We have been immersed in special needs since the beginning of our parenting career, now 6.5 years ago. Initially, it was difficult, but we acclimated and forged ahead in the spirit of loving our then only daughter because she was our gift. As we were blessed with more children, we never imagined the magnitude of what would transpire as our babies began to systematically regress into the world of Autism. Facing what we do each day now, makes the days surrounding Bella’s new birth, even with her then myriad of health issues, in a word - simple. That says a lot, because really Bella’s birth was anything but pleasant; within the first 3 months, she had been hospitalized nearly a month prior to her open heart surgery for failure to thrive which was secondary to the state of heart failure she was born into. We were on complete quarantine to protect her from dangerous viruses & bacteria. Following heart surgery, failure to thrive, recurring infections, renal complications from surgery, etc were the norm in caring for Bella. Those times seem simple to us now, because now we are caring for 4 children whom have complex health issues with one condition in common—Autism.
This journey has been tumultuous and draining on all fronts: physically, mentally, emotionally, financially and also on our marriage. My husband and I continue to try with every ounce of effort we can summon to provide with all four of our extraordinary children every day. Unfortunately, these past years have taken a direct toll on us individually from a health standpoint and I feel it important to be quite direct about this. It has been humbling and in some ways humiliating, not being able to provide for our own children what they need and deserve due to our own health limitations. My husband’s health is still very affected. We are trying to remain optimistic, but cannot help but be greatly concerned due to familial history of chronic health issues, like ALS and degenerative autoimmune diseases. My health continues to be challenged, even with medication and proactive measures to work toward improvement. To be frank, both my husband and I are full out exhausted individually and this in itself takes a large toll on our marriage.
It breaks my heart to put these words on paper, not because I’m proud, but because I love my kids (and my husband) more than I ever knew was possible and I will go to my grave knowing I’ve done everything possible to help them. I think most Mothers/Wives feel the same; only the gravity of our unique family dynamic is beyond comprehension for most. I can say this confidently, because I still at times have trouble wrapping my mind around all of what has become normal for our family, day in & day out. As I think of what has become normal for us—despite my typical optimistic outlook, I am disheartened. We live a completely isolated life within our own home, just getting by on basic care for our kids & trying to keep them from regressing further. The few relationships we have been able to maintain are in majority by phone and comprised of about 14 people, including: our parents (4), the kids’ educational team (4), (2) primary therapists for our kids, our primary family physician (1), plus (3) friends between the two of us how have remained even though they are long distance. It is beyond sad to me that I spend more time traveling to, from & in the treating physician’s office per month than I do with my husband alone. Furthermore, when my husband and I are together there is never a time we are not stressed about logistics of how to make our family work or strategizing how we will avoid marital failure, mental breakdowns, health disasters, or the simplest of details in life that are overlooked by most. We do not want this isolation or choose it out of preference; even when we plan to do things we know our family may enjoy, someone gets sick, or one/some of the children are otherwise unfit to participate, etc, etc. Yet again, 4 children in 4 years, all with Autism about sums it up.
We are now full speed ahead on proactively treating the accompanying health issues each child has and doing everything we can to learn about this aspect & how we can improve the children’s health alone, which should translate into a better quality of life for them. The irony is that in the mean time, my husband and I do not have a life. Certainly one that isn’t what we think is even close to sustainable long-term, as is. We are trying to gradually engage the children in all recommended therapies, but are simply unable due to the necessity of manpower, supervision & a depleted budget to hire helpers to carry out prescribed therapy interventions. I do not mean to be anything but honest here. We simply cannot sustain this current state of life we lead together. Forgive me, I have lost all ability to be anything but brutally honest.
Each child has a unique and complex set of medical needs; many of their symptoms are common & there is a clear pattern of autoimmune affect in each of their cases. The following are just a few specifics: Bella has been diagnosed with Hashimoto’s autoimmune disease. Roo’s renal problems are back in full force (regression in toileting abilities). S-bear and SJ have both been under treatment for recurrent bacterial & parasitic infections.
