Want to know what it looks like to love an emotionally disturbed child. Here is your invitation to glimpse a small window of time in the life of a home with special needs children. Keep in mind that I am so grateful that out of four diagnosed children (even though they are in denial) we are able to contain the mess, the chaos, to one of them going "off the reservation" at a time, but none the less someone seemingly is always off. There may be one major issue a day, or ten small ones but daily we deal with struggles that others just can't relate too.
As I sit in the relative quiet of my house I think back over the last few weeks, months and can't really find a space in time in my mind where all was well, with all the dwarfs, all at the same time. We are not talking simple issues like ADHD or punky disrespect of elders. No, this is more than a hormonal induced snarky retort, the typical eye rolling and loud huffing that accompanies children from age 12 - adult.( But we do have plenty of those attitudes in our home as well... ) No more behaviors so extreme that you can not believe that this is your life, and you wonder in the midst of the situation if there are others out there that live like you do? On pins and needles, not knowing if this is the day that your child will respond appropriately to a directive, or if they will go off the deep end and throw your house into chaos. Irrational complex behaviors that would scare sensible people.
I used to be a sensible person. At least I think that I remember that I was sensible. Now after years of fighting and struggling, I am beginning to wonder if I may be the one with the loose screw. Perhaps my expectations are too high. Take oral hygiene for example, we desire them to brush twice a day. I will accept once if it is done exceptionally well, but for some of them three or four days can go by without a good or even an attempted brushing, and unlike when they were small and I could bribe them, or do it for them, if they are not going to do it now, my recourse is limited to natural consequences. So at this writing I have one dwarf awaiting a cap in pain, and another that has spent their summer enduring root canals, and extractions and receiving 9 fillings.
For days ( I mean like weeks) Bashful has had a problem with respecting and obeying me. Sadly, I am almost at a place where I am unable to "handle" him physically. So he "gets away" with a lot, at least in his mind. There is nothing that I can say to him, that he does not fight me on or mouth me about. If I said the sky was blue, he would say green. I told him a television show he had turned on was not appropriate it was TV14 (he is 13), which lead to a fight about how there is nothing for him to watch on TV they do not make shows for people his age. Hum, the Disney Channel, or I don't know how about the Food Network, or the Fishing Channel, heaven forbid read a book for entertainment...I digress.
There is not a solid grasp on reality in their lives either. For example today, when I tried to share with him the reason that his behaviors have been escalating, is because he has not been taking his medication properly, he tells me that he is and does take them every day. Upon examination of the the prescription for the controlled substance, that is suppose to expire tomorrow (meaning there would be one pill left) I find there are 15 pills left. Instead of accepting the facts, he runs his mouth about how I am trying to trick him, and how I am always bossing him and telling him what to do. The clear thought never enters his mind that if there are 15 pills left, and by law the pharmacy can only give 30 at a time... well I wait for the ah ha moment that never happens.... I envision it as something similar to this: "Opps mom, maybe I have not been taking my meds like I thought". The truth is that since he does not want to take medication, he pretends every day to take them, (is not smart enough to actually remove them from the container and dispose of them) going through the motions of shaking to container and slamming the cupboard door to make us think he has taken them. Creating his reality based on his efforts of deception.
Here is your glimpse into the chaos that erupted the other night without warning and a bit of the back story:
The Prince tries at every turn to teach the boys the art of respect for others, of caring for your family, holding your sisters and mother in high regard, for obedience in all things. We believe in doing so we are laying the ground work for years of successful relationships in their personal life and in their professional lives.
So after the kids got home from church, the Prince goes to talk to Bashful about his disrespect of me that day. It is apparent that Bashful, in his own mind, believes that he had gotten away with the acts of disobedience and disrespect since it was well after 8PM and he had not been confronted. Hence where consistency comes into play as he expects the "hammer to drop" every evening after the Prince gets home from work or after dinner. But consistency is only one way in Bashful's mind. In sticking with the consistency theme, not once has the Prince caught wind of disrespect even in the smallest form, and not addressed it, with any of the dwarfs, male or female, so today when he hears the list of infractions, it should be known to Bashful that he will be seeing the Prince tonight and hearing from him regarding his willful lapses in obedience. Bashful is surprised and perhaps confused (being confronted so late in the evening) thinking that he has gotten away with his poor behavior; and in his mind has turned things around for the day, we find his response tonight is one of fight and flight not acceptance or humility.
