“I don’t know how you do it”
I hear that at least three times a week, conservatively. I have learned that more often than not, when this phrase is uttered it is for one of a few reasons: the person genuinely would like to know how the logistics work, our family life is completely outside their realm of experience/understanding, or our kids have been a complete handful and the person is saying it in exasperation. All reasons I can understand. However, few phrases make me feel more alone. Loneliness is a very common byproduct of special needs parenting. We walk a different path and it is one that can be hard to understand if you have not walked it yourself.
The best way to help answer that question and ease the loneliness is to share some of how we do it and what it looks like. The following is a walk through a day we had this week.
As a side note, I was not even able to finish this blog before some more great examples came up on this subject and I made some videos I shared on my Facebook Page about those experiences.
I open bleary eyes to see Damien, our six year old standing next to the couch I slept on the night before. I can see out the window the sun is not up yet, so it must be early.
“Mommy, I had a bad dream”
This is the reason I have been sleeping on our lumpy, decade old couch right outside his room. Damien has always struggled with sleep and my newest attempt to help him work through it has me sleeping right outside his room so I can quickly and easily help him through his night time struggles. I slowly sit up, as the couch is not back friendly, and talk through his dream with him. He calms down and heads back to bed after some hugs and one of Mommy’s magic kisses that scares away bad dreams. This is the fifth time since I fell asleep around 11pm that one of the kids has needed me. I lay back down and glance at the clock on my phone, it is 4am.
I am just starting to fall back asleep as Caleb starts screaming from his room. As I am getting up he reaches his bedroom door and is yelling “Want out”. Oh boy. Communication is VERY hard for Caleb. If he is yelling what he wants before I can even get to his door than he is not going to have any going back to bed nonsense, he is going to want to get up for the day.
Everyone else is quiet so I let Caleb out of his room, change his diaper, and get him some dry cereal. Caleb is four and has a lot going on to include Autism. He is terrified of the bathroom so potty training is not an option right now, hence the diapers. He also does not like any food that is wet, nor has he figured out spoons so dry cereal is our go to. While he walks around I make myself some coffee and gather clothes for all five kids for the day. While Damien’s sleep issues are a combination of trauma, anxiety, and sensory issues, Caleb’s are a combination of Autism and nerve pain.
Today is our first day of therapy on the new summer schedule and I have a good bit of anxiety about it. It will throw the kids off having a different schedule than they are used too. Not to mention yesterday our oldest daughter, Kaitlyn, left to return to Florida and that always sets the kids off. It triggers their trauma, their emotions run away with themselves and then their sensory issues are triggered and it is off to meltdown city for us. So, while I am gathering clothes I am sure to get clothes that each kid’s (different) sensory needs are compatible with, because I know today is going to be a challenge.
BANG BANG BANG
Well, Oliver is awake. Oliver is our three year old and his bedroom is in the basement. He is very subtle about it when he wakes up and starts kicking his bedroom door as hard as he can. Tyler is still sleeping downstairs so I scoot down there quickly before Oliver wakes him up. Tyler works second shift an hour away so he does not get home until around 1am. I open Oliver’s door to one of my least fun surprises, Oliver is stark naked. He has recently discovered his poop. He loves to take off his diaper and mess with it. So we duct tape his diaper on at night.And some nights even that is not enough. Sigh. I send his naked butt up to the changing table so I can clean up poop.
I did not get enough sleep for this and it is not even 6am.
I hear giggling as I come upstairs so on my way to the changing table and Oliver I tell Damien and Perry, our five year old, they can get up and clean their room before breakfast.
I clean up Oliver, get him dressed and give the big boys their clothes as well. Then I open Alize’s door and she is awake and playing with toys. Alizé is our only girl at home still and she is four years old. I tell her to clean up her room too and I start getting breakfast ready. Oliver is following me around trying to “help” open all the cabinets and the fridge and getting out his flax milk. Oliver has eczema and if he has dairy it gets substantially worse, so flax milk is his go to for cereal in the morning. I give Oliver his tablet to distract him so I can walk around the kitchen a bit easier. It is about this time that I realize Caleb is not anywhere I can see. I go to find him and he is sound asleep in his room, I wish he could have slept in earlier but I am glad he is sleeping more before therapy.
Alize comes downstairs to announce her room is clean and the kids all sit down for breakfast. I walk the kids through the visual schedule for the day to help them prepare for our plans. The more structured the day, the easier it is on them all. The first thing on our schedule is breakfast, followed by time for the kids to do chores. Their chore charts have multiple uses. First it helps them learn independence and life skills. The act of checking off the lists help them feel in control and ease their anxiety. Cleaning is also a great sensory regulator. The kids work through their chores and brushing their teeth, which can be a challenge for kids with sensory issues. Then I send the big boys down to wake up Tyler.
I run downstairs to finish some laundry while Tyler plays with the kids and eventually makes an early lunch so they can eat before therapy. Tyler is able to come help me with the kids at therapy today but has to leave straight from there to head to work so we take two cars. As we are loading the kids up we have struggles with kids who try to wander during the loading process and kids who do not want to get in their seats. Oliver is really sure he should be able to drive.
