Parents with special needs children run the risk of burnout, which really isn’t an option. To reduce your risk of burnout you must expand your support system. Here are a few tips.
When friends and family offer to help, accept. This is easier said than done as you may not want to burden anyone else and may feel that it’s your job as a parent to figure things out yourself. Set pride aside and know that your nearest and dearest are sincere. Everyone can help in some way, not just when it comes to childcare. Let your loved ones help cook, clean, run errands, babysit some or all of your kids, give you a break for a couple of hours, do yard work, and more.
Invest In Respite Care
There are many ways in which respite care can be part of the equation, either daily or as-needed. First and foremost, reach out to your healthcare provider to determine if you qualify for home health care. Even a few hours a week can have a huge impact on your quality of life. If it’s in your budget hire an ongoing or as-needed nurse, caregiver, housekeeper, or errand runner. Also, see what non-profits provide volunteers for any variety of services that may lighten your load.
Join A Support Group
Support groups such as Special Needs Siblings provide you with the chance to share your stories, ask for and share advice, vent, and celebrate. The photos and stories you share help other families know that they are not alone. In addition to your online support groups look for live support groups that you or you and the entire family can join. There is no one who understands your highs and lows like someone who is in the exact same situation.
It might feel like it sometimes, but you are not alone!
My, oh, my has it been a while since I have sat and shared my thoughts with you all. Please, forgive me because I will be sharing quite a few entries over the next few days. These are all vulnerable moments that I have jotted in my journal, but now have the courage to share with you.
Boy has this month been a rollercoaster of emotion for me. It started with Christian recovering from a tonsillectomy and adenoidectomy. This was supposed to be a simple outpatient procedure, but it was anything but. I had to take off a week of work just in case of complications… ‘in case’…. that was just the case. Christian had a successful surgery. It was the recovery that caused the concerns and scares. Now, Christian has seizures on a daily basis. He suffers from a both generalized and focal seizures: atonic, absence, myoclonic, focal and tonic-clonic. These all went into overdrive after his surgery. He was admitted into the hospital and there we were. Grateful, I packed a ‘just in case’ bag for an overnight stay.
I was alone with him the majority of the time. Both sets of grandparents, and his auntie came to visit for which I was grateful. Outside I was trying to remain strong but inside I was breaking. I barely slept because even as he slept I stayed awake watching him. I tried to make sure he was not seizing ‘too’ much. I tried to prevent him from pulling out his IV, although I failed numerous times as he kept yanking it out seemingly as soon as I dozed off… I would hear emergency beeping followed by a couple of nurses racing into the room. I would wake up and everyone was frantically trying to help him. There he was . He was sitting on the bed, in a daze, and covered in blood. I was thinking… ‘shoot, I failed again.’ Repeat. Repeat. Repeat. Multiple days. Multiple doctors. Multiple reinserts. Multiple medication adjustments. Multiple opinions. Pure exhaustion.
After three days and variety of medication changes we were permitted to return home with orders to remain home and recovering for 10 additional days. I was relieved to be going home. I had not seen my other children in four days and I missed them. I do believe Christian was relieved as well. there is a certain comfort about being home… in your own space… to recover. He had his tablet and I had my orders. Give him medication. Make sure he rests aduquestly. Document seizure activity. See his neurologist within a week.
Needless, to say I got it done. Although, he had trouble eating, sleeping and seizures were all out of whack. We survived… Or so I thought. Seeing him in this state did a number to my heart. Balancing motherhood with his siblings really put a strain on every ‘end of year’ activity I was accustomed to being apart of. This was the first year I missed my Caleb and Jada’s field day and end of year party. Now, this may seem small to some, but this was a huge blow for me. Attempting to explain to the siblings that mommy could not come because Christian was not feeling well enough to attend with me brought this look of sadness over them. Yet, they told me… it’s okay mom I know Christian needs you.
Why did those words sting like a dull dagger to my chest? Why did I feel like I failed them in those moments? Why couldn’t I just drag Christian out of bed after a seizure and bring him with me? Why couldn’t I just purchase a wheelchair, or stroller for him that way I could simply roll him out with me? So many questions… so little answers. I just made sure I got them a special lunch to take to school… I bought them a hat and a bag. I made certain to skip riding the bus and dropped them off at school instead. I took pictures of them before heading into school that morning, and I said a quick prayer that I hoped they understood.
I tried my best to be all things to all my children, and sometimes that is all we can do. Nothing went according to plan those 2 weeks. Not one thing, but we managed. As mothers I believe that is all we can really do. Manage and accept the things we have no control over.
Until next time.
In these 6 minutes you will witness a raw and unedited account of Christian before and after a seizure. He and I embarked on a new journey. I set out to capture a few minutes at the end in order for me to set baseline.
Recently, he has been showing interest in writing so I wanted to teach him. We are starting with the letter “A”. Never thought I would capture a seizure in the same sitting.
History: Chris is almost 13. He has autism and epilepsy. He is on daily medication but still experiences seizures on a daily basis. This breaks my heart, but it is simply the reality of our last 10 years. I had no idea he would seize while filming this… but I am grateful we were able to capture the moment. Being able to capture this daily occurrence will help his doctors in assisting him. This also brings transparency to our household… to loved ones.. strangers on our journey. Not everyone knows that there are multiple types of seizures.
Not everyone understands the toll it takes on the brain for those who experience a seizure. Not everyone gets why he drops in the middle of the store only to get back up and walk. Not everyone will even care. But to those who do… to those who would like to share the ups and downs with us…
We look forward to hearing from you.
Until next time,