Expectations vs. Reality - millennial parent of children with special needs edition

Lean in just a little as I unfold some confessions! The confessions of a parent, the taboo stuff, the stuff no one wants to talk about or admit. Follow along as I share some funny and not so funny experiences of the real life expectations and humorous realities of a millennial parent trying to figure out this whole special needs parenting thing.

 Below are stories and pictures that I'd like to share with you. #TeamNoJudgement

Expectation

Reality

The expectation any time I try to plan self care, is usually me at a store figuring out what I can purchase to engage in self care. Being a mom of children with special needs require me to engage in self care daily. For me it keeps me healthy and able to serve them when I'm serving them from an overflow of my cup. The expectation when I bought that bath bomb was that I would be able to enjoy a bath with candles lit in the dark, with no one in the bathroom. That doesn't get to happen too often. I enjoy the moments of self care that I do get though!

If you notice in the second picture of the purple bath bomb, look at the tub, its miniature! Barbie got to enjoy my purple bath bomb, not me, barbie! My youngest found my stash of bath bombs and decided that her barbie needed some self care.
                                                   

 Expectation

Reality

When going grocery shopping or any kind of shopping, the expectation is to find a cart that can hold my two children. Even though my oldest is 13 and is taller than me, I will still let her sit in the large seat area of the cart - only if she wants to, usually when she's tired or something. Yes I get stares and I don't care, as long as my children are safe and happy. So anyways when I go to the store I love finding the big pushable cart right away and getting the girls situated and ready to shop. 

It doesn't always happen, see second picture. This was at a local grocery store and I needed to pick up dinner for the evening with both of my girls. I saw this situation of the pushable cart trapped behind so many other carts and quickly decided what I was going to do next. Do I wing it and let the girls walk with me? I could have and stated the behavior expectations while in the store, which I always do. But they both wanted the pushable cart. It was after school and both were tired. Luckily I spotted an employee pushing carts in a long line. The girls and I walked over to him and asked if he would please help us out, he sweetly got the pushable cart for the girls and all was well. Thank you Jesus! It's the little things that matter. The girls were safe and happy and we went to the store, got what we needed, and were out within 15 minutes. Little did that young man know but he was an angel that day! 

Expectation

Reality

The top picture was the expectation of me on my 30th birthday. Living my best life with loved ones at one of my favorite restaurants, Carrabbas. My nails, hair, everything was did! lol I expected the whole day to be like that but nope!

As you can see in the bottom picture, my youngest, did not care at all that it was my birthday. She was not having it. At the time she was an early three year old and was over the restaurant. I'm pretty sure she thought it was her day too, if you look closely you'll see our matching manicures. :) The reality is that no matter what is going on, what day it is, what event it is, what the situation is, it is and will always be about the children. Point blank. Their needs come first. Yes as a parent and especially as a parent of children with special needs, self care is vital. Your life and needs matter too. The kids are top priority though. 

This meme was sent to me from an important person in my tribe.

No matter how your reality with your children may look like, here are some suggestions of ways to graciously live through the realities of millennial parenting of children with special needs. I love reading articles that have bullet point list and I'm excited to share these with you. 

1. Have a sense of humor

Seriously don't take yourself, your life, or situations too seriously. Like you have to learn to laugh and laugh at yourself. The day-to-day can be rough and being light hearted and silly is good for your soul and mental health. Its also sweet for your children to see you be silly and playful with them. If you have a spouse, be silly with them too! Flirt and be goofy. Relationships matter so much and humor makes them a little better.

2. Find your tribe and love them

Being a parent in general and especially a parent of children with special needs can be challenging. You and your babies need a strong supportive tribe, village, and support system. A group of individuals who can offer moral support, emotional support, spiritual support, resources, respite, a shoulder to laugh or cry on, anything. This is the group of how ever many people you would like that may consist of family, friends, professionals, online communities, church families, local special needs support groups. They will be there for you and your family and you will be there for them and their family. Its a beautiful, healthy, community of people helping each other raise their children and live life together.

