We have been in a steady uphill push for the last few weeks. The winter break is out temporary finish line and it’s a mad dash. So much is poured into a child with special needs- from testing to doctor visits to therapies to extra work at home to extra work from us. Each experience is unique but “extra” is the common thread. The “extra” is bearing down on us.
The past two Thursday mornings we have had the pleasure of company in the waiting room. My fellow waiting room veteran mom and I are ecstatic to let our three year old boys impromptu play-date while getting to converse with an adult. Yay! Today we dealt with the common thread of the “others.” We have at least three other children plus some transient bonuses. Each week therapy is two hours by the time we travel and complete a session. Two hours is a significant amount of time and we integrate/build in extra time during the week. That’s just therapy. There is time to teach, deal with melt downs, hugs, tackle problems, victory dances. Not all time consumed is a challenge. Our Ghost child can over shadow and make other ghost children. How do we find a balance of one who needs more and all of our children’s needs?
One simple solution I found in the waiting room. This was our time- Red and I. That hour he had my attention and we read book after book after book. It’s easy to check out because I am way over stretched. There has been many times I have dropped whatever to listen to a cheer practice, listen about football, read a book, discuss legos. Being mindful of opportunities that pop up then taking advantage of it helps them see their value while making the most of my precious energy. Very precious, minute energy.
Opportunities may not pop up. In that case be intentional and it doesn’t have to be costly. Extra time in presence goes a long way for siblings- from reading, talking, playground, etc. Simple is best and less taxing on everyone. Build in whole family events too. This is a great time of year for most towns and cities to have a variety of family bonding activities.
One thing I love about the center we are at is when a client celebrates a victory, the WHOLE family does too. Including prizes and affirmations. We all sacrifice and that needs to be recognized with attitude “we are in it together.” When a ghost child celebrates, everyone has a stake in that victory. Celebrate together.
Just as a growing family needs to communicate about a newborn, so does a family with a ghost child. I have lost track of the talks with our older two about why there are different expectations and handling of things with ghost child. Plus why it’s fair to be different. There is communication on how they can help their sibling ghost too. Like allowing extra swing time because it helps calm her. They help with speech goals and using self regulation tools. I have amazing kids. They are understanding most days and take to heart in helping her. There are times it’s understandably much and they need grace in that too. Age appropriate talks with siblings of a ghost child is imperative. You must do this.
Hug and love on all your little loves and bonus loves. You have a lot to give; please remember your pact as a caregiver to care for yourself.
Balance is possible most days and grace is necessary all days.
A recent question in a social media group reignites ponderings and some suggestions in hope to put both sides at ease. Follow the facebook link and look for “Seeking the Warm Fuzzies Part Two” in a couple of days. Naturally, food is involved.
I had it all set. Gut healing ideas with delicious recipes. Something was holding me back, what was it I truly needed to say? Those recipes are meant for next week. It started in my A.M. routine with a celebration of #internationalselfcareday and it hit the hardest after leaving #ghostchild weekly speech therapy appointment as #redreignofterror was screaming over a perceived wrong of seating in the car. Lots of deep breathing as I parent and process our new information. We will not be able to complete therapy in the short term with the addition of further testing and, hopefully, the additional of occupational therapy. Being a parent or caregiver is serious work. Being one with people with disabilities, disorders, syndromes, etc is over whelming. Finding balance between extraordinary needs, family dynamics, and just life is over whelming.
I have to put my mask on first.
Self care is crucial to my survival and my family’s gears moving.
For us and for those we care for. You need to make a commitment for yourself so you can make the most of you and your caregiver self. It takes intention, creativity, and setting priorities. It’s not impossible.
Care for your body. The physical toll affects more than the physical self. Sleep is priority one. Best case is sleeping a good eight hours or more as needed. If that doesn’t happen, naps. They are not just for preschoolers. Sleep deprivation infiltrates EVERYTHING- from how your body functions to brain functions. EVERYTHING. You need as much sleep as you can get. It may mean no’s to extra activity, committing to a set routine, back ground noises, and more.
What you eat is priority. Low fat and sugar, high protein and veggies. Unhealthy fats and unhealthy sugars negatively impact your ability to function- body and mind. There are good fats that are imperative like avocados, coconut oil, olive oil, eggs, etc. Those in appropriate amount give your body and brain the boost it needs. You need the right sugar from complex grains. Quick energy. A small cup of coffee is life changing. Add that too. Sleep and good nutrition is better for your overall health and will be a major contributor to your success as a caregiver.