Bashful immediately begins his fight mode verbally combating the Prince with his version of the story (which for the record never flies). Then he amps his behavior with thrashing and yelling and cursing (he could make a sailor blush). He flies out of house through the garage, grabs his bike, in his bare feet shorts and a tee, flipping us the bird and screaming obscenities at us at the top of his lungs, rides off down the road. Eventually he starts looking back at the house, and within minutes is back in the driveway. Now he is storming the front door, flings it open and demands money. (I would think that he came back to demand shoes, but I am after all the village idot, what do I know?)
As a side note, over the years when our dwarfs threaten to run away, we have offered them time to pack their suitcase, and a bit of cash for road. It used to be $5 but with inflation we have raised it to $20. So when the the Prince gets to the door to discuss the small one's demands, he calmly reminds Bashful that the dollar amount given to any kingdom run a-way is indeed $20, he however owes his mother $35. So sorry no funding for you. The Prince shuts the door. Now Bashful is not going to be deterred. Additionally, his foul language is over the top. I have a moment where I wonder what the neighbors are thinking. I briefly thought about the muscles in his hand hurting along with the muscles in his forearm, from the force of which he is using as he flipped us the bird, so high, so often and so long for such a short period of time. But again, a rabbit trail, but really these are thoughts that scamper in your brain in these moments of time.
Now the screeching, screaming, possessed young dwarf is attempting to barge in to the rear of our home as he is determined to secure his &^%#@ funding for his road trip. Still no consideration that even if we gave him money, he could not enter a store, a restaurant, or a gas station to use the funds to purchase anything in his bare feet ! I have been an observer until this time. But I indicate to the Prince that I will go out and attempt to talk and reason with Bashful. By now about 9 -12 minutes of his ranting has transpired. I walk out to the lanai, and am greeted with what appears to be a raging lunatic. Rapid flapping arm movements, darting eyes, agitated responses screamed at the top of his lungs, laced together with profanities. Eyes that are not seeing anything around him, Ears that really are not hearing any words that are being said, so angry and so over come by his anger that he is unable to even concentrate or be coherent in his rantings for his money or anything else, so he just takes to cursing and pacing, leaving the enclosed patio and stalking around the yard yelling, ranting and raging.
Blind rage is a thing. I saw it. It is scary. I would guess he never even knew I was on the back porch desiring to talk to him.
Now somewhere in the midst of this tirade we are also "playing normal" with the family that is inside the house. The siblings of the dwarf going off the reservation are also special, and are freaking out. How do I know this, because they are stalking, rubber necking, greedily attempting to secure the Prince or I in conversations that they would think are normal (yet they rarely attempt normal conversations with us for any reason, and rarely seek them out with us) When we try to disban them, tell them to go watch tv or get a shower, they lurk not in their rooms or in their usual spots for such activities, they take seats in the main part of the house, closest to doors and windows so that they can continue to "nonchalantly" observe what their train wreck of a brother is doing. At some point in this process I determine that there is one neighbor that Bashful would potentially go to as he is running away barefoot, so I go out the front while he is in the back and I walk over to let them know what is happening and request that if Bashful would come their way, to just ignore him, call us if they need to.
Now I am guessing that about 15-17 minutes of time have transpired since the onset of the Prince and Bashful's original conversation. At points it has felt like an eternity, At points it seems like a blink. During all of this time there is no normal, no balance. Thoughts race through your head as a care giver, about how to interrupt the next tirade, trying to guess where or what the dwarf will do next, mentally assessing calling the authorities, attempting to force him into a car for removal to the hospital, just grabbing him and restraining him on the ground. I return home after my brief jaunt to the neighbors to find the dwarf's still elevated voice in the area of the rear of the house. I walk around and enter the pool area and see that the surrounding misc pool deck items, 6 pool blankets and 17 pool towels have all gone for a swim. As has Bashful, as he is still yelling and cursing at the Prince who is standing on the side of the pool.