I get to the therapy offices before Tyler and herd all the kids inside. Today Alize, Perry, and Oliver are supposed to have OT and Speech, and Caleb is supposed to have Speech. It is summer time so the therapy office is a zoo. There are a lot of families that only do therapies in the summer (like us) and it makes the waiting room experience with five kids with sensory issues, anxiety and a history of elopement a challenge. A Mom kindly offers me a seat when I get there, but I cannot sit down. Caleb and Oliver both take off, often in different directions and the office is on a busy street, if they get out the front door (which has happened before) it is not far to the road and traffic and neither one knows not to run in front of cars because their brains do not understand safety things. So, I stand and watch the kids, Damien is really susceptible to peer pressure and if other kids are being destructive or unkind he just jumps on the bandwagon so I am keeping an eye on him playing with a group of other little boys. Figuring out he still has to follow the rules even when others are not is one of the things we are working on in therapy actually. Perry is translating for Alize as another little girl is trying to talk to her but is not able to translate all her Ze-Ze speak (due to her apraxia). I can see both Damien and Perry getting fidgety in the loud and chaotic waiting room and I know this means that their behaviors are going to get more and more out there the more disregulated they get.
Unfortunately, I don’t have wiggle room on the kids therapy schedules. Because so many therapist are involved in all our kids care they all have to coordinate their schedules in a way that works for our schedule (i.e. either when Tyler is home or all at once so I can afford to hire a helper like I have for one of the days). So I am stuck with the therapy schedule that has us in the waiting room during all this chaos.
I am still waiting for Tyler when Oliver makes a break for the water fountain at the back of the building. I do a quick scan, Damien, Perry, and Alize are playing and Caleb is reading the ABC’s off a toy. I have probably 30 seconds to run back (yes literally run like a crazy woman) and grab Oliver before Caleb decides to make another break for the door. I have Oliver in my arms as the OT comes out for Perry. I am trying to update her about Perry when I see Caleb is inches from the front door and I literally run away mid sentence to be sure he does not leave the building. Thankfully, the therapist here have worked with all of my kids and they know the weight I am carrying so they do not bat an eye. I get Caleb back away from the door and Perry goes off to OT. At the same time the Speech therapist sees me wrestling Caleb and let’s me know she is just going to grab Oliver. At this point my anxiety is climbing.
Crowded spaces never used to cause me anxiety, in fact I used to get energy and inspiration from crowds. However, after years of seeing how quickly things can become insane in crowds for the kids has given me something called hypervigilance. Hypervigilance is something you may be most familiar with in people who have PTSD. It is a state of constant awareness and being in a constant state of flight or fight. I am always waiting for the other shoe to drop.
Shooo. My knight in shining armor, otherwise known as Tyler has arrived. Thank goodness. But….wait…..Alize is supposed to be getting OT this hour. Hmmm no one has come to gather her. Tyler is distracting Caleb so I can run up and ask the people at the front desk what is going on. There has been a mix up and Alize won’t be starting OT for a few more weeks. Sigh. OK, not a disaster but I really wish she was started already. No time to even relay the information to Tyler because Caleb is back to attempting an escape.
We get through the first session of therapies and Oliver and Perry go to meet their next therapist and Alize goes back for her Speech. Now it is time for Caleb to go to Speech. Caleb has two speech therapist that work with him because he is just a lot to handle and it is no longer possible for their to be only one therapist, when he does OT I go back and I am the second person. Caleb does not want to go without me today so we try a tactic that has worked before, I walk with them to the therapy room, Caleb and the therapist go in and I keep walking to circle back to the waiting room. Caleb is having a really hard separating today but I know that if I try and stay immediately it will make it harder on him. usually he gets engaged in something fun in the room and gets over being upset I left. Today that is not happening. I hear his screams getting louder and louder. I can hear that they have left the sensory gym and he is in the hallway trying to get back to me. This is the hardest part for me. I know he wants me desperately but I know the therapist are working so hard to help him regulate enough to calmly come out for me. I am pacing by the door to the back waiting for them to come get me, when one of the therapist comes out another door.
“He is ok. I know you can hear him. We have one of the owners helping us get him a bit more regulated and then we will bring him out but I did not want you to worry”
Ha, worrying is all I do basically but it was nice of her to let me know the plan. The therapist have been using the sensory gym for Caleb’s Speech instead of the usual offices they use for Speech because Caleb has gotten to the curious stage we usually associate with around two, and he is more like the size of an eight year old. So he gets in to EVERYTHING. If they stay in the office, every shelf and every bucket is emptied on the floor, which makes accomplishing any therapy a challenge. It usually goes better in the gym.
The screaming has calmed to just crying and then Caleb is walking out with all three therapist. His entire body is blood red, he is crying and sweating and he flings himself into my arms as soon as he sees me. Nestling into my neck and kissing my eyelids he starts to calm down. As he is doing this the owner tells me that the Speech Therapist have asked her to sit in on Caleb’s session today to help them with ideas on how to make therapy not so hard on Caleb. They assure me there are other kids that do this but I have not witnessed it.
