On Friday our daughter was supposed to have a sleep-deprived EEG to see if she has epilepsy. It appears likely that she is having absence seizures, so the doctors ordered the test to confirm (and hopefully rule them out!). After driving 2 1/2 hours to the city where the test was to be held was, after going through the sleep-deprivation process, in the end, we couldn’t complete the EEG. Our daughter, at not quite three, just would not cooperate. We tried everything to help her, to soothe her, to distract her, we tried to get her to fall asleep – but there was no way they were putting those electrodes on her. We were sent home with instructions to call her doctor on Monday and have him order a sedated EEG.
We left the hospital and my husband held me in his arms in the parking lot, while I let out a few tears of frustration. Later on, as he was talking to a family member he made mention of how I had been upset – and their reaction was, “Why would she be upset?”
Why, indeed. My first response when I heard that was almost akin to anger – why wouldn’t I be upset?! But I realized almost immediately that there was no way that person could understand why I would be upset, because they have blessedly never had to deal with a child who’s had medical needs or special needs. They’ve never had to experience the stress a parent goes through when they have to juggle doctors, appointments and procedures. They’ve never had to see their child cry as soon as they walk into a hospital, scared that it’s going to hurt – because that’s what they know. They’ve never lived a week in my life.
So I was prompted to write this, to share what a week in the life of a special needs parent can be like. Now, my disclosure is this: my children’s needs are so very mild compared to what so many other parents go through, and we are so truly blessed for this. Also keep in mind, that not every week is like this in our life, this was a bad week – but sadly, for many families, my bad week is a normal week for them.
Imagine this week:
Monday: after our daughter’s pediatrician forgot to send the referral for her EEG (I had to call twice on it), six weeks later (six weeks of watching our daughter have spells that we have no idea if they’re seizures or not) I finally get a call from the hospital. As I heard her say, “Hi, I’m calling from the EEG department,” I immediately assumed they were calling with an appointment. Wrong. Instead they were calling to tell me that they recently lost one of their technicians and that due to my daughter’s young age (and the likelihood of her not cooperating), they are not able to perform the EEG with only one tech. They regret to inform me that they will not be able to book my daughter anytime in the foreseeable future, but they’ll put us on a call list in case anything changes.
This is not acceptable to me. I asked if other hospitals could perform the test and I was informed yes they could if I wanted to call them. So call them I did. I called another regional hospital who after going through everything said they could have our daughter in within two weeks, if I can get the other hospital to send the referral.
I call the other hospital back, and they agree to send on the referral. I then have to call her pediatrician to inform their office of the change. I’ve spent over an hour on the phone while my children argue with each other and vie for my attention.
Tuesday: our daughter has her therapy evaluation at the hospital. She is to meet with speech, occupational, and physical therapists, as well as a dietician. As we walk into the hospital my daughter is scared, clinging to me asking, “They not hurt me, Mommy? Not hurt me?” It makes me sad that this tiny girl has been here so many times that she equates it with pain. As we get to the appointment I’m informed that the speech therapist and dietician couldn’t be there today, so they will have to set me up with two more appointments, adding to my to-do list that already includes an upcoming EEG, hearing test, follow up appointment with her doctor and Early Intervention appointments. The meeting goes well, as I spend an hour answering everyone’s questions, trying to remember things that are easily overlooked, but that can be important to professionals. In the meeting I learn that instead of ABA contacting us to set up her therapy, as I had been told would happen, that I was supposed to call them. I’ve wasted six weeks. I also learn that instead of having her OT at the hospital (as I had been told would happen), ABA will also take care of her therapy in the home (a plus!), but that to expect to wait several more months before it can start. I feel frustrated at the lack of information I was given, how doctors send mothers out the door with a label – but then don’t give them any idea on what to expect.
I drive home. As my head is still filled with the information from the meeting, my husband tells me the hospital has called and our daughter’s EEG is going to be on Friday. I need to call the hospital back immediately to confirm the booking. Our son’s therapy swimming lessons are in less than an hour. I have nothing packed. I call the hospital and spend twenty minutes on the phone going over details. I then send a quick email to my mother in law that we’ll be arriving Thursday night for the EEG. My head is spinning with all the information I’ve been given this morning. I make a quick call to the number I was given for ABA and leave a message, then run around, throw together a diaper bag, get both kids loaded into the car, and drive another 30 minutes to take my son to swimming.