If you need a tribe, reach out! I can bet that there are other families of special needs who are looking for someone just like you to be part of their tribe. Great places to find people for your tribe are at church, social media online groups (facebook has groups for almost everything!), asking your children's doctors or therapist, reaching out to local organizations in your area that offer services that cater to your children's demographics and diagnosis. I know here locally in central Texas, great resources to find support systems and support groups are to call 211 and Texas parent to parent. Wherever you are located, please know that there are people who are ready and open to be your support, some may be online and that's okay.


3. Accept and Embrace your journey

Whatever mental image you had of what your life was supposed to be and look like at this age - stop. Let it go. Grieve for the life you thought you were supposed to have and embrace your new life and new purpose. For whatever reason, God chose you to be a parent of a child with special needs. He trusts you, believes in you, and has equipped you with everything you need to be all that your precious children needs from a parent. When God made you He thought of your children. He gave you all the qualities, gifts, talents, characteristics, and quirks that your little family would need. Know that God has a greater purpose for you being here and being a parent to your children and they are part of your purpose. Own and embrace your new fabulous journey. God thinks very highly of you and is rooting for you and your family to live and be well. Anything you may need, ask Him and He will give you everything you need.

4. Seek Professional and expert advise

By expert and professional advise, I mean seek God.Whether you are a believer or not, this journey will test you to all limits. Fears, hopes, self imposed limitations, everything will be tested. God is the source and resource that can and will help you. He will guide you and your family to seek other professionals and experts when you need to. He may lead you to have a conversation with a family member or friend that may suggest a doctor recommendation, or diet, or new research that could benefit your child. I'm no medical professional but I do know that if something is a daily and frequent concern it may be best to seek out professional advise and services. That could mean anything from medical doctor, therapy, educators, house cleaning services, hair and nails service, dry cleaning, or even grocery curbside. :) Seek out professionals for anything your family needs to do so for.

5. Don't be lazy, work hard and work smart

There's this unkind sometimes spoken complaint of millennial that they are entitled and lazy. But NO! They are not all like that and kiss that generalization good bye! My point is no matter how old or young you are, being a parent of children with special needs, you have to make the decision to work your behind off for your children. They may require specialized care, services, and therapies for most of their lives and all of those cost lots of money. They may or may not have medical insurance from the state but its best to not rely on that. You have to build and prepare financially for your children and all of their needs. There will be a day when you and your spouse, if you are married, will no longer be alive and you have to do the work now to prepare for your children's future. 

One way to work smarter is to be debt free. Dave Ramsey has amazing financial advice and his baby steps are tried and true and they work. You can find his books and his baby steps online. Another way to work smarter is to have routines and schedules for your children. Children thrive with routine and find comfort in knowing what to expect. At school and therapy they are on schedules and they know what their days will consist of. Set schedules at home as well. Yes its important to live spontaneously as well and be present but keep their schedule as similar to what it normally is. If something is going to change, give them a heads up and let them know. If your children struggle with transitions, give them a 10, 5, 1 minute heads up of a change in activity. Or however long they may need to know what is coming next. 

As well as stay organized with all of your children's medical, educational, and personal documents. If you have hard copies keep those in a binder or filing folder or cabinet at your home office or storage. You can also have an IEP binder, as well as scan and have a digital copy of documents saved to a usb drive. Anytime you visit with the school, doctors, or therapist you will have your child's information readily available. 

6. Be present and enjoy time with your babies

They grow so fast - enjoy them! Its so easy to be distracted these days by 1 million and 1 things begging for your time and attention. Your children deserve to have their mommy and daddy present and engaging with them. Spend time together outside playing, have family dinners with no technology, have no technology designated times throughout the day, sing together, dance together, smell grass and flowers with your children, smile together, and pray together. As well as engage in things that will bring you all in connection and be mindful of one another and cherish the sweet time and memories you are making. 

XO,

Minerva



P.S.: You are not alone on this journey. You can do this!