I believe at this point the Prince is trying to determine if he should jump in or stay on the side as now he is desiring Bashful to empty all the items he threw into the pool, to the side of the patio. As I enter the lanai, I see Bashful gathering up the soaked soggy items from the pool bottom and am watching him tossing them with anger at the Prince. I go sit on the side of the pool with my feet in and attempt to talk to the dwarf. I feel myself getting angry (and it happened quickly, less than 20 seconds) because of all the work that this dwarf is creating for me, laundry (He wont be wringing out or washing or drying these items that he tossed in the pool ) and how dare he, continuing in his anger throw things at my husband, the Prince, who busts his butt day in and day out for this family.... (see what I mean, even the most sensible person becomes irrational in thought at times like this).
I jump in the pool and I am sure, to the dwarf, I now am the one that looks possessed. I grab his hand with the towel he is about to throw in anger at the Prince, and yell at him to stop and back away from the mess. I begin to dig out the towels and lay them on the side of the pool. The Prince tells me to grab Bashful and walk him to the stairs. I am thinking in my mind, "Are you kidding me, if I grab him, in this pool where he can't touch I am going to hold him under... that should cool him off." However I grab his arm, and to my surprise he doesn't attempt to strike me and walk him to the pool stairs. The Prince takes the soaking wet boy out of the pool, leads him out of the lanai, to the side yard, soaked to the skin, still with no shoes and places him on his bike and tells him to leave. He is now screaming that he just wants the Prince to call the cops. The Prince replies that there is no reason for him to call the police, as the police will find him. Bashful, the head to toe, wet boy, with no shoes with a deranged attitude and appearance, ranting and riding in circles on his bike in no time flat will certainly call some attention to himself should he choose to actually ride off in the sunset.
His brothers and I wring out all the towels, throw them in the bin also rescued from the pool and the boys drag the seemingly 100 lb bucket to the laundry room, where I begin the process of washing and drying these items three or four at a time. After starting the first load, I am not sure what it going on with Bashful, I can still hear raging loud voices out front. I wrap up in a dry BATH towel and head out to the front door. I think this is when I really loose my mind. In his continued rage, Bashful has not only tipped over my bird bath, but has knocked all the plants and planters off the front porch that just that afternoon, had spent significant time on rearranging, watering, weeding, pruning, and restoring to health. I find the boy on the ground with the Prince crouched in front of him attempting to talk to him. If the Prince knew of the destruction of the items on the front porch or not I can't be sure. Still is raging, is the dwarf. My next words are not ones that I am proud of. And admittedly I knew that these would be the most hurtful things I could say to Bashful, but at this point I was no longer caring about hurting his feelings (right, we are all selfish), don't judge me til you walk in my shoes. After a few ranting words about his ignorance and how he trashed all my things and made all this work for me, and knowing that Bashful struggles with abandonment issues, knowing that he freaks out in other ways when he can't find us, or thinks that we are leaving him for any reason... I walked over (and what a mess I was) soaked head to toe, with a bath towel wrapped around my clothing, wet hair dripping and said; "Bashful, since it is so hard for you to live with me and respect me, I will be the one to leave so you do not have to."
I headed into the house, picked up my wallet, and my car keys. The Prince in the meantime did force the dwarf to his feet, and insist that he begin cleaning the messes up. At which time the Prince also borrowed my cell to place a call to 911 as now 30 + minutes into this Bashful is still not calming down. To his credit he has begun following the Prince's instructions, but is till angry. I waited a few seconds until the Prince was done using my phone to "call" 911, and I began walking to my car to leave. (Now the sick twisted part about this is that I was only going to pick up another dwarf at an after church activity) so my play on his insecurities was purely selfish on my part. But as I stated earlier, I am starting to also question my own sensibilities.