…Your mind. Sanity may be in short supply or non existent some days. Or all days. We need to be intentional in care for our minds as equally as we are with our bodies. In pouring to your physical body enhances your mental health. It affects our decision making, emotions, and stamina. Your mind is immensely powerful. When not cared for, it can be your enemy. Your pact to your mind is to declutter it. Meditation, prayer, coloring, journaling, support group or friend. You need at least one of these things. I use all of them! We need some where to exhale our love, frustration, exhaustion, victories, and so forth. We need a safe place to inhale grace, comfort, strength, and pebbles of sanity. Release and renew your brain. Part of this pact is acknowledging and setting limitations. We are humans. Super humans, yet very human. We have limitations. A rubber band can only go so far. It does snap. Ask my family when my rubber band snapped. And who did it. Know and advocate your limitations.
Honor your spirit or soul. Whichever you choose. We are designed to be connected and caregiving has a way to isolate us. We must be intentional to connect for our health and caregiving. Seek and accept help then take opportunities outside of your caregiving space to connect with community(ies). Share the burden. When you are isolated your head has a way of getting stuck. It takes effort and strength to get out and connect. Gives you perspective. It is possible to do something. Especially if you are accepting help. We must connect ourselves to other selves. The more you connect, the more support you find and discover value in your unique purpose.
Set a self care intention. A few minutes a day on prayer and meditation is often what I have and I take it. Grooming is efficient but a necessary part of my morning to tell my brain and body I matter. I choose my food carefully most days. I am active within my limitations. In all my self care, I am working on grace the most. That’s the hardest. When things like today hit, I feel so small and never enough. Am I giving enough? What could I do better? Feel me? Inhale. Exhale. I need to allow grace and affirm I am doing everything within my means.
Acknowledge your fear. Find grace. Affirm yourself.
Namaste and celebrate self care everyday
Here me now- I am not claiming total head monkey control. However, there are ways to quite them and get them mananged. This has been HUGE for my daughter and I. We have monkey riots in our heads often and they just needed to settle the hell down.
When the head monkeys are out of control they need to be fed.
First in a head monkey’s diet is sleep. Lack of sleep makes them louder or controlling them harder. I am not sure which. Either sucks. Set a iron clad routine. For adults, around 10 P.M. and up around 6 P.M. following the rhythm of nature. If that time frame not possible, seven to eight hours where you are able. Uninterrupted. My kids and I are still in negotiations on that part. Settle into a non engaging activity thirty minutes before bed time. I absolutely CANNOT read before bed. Book are engaging and insomnia inducing for me. My daughter it’s the opposite effect. As a matter of fact it can put her to sleep in the middle of the day, so she claims. Find a relaxing activity you can walk way from. Listen to your body. I have been sleeping in an extra when possible due to my iron deficiency and children. I need the extra sleep. I am not against sleep aids and if you need them use them with care.
Head monkeys love food. What you feed them either fuels crazy or appeases them. Avoid high fats, sugar, dyes, chemical/processed foods. It reeks havoc on your nervous system and incites head monkey riots. Caffeine needs to be on a short lease. There are some studies showing restrained amounts of coffee in the A.M. help rev those brain engines, possibly- POSSIBLY- helping those with ADHD. It’s not conclusive. However, in small amounts I find it helps. The best thing you can feed yourself is water. HYDRATE. Don’t give them a fighting chance. Head Monkey grub should rely on protein and not just meat protein. Even good-for-you lean meat protein in high amounts taxes your kidneys. Nuts, beans, lentils should be mingling with your chicken, turkey, and lean beef. Frequently. YOU NEED CARBS. Actually, the head monkeys do. But carb responsibly. Whole grains like wheat, oats, amaranth, brown rice, quinoa, barley are the bread/pasta ingredients to look for. Avoid processed, refine, and white flour. Especially bleached. Saying “bleached flour” out loud just literally tasted nasty. Bleached?! Whole fruits and veggies are smart carbs. Eat them. In abundance. Then watch those head monkeys quiet down.
What you eat is as important as how and when. Breakfast needs to be a protein punch and the afternoon follows suit. Afternoon is when you start to drop in your energy rhythm and wish for those kindergarten naps. Eat a light protein snack. Small meals space about two to three hours apart regulate your blood sugar, showing those head monkeys who’s boss. Drink water all in between.