I spoke recently to a group of service providers at state Respite Coalition event briefly, while my husband came home to care for our children (because there is no one else). It was there, I told that group of providers, “I’m thankful each day to God that I’m married. I’m thankful each day He gives us another chance.” I said that because I know intimately the chances that my marriage may fail are a near certainty under these conditions, despite loving my husband greatly and our mutual commitment to one another. Going along with this, I live with constant fear of what will happen next or how I may fail: my children, my husband, myself. How will I protect them from abuse and neglect? How will I lead them by my positive example, when I am feeling so desolate myself?? – these and the worries of everyday life business literally keeps me awake at night.
Just last evening following nightly bathes the unspeakable happened. I was at home with the kids myself & while I was preoccupied with cleaning up after another child’s toileting accident, my 4-year old son outsmarted our secured double bolted exterior doors. In a matter of a couple minutes while I went up & down flights of stairs myself, he pulled a kitchen stool to the door to reach & unlock the high level lock exiting to the garage, somehow he got the truck door open & pushed the garage door remote inside the car. With the normal background noise in the house and my focus diverted, I didn’t hear the garage door go up. S-bear exited our home through the garage door. After immediately noticing him gone from the family room, I quickly searched the house to the normal areas where he’d likely be. He was no where & both the front & back doors were secured, so I ran to the third exit going to the garage. It was open, the car door & the garage door open as well—there was Bella standing on the steps in the garage. My heart literally leapt into my throat it was pounding so hard. I hastily deposited Bella back to the family room sofa with Roo & SJ. I tore back out onto the front lawn to look for S-bear; there was no one in sight down our entire street. I heard kids playing behind us at the main park & ran there praying he’d be there, too. I had to leave the other 3 kids in the house while I sprinted across the block to the park. S-bear wasn’t there & my screams of his name were unanswered. I yelled to an adult man adjacent to the park, in his back yard, asking him if he saw a little boy in an orange shirt. He hadn’t so I quickly told him our address & that he had Autism if he’d see him to please help bring him back. I ran so hard back to the house, asking God that he please have gone back in the garage. S-bear wasn’t there & I still didn’t see him as I looked all directions swiftly. I checked on the girls in the house again quickly, then I ran back out the garage scanning for anything that may lure him any certain direction. I was on the curb in front of our house & a neighbor came out her house yelling to me. She asked was I missing a little boy & I screamed “YES!” “He’s back behind our house at the lake” she hollered to me. By God’s grace she’d spotted him & told some other kids to go to him while trying to figure out where he belonged. He was barefoot, fresh out of bath in pull-up night-time diaper and pajamas. When I spotted him from the edge of the neighbor’s lawn & yelled out his name, he looked at me & then said “ducks” & put his feet to the water’s edge. He cannot swim I thought running toward him. Another adult came out, grabbed him & I yelled to her that he is my son, as I ran around the lake to them. When I got to him & scooped him up, she said, “We kept talking to him, but he wouldn’t respond. He wouldn’t tell us his name.” Through my tears I told her he had Autism, thanked her briskly explaining I had three unattended girls at home. S-bear remained fixated on the water, ducks & unaffected by my sobs as I ran carrying him home. My stomach has been in knots, my mind racing ever since. I lay awake last night going over the things that COULD HAVE happened & how could I prevent this from EVER happening again. He & his sisters are so innocent, yet brave to their detriment, gullible and easy targets in an unfair world. Even if this had been Roo (very high functioning – Asperger’s), she would be easily been coerced by a stranger, because she interprets things literally and doesn’t comprehend what it means to lie or that others are capable of harm when presenting themselves with a friendly nature. I share all of this with you, because this is our reality. This is our family in it’s most vulnerable place.
Even when things are in a rhythm, I spend my life as a parent, much like a wild-fire firefighter; I put one fire out & another erupts, and so on and so on. This marathon we’re running does not work in favor of my own mental health, my husband’s health, my patience, nor, my ability to care for the children, and the marriage, God has entrusted to us. I pray daily for my own strength, the strength of my husband, for my mental fortitude, for forgiveness of my shortcomings, and mostly for hearing what it is I am to do to provide for our family. It takes a village to raise a child, I’ve been told this on many occasions— well, I’m praying for that village daily. I know we will find it, as we always do-- just on God's timeline & delivery in the unanticipated.