toward a person who can’t speak for themselves.    

~ dedicated to Emily, Kim, and Meghan, thank you for all you do and have done for Sadie

documents

If there is one thing and one thing only that I hope all people take away from this post, especially families living with disabilities, please get documentation and copies of documents that are being disseminated, published, and shared about your child.  This includes case managers, service facilitators, insurance documents, doctor's notes, etc.

Unfortunately, some people will write incorrect information about your case. While we are completely self absorbed in our own lives, we have to remember that humans make mistakes and document life incorrectly at times.  I have no doubt that government case managers are over worked and underpaid, but this does not excuse the mistake.  As a parent you MUST ask for the documents that are being written about your family members.  It's your job to be their advocate and protect them.

Case managers have dozens of cases and I have no doubt that dealing with so many people and their issues can get quite confusing.

Most recently, a case worker, who is supposed to be an advocate for my daughter, wrote a grossly inaccurate account of her behavior.  I was shocked and left unbelieving what I read.  When I asked the case worker about the inaccurate sentences in my daughter's file, she quickly blamed it on the last case worker. Now, please know this, this case manager came to my home simply one time for at most one hour.  The case worker who she blamed the mistake on, had also only come to our home one time for an hour.

I had repeatedly asked for the copies of documents from the first case manager and then from the second.  I was forced to be persistent and firmly assertive.  I do recognize they have challenging jobs, but I have a challenging life to protect my daughters rights and her story from people who see her as a case number not a person.

So, I end this post begging you to get copies of all documents (and read them) and be an advocate.  Sometimes we assume too much that people are doing their jobs; however, everyone needs to be in charge and advocate for themselves and their loved ones.

Being Grateful for Her Friends.

"Goodbye Sadie, I love you!" yelled Albert as I was walking away with her to go home Monday afternoon from school.  I looked back in awe, to see Albert smiling toward us and waving so sweetly and genuinely.  It's unconditional, innocent and the true sign of emotion and friendship between two children with disabilities.

This is Sadie's third year in the same intellectual disability self-contained classroom, which she has shared with several of the same students all three years.  Albert is one of several students who genuinely cares and looks out for Sadie.

Back in October, I attended a farm field trip with the class and saw the friendship between Sadie and her classmates.  Another student also calls after Sadie throughout the trip and smiles and wheels himself up next to her legs to reach out for her like children do with each other.  I feel that tingling surge of emotion to know that she DOES have children that really care about her.

Children's Museum

Last week, I attended another field trip to the Children's Museum and the same children called after her and reached out to touch her and interact and to just simply be her friend.  Even another child with a disability from another class walked up and leaned over and kissed her on the cheek, I dare say this might have been her first kiss, but I'm certain these kids love her and show her affection often.  Toward the end of the trip Sadie accidentally got bumped in the head, and one of her classmates asked over and over, "Is Sadie going to be alright," as she watched with genuine concern while Sadie was crying.

All of these emotions and special moments together really got me thinking about how close children are with each other while they are in a special education class.   They spend all day with each other year after year and form close attachments and bonds with each other.  They are friends. Is it no wonder that when they transition to Middle school that many struggle leaving their elementary school, teachers, and friends behind.

We are busy being parents, teachers, and adults, do we realized these children's lives are completely changing... they lose friends, navigate new buildings, new environments, new teachers and assistant teachers.  Change is hard for those of us who are "typically developing," is it any wonder children with disabilities might struggle with the change of losing a friend, and place they called home away from home for 5+ years.

Sadie won't go to middle school for at least three more years and I'm so grateful for the children she is surrounded with in her class today.  It's the most thankful feeling to know your child has friends.