You may want to consider supplements depending on your head monkey issues. LISTEN CAREFULLY KIDS AND HEAD MONKEYS. Supplements are not for all ages and can negatively interact with other medications. Check and double check, professionally consult. Vitamin Bs (“S”-plural) in a multivitamin for kids, multi or just B complex form for adults is great. The Bs work the nerve system with magnesium, its a head monkey massage. Iron in a multi supplement form (unless prescribed different by doctor) is another way to aid your nervous system and brain. Iron can be a poison in high doses. Thus, unless a higher dose like moi is prescribed and monitored by a professional, stick with a multivitamin with iron. Omegas are for all ages, stages, and reasons. We are plant based omega takers but cold fish omegas are VERY helpful in head noise reduction. If you deal with anxiety, depression, focus issues, etc safely used and effective supplement can help your extra head monkeys. Even if you take medication.
Now that the head monkeys are rested and fed. Give them a run. You need to get active- daily and through out the day. Simple stretches, standing up and down a few times when you have desk duty makes a difference. Commit to getting that heart pumping. It doesn’t matter how you do it, just do. Then get hands on. Head monkeys like creativity. Everyone is creative and not everyone is a Picasso. Coloring books are just as effective as a Pollock inspired endeavor. Cooking is creative. Yay food! Working on cars. LEGOS! Just be open and get something in your hands. If the monkeys are especially loud then meditate while hands on- shameless previous post plug on meditation . It’s all about being intentional to help you focus on what you are creating for animal head control.
As of now my head monkeys are on a leash. While I embrace their quirks and noise at times, the clock is ticking so I am going to go cook something.
My head monkeys namaste your head monkeys. Find mental peace friends.
I love Understood.org and this link Takes focus to another level. Executive functioning is dysfunctional in our house. While I love our quirks, it can be a challenge. I couldn’t resist sharing these quick tips that help bring things back into focus. Whether you have an executive function disorder or any other reason to have difficulty focusing, this is for you.
Namaste and Love colors
This is where is our story didn’t begin. This is where I realized that after years of teaching with special needs, years of advocacy with other families, and years advocating for myself and daughter it was time to be vocal. This is part of our story and there is more to come. My hope is that you will share your story too.
*orginally posted January 10, 2017
It’s been so cozy in our glittery wonderland of bubbles and glitzy paper; however, the holiday tilt a whirl has abruptly told us to get the hell off. The ton of brick of sorrow and fury hit full force today. It’s not a new or sudden burden, but a reality being acknowledged and denied all the same. For years, I’ve been told “she’s okay,” “there’s nothing wrong,” “we don’t see anything.” My daughter is the ghost child. You see the specter but right through her because you don’t see.
While my daughter is “okay” she’s not “okay.” This morning’s event has continued months of agonizing, acceptance, determination, reflection, and writing. In reflection, I keep going back to her preschool years when I literally thought I was going to lose my mind. Literally everyone indicated that there wasn’t anything wrong. It kept nagging as we stumbled through doctor visits, late nights, and uncertainty. Confirmation was something as a parent I needed and few offered their compassion. Most dismissed us. As it turns out she did and does have hearing loss. When those tubes fall out for the third time, we will be vigilant and awaiting our battle. I’m tired of being dismissed. I’m not the only parent who has experience this or feels this way. I hear you. Your anguish. Your need to be heard. Your unique dynamics in need of being understood.
In truth, to those who dismissed our cry, I’m angry with you for being so ignorant and uncompassionate. I’m livid at myself for my lack of self value to better advocate for her. Those bricks hurt like hell as I watched my daughter shut down in testing today, near tears, just so we confirm what we already know. It seems like torture for her to go through this. She has been coping but those threads are unraveling. We shouldn’t need confirmation; we need solution. We see all of her. Her uniqueness, talents, struggles, temperament, and yes, her disability. We won’t let our ghost child come undone just so you can “see it.”
It hurts to watch her struggle and dread basic tasks. It hurts to lose our cool when we don’t understand why she can’t be like our other kids. The guilt on days that we can barely handle it. It hurts to know something isn’t right and feel like we need to be committed to a psych ward because no one else sees it. While we are still in the phases of testing and evaluations, the instinct is stronger than ever. Our creative and insightful ghost needs more to be better understood. She needs more of me and she needs more of you.
Stop dismissing the ghost children.