Wednesday: we have a nice morning. I go to the gym and workout while my children enjoy the playgroup. I notice my son is quiet when he gets home and doesn’t want to eat or drink much. An hour later his flaming red cheeks alert me, and I take his temperature: 103. He spends the day laying on the couch with a fever that barely drops even with medicine, and complaining of a sore throat, begging me to cuddle him. Knowing he was exposed to strep throat less than two weeks ago, I call the nurses line and they want him seen within 24 hours.
That night, our son wakes up three times in the night with nightmares (extremely unusual for him). His fever never breaks. We no sooner get him back to bed the third time, than our daughter wakes up crying around 3 am. I bring her to bed with me, where it takes her an hour to go back to sleep. My husband and I are both exhausted.
Thursday: my sons’ throat is still hurting and he still has a fever so we go to the doctor before we leave for the city. I imagine it will be a quick in and out visit where we’re given an antibiotic, I’m wrong. Instead the doctor wants tests done on my son: blood, urine and throat swab, they feel they need to rule out mono as well as strep throat. He cries through the blood work, he’s too dehydrated to pee – and worse, the public bathroom there scares him due to his auditory sensory issues. As the automatic toilet flushes, it terrifies him and he stands there shaking and crying. The throat swab at least is the highlight and he gets a popsicle. It’s almost three hours later when we get home, we’ve been given a follow up appointment for Monday to get the results.
I have to run around and get stuff packed for our overnight trip. We pack a special hospital bag for our daughter of things we hope will distract and/or calm her. As I’m trying to get ready, the phone rings. It’s the ABA program calling. Forty-five minutes later my head is again stuffed full of information and things I have to do. There’s going to be another meeting next week, paper work to fill out, and then yet more waiting for a phone call with an appointment. The good news is, contrary to what the therapists at the hospital told me on Tuesday, her therapy will be starting within a month.
We leave. We drive 2.5 hours to stay with my father’s mother and her husband. We have to sleep deprive our daughter for her test, so we have to keep her up until 11:00 pm. She has two more spells that evening. I’m so glad we’re close to having answers. She sleeps in bed with me that night so that we won’t wake her brother up when the 4:00 am alarm goes off. I finally fall asleep around midnight.
Friday: we get up at 4:00 am. We’re exhausted. Four hours sleep isn’t much! Ashley is so tired and keeps trying to fall asleep. As we’re getting ready to leave for the hospital, our son says, “Good luck at the doctor, Ashley!” She immediately starts crying, “No, Mommy. No take me to the doctor. No take me, Mommy. No doctor! No hurt me!” I hate that she has to go through this, but I’m glad it will be over with soon.
The EEG doesn’t happen. As I already mentioned, she would not cooperate at all. It’s hard watching your children go through something so scary to them, that they can’t begin to understand. The technician gives us instructions on what to do: we have to call our doctor first thing Monday and have them send a new referral to them for a sedated EEG. She will have to be admitted to the hospital early in the morning, put to sleep, and then they will do the EEG. She’ll remain in the hospital for most of the day for observation. They should be able to have us in next week and we should have the results within two weeks. I’m remembering how it took 6 weeks for her doctor to send the referral in the first place. I’m not waiting another six weeks for this.
So, added to my to-do list is now another phone call to make, making sure the new referral gets sent, and the knowledge that we’re going to have to make another overnight trip next week. I’m disappointed – I thought this was going to be over and done with. Not that I’d be making arrangements for another trip down, waiting for another call with an appointment, waiting longer for results. I’m glad she’ll be sedated as it’ll be easier for her, but I also know that the sedation process itself will not be easy on her. I’m tired – literally tired (I’m sleep deprived too!), and it’s been a long week. I cry a bit in my husband’s arms and let my frustration out.
So, I hope you can now see how something that seems to trivial to you – having to reschedule an appointment, can be the straw that breaks the camel’s back for a special needs mom. It’s normally not the small, singular event that’s the problem – it’s everything else that has led up to it.