Since Tyler is there to watch the other kids I am able to go back with them to try and get some therapy accomplished today. We return to the gym and Caleb is glued to my side. He slowly relaxes and works through some hard things and the owner reminds me that this is his space to be upset and work through the things that are hard for him. Caleb calms down enough to pull away from me and go play/do therapy with his usual two speech therapist while I talk to the owner. She says that she knows Caleb has a lot going on but in our discussions I realize that she only knows about the Autism and the CMT. So, I fill her in on the brain injuries and the prematurity and the suspected drug use during pregnancy and the breathing issues. During the conversation she mentions that Caleb has Apraxia, which is the first I had heard the words, although I am not surprised it is still a blow. It is one more battle our boy has to fight. I am heartbroken that in this space with the experts it is still SO hard for Caleb and I do not know how to make it easier on him and as he gets bigger so do his meltdowns so in many ways it is getting harder not easier. The owner turns to me before we leave and says “With all the things he has going on he is actually doing really well”. I look away and say thank you because I am using all my strength not to burst into tears.
“Oh shoot, what time is it?” I ask the room. I have to go back to Alize’s speech therapy early to help her transition out. She really struggles with transitions and if I do not go back to gather her it sounds like she is undergoing an exorcism. I walk Caleb out to Tyler and he starts to take kids to the van to load them up while I gather our princess. I am late so she is already quite upset. I apologize to the therapist and tell her I was helping Caleb who was having a hard time and she says she assumed. No one is really surprised. I get Alize out to the van and everyone is overwhelmed and exhausted by their therapy experience. I start handing out snacks to try and appease them and this is when Tyler catches the look on my face.
“Caleb is just really having a hard time and I have no idea how to make it easier and neither do the experts really” and now I am crying. Tyler gives me a hug and some encouragement that we will all get through it but he has to head to work now. All I want to do is drive home. Unfortunately, if I turn left out of the parking lot Caleb knows I am heading home and starts to lose it and I cannot take another meltdown today. So I take the long way, and by the long way I mean I turn our five minute trip back to the house into a half an hour to calm Caleb. Thankfully it works, some.
As soon as we get home the kids are all amped up and antsy and everyone is on the edge of a meltdown. I am on the edge of crying. We all need some time to collect ourselves. I get the kids inside and give out tablets and another snack. The kids all gather on the couch and snuggle silently watching their individual tablets, a sure sign they are overwhelmed. I sneak into the kitchen for a quiet cry over all the ways I cannot “fix” things for the kids and I eat chocolate. In the face of giants I cannot slay, chocolate is necessary.
Everyone calms down, including me and I start gathering stuff for baths. A bath with epsom salts has a remarkably calming effect on kiddos with sensory issues and since we have therapy again tomorrow we could use all the relaxation we can get. Thankfully, dinner is leftovers so I do not have a lot of work to do for it. As one can imagine giving five special needs kids, under six a bath by yourself is a lot like getting wet cats to walk in a parade.
We make it through. I heat up goulash for Damien, Perry, and Alize. Unfortunately, Oliver and Caleb won’t eat that so I make some chicken fries for them. Chicken fries are one of the four things Caleb will eat and is the easiest thing to make for Oliver as well.
Due to therapy the kids did not nap so we will be doing bedtime right after dinner. For bedtime Damien and Perry need their handheld night lights to calm their anxiety that peaks at night. I remind them I will be right outside their room on the couch and that they need to try to sleep because we have therapy again the next day. Alize gets a pull up and we have a ten minute conversation of me trying to figure out what movie she would like to watch. Oliver gets his diaper duct taped again, hopefully this time he does not play in his poop and I get him settled in bed. Alize and Oliver are the easiest at bedtime. Caleb getting to bed is a whole situation, he picks a movie and has his tablet playing his music and he gets a cup and he has a ritual we have to follow or he will completely lose it and not sleep. I get him settled and I go back to Damien and Perry’s room. I can hear them being crazy and I know they need more help getting to sleep tonight. We do some neurosensorimotor reflex integration work I have learned from their therapist and I also do some guided breathing with them. I can see their bodies relaxing and I leave them to sleep. As I walk out of their room Caleb is at his door crying. I go back in and start his ritual over. If he has not fallen asleep yet and hears too much noise we have to begin it all again. This is also why we cannot flush our toilet at night. Caleb is terrified of the sound of it flushing and his room is next to the bathroom and if he hears the toilet flush he will be in a full meltdown and sometimes that means he will not be able to sleep that night. Thankfully, tonight he calms back down and I head out to the couch.
I just plop down at first and stare into space processing everything that this day brought. Then I gather myself back up. I reset the visual schedule for tomorrow. I wipe off the chore charts for the next day. I clean up from dinner and start the dishwasher. I gather clothes for the kids for therapy tomorrow. I put the kids to bed early and I know there is little chance of them sleeping in so I need to get myself a shower before I can head to the couch to lay down.
I think Caleb is asleep and I start the shower, he wasn’t. He starts crying instantly. I shut the water off and head back into his room…at some point I will get a shower and then do some research on more ways to help the kids while my hair dries and then maybe a few hours of sleep before we do it all again.