As I drove away leaving the dwarf less of a mess, in the capable hands of the Prince, as he began to descend from his rage, and focus on the threat of the 911 call, and my abandoning him. I am sure I do not have to point out the irony in that last part of the statement. He hates to respect and obey me, but freaks out if he thinks I am leaving him. As I am leaving, the neighborhood, I take notice to a group of neighbors (about 6) standing trying to cover their gawking by "walking" their dogs... I am struck by the fact that this is my normal.
It is no wonder that people are hesitant to adopt. It is no wonder that families with biological children with these issues feel lonely, isolated and disconnected. Aside from the Lord, the only way that I can survive this is knowing that not one of them has my genetics, not one of them has my DNA, I did not create this brokenness. That thought however, leaves me heartbroken for the families of the children where these issues are biological and generational.
My normal is chaos. My normal is the unknown. You do not know which dwarf it will be, or what the tipping point will be. These situations can happen in an instant. There is no warning, there is no preparation for it. You become a hostage to the situation, for the span of 3 minutes or three hours.
You can't get back any of that time. Bitterness barks at your feet as you "fix" all the damage done to the physical items in your home. Sadness lays on your heart as you recognize, but can't fix the damage that the other children in your home suffer from as witnesses. You often cry because in your exhaustion, and frustration over the most recent issue, you inappropriately deal with another situation through that lens. You become harsh, critical of others, you are often alone. As you recognize the signs of stress in your other family members lives during your attempts to neutralize the aftermath you question what is the plan in all this. Anger flares in your mind as outsiders assume that this is an isolated incident, or that some how your poor parenting skills, or lack of communication skills have gotten you to this place. No child would act this way unprovoked. You bite back retorts because, you don't want to paint your child as the monster that he or she really is. Society, is harsh and uneducated and unforgiving. No one understands that these broken humans, play nice in society. They can and do often hold it together everywhere but home. While there are beginning to be issues at school and in the community, they are still perceived by others as "normal" teens exhibiting "normal" teen behaviors and attitudes.
I know that our home is not alone in this struggle. Special needs parenting goes on all over the world, in homes close to you. I venture to say behind closed doors. I suppose that the point in being transparent in regards to latest struggle is to ask each of you who are reading this to pray for parents everywhere. Pray for your family members raising kids, for your neighbors, for your friends. Wisdom, strength, direction for the easy fixes and the more challenging ones. Praise God if you are fortunate enough to really just deal with "normal" age appropriate challenges.
If you are a family in the fire of parenting special needs kids, share your story, be transparent. Only through this will others gain knowledge and insight to the truth and in many cases the severity of the situation. In your transparency you will find encouragement and a network. Do not let your pride over ride you. No one should journey this alone.
Offer aide. It may not be much, but at the least be a friend. Listen. Offer to stop by for coffee. Offer to bring coffee. Most times these kids will not behave this way for others, so offer to take a child for ice cream, or to a movie, to the park. In doing so you are providing a small break for a parent to breathe. Pray about what you can do to minister to the parents or to the child. It will become clear how you can assist.
Do not impose your opinions about how to parent. (Trust me on this, if their child is over 5 years of age. they have already tried all means to get them to comply with "normal" behaviors. These kids are broken. They can not or will not do what they need to with consistency and regularity. Remember the medicine example from earlier? For 11 years this dwarf has been on medication and the house rule is when eating breakfast you get and take your meds. Bashful has NEVER in 11 years missed breakfast, but every day, for 11 years, I have to remind him to take his medications.
Don't judge. Until you have walked the path, come along side and witnessed the chaos and aftermath, do not judge. Do not talk to us like we are making this stuff up. Life is exhausting enough to have to try and convince you that we are dealing with a hot mess. Trust us on this, support us and come along side to help find solutions. When you tell us how delightful the child is and how wonderful your interactions with them have been, remember that is the game. They are master manipulators and first class actors and actresses. If they can break up a friendship or destroy a marriage, ruin a reputation, they feel that they have the upper hand and that they win. No one wins, but by the grace of God interceding in their lives hearts and minds. Which gives those parents in the trenches hope, and encourages us for one more day, minute or hour based on the current situation we find ourselves in.
By the way, who has that kind of time, to Make this Stuff UP?