When you take a special needs child to see a specialist such as a neurologist or a therapist in their offices, usually those professionals know what such a trip entails and how to handle it. However, I have found that a trip to the good old, regular MD is another kind of visit. Unless that doctor is also a specialist, they are used to seeing neurotypical kids. It’s probably not their first rodeo, but neurotypical is what they see, day in and day out. And so, sometimes the staff seems similar to a deer in the headlights. You can see it on their faces – oh, this is different.
This is OK. In fact, if I look at this as an opportunity, it is possible for me to educate them to make a smoother visit.
My youngest child is my son, Kai, who is six years old and has special needs. Kai has PVL, Duplicate Chromosome 16, Autism, SPD and more.
How have I simplified the process of taking Kai to the doctor? Here are eleven steps that make that process easier.
- I schedule for either the first appointment of the day or the first appointment after the lunch break.
Waiting is very difficult for Kai. The shortest wait time yields the best results.
2. I write a list of what I need to bring and follow the list as I am getting ready.
When we travel with Kai, he sits in a car seat with a blanket. He still has a diaper bag. His diaper bag has the following items in it: diapers, wipes, bottle, changes of clothes, tablet, hotspot, cookies, toys, Wal-Mart bags for poopy diapers, straws in case he needs to drink something not from the sippy cup (which he will only use for milk), plastic spoons, baby food. Making sure that everything is replenished and ready to go helps me to smooth the way for him. Also, if I think that it won’t be a meal time so I won’t need his food, I am not planning ahead. I just never know how long some things take and I have learned that bringing it no matter what is the best strategy.
Kai will have a significantly better visit if I bring his tablet. I now always bring a hotspot as well. I have gotten into trouble before assuming that places have Wifi.
If Kai has to wait anywhere for more than 3 minutes without a tablet to distract him, he will start to fuss. If we have no tablet, I sing to him for about a half hour, which may keep him more or less occupied. I sing in front of anyone and everyone. We’d have another few minutes of eating cookies (vanilla wafers, Wal-Mart brand, no hydrogenated oils). And that will be all he can tolerate, if that long. A visit of an hour would be too much. He would meltdown. He would pull on my hand in his you-need-to-get-up-and-we-need-to-leave gesture. He would throw himself on the floor. He would cry. He would hit himself. With a tablet, we can wait much longer. Yes, I know that too much tablet time is bad. But I also know that I need to do what I have to do sometimes to make life work for me.
3. I bring a partner if a partner is available and if I think it will help.
If Kai’s dad is available, he always comes with us to the doctor. But because we also have an 8 year old, if we have no care for her, they will stay at home together. We have learned that it is easier when only Kai has to be entertained and distracted. If Kai’s dad is there, as soon as the exam is over, Kai and Daddy can leave. They can go for a walk through the clinic, go outside or go to the car. And I can finish out the waiting time for instructions and prescriptions without forcing Kai to sit through that as well.
4. I tell the staff what they need to know.
In the past, when Kai has had to visit the doctor, the staff has tried to talk to him. He doesn’t answer them. He is mostly non-verbal, just starting to talk. He can say, “Hi,” if he chooses to when prompted. I tell them immediately that he has special needs (although if the staff isn’t frantic, they usually notice). I have always had to explain what PVL (periventricular leukomalacia) is and about all of his other diagnoses. Duplicate Chromosome 16 also trips them up. The staff is always a little embarrassed that they don’t know what these are and I always comfort them, saying something like, “No one ever knows what they are. Even doctors don’t know. Don’t worry about it.” If I am really on top of my game, I will bring written information on his diagnoses for them to keep in his file.
5. I have the staff tell me what they want to do and then I tell them the best way to do it with my son. They are the experts in medical care. I am the expert when it comes to my son.
Kai won’t follow directions the way a neurotypical child does at the doctor. From the very beginning of the visit, I tell the staff that if they explain to me what they want to do, I can help them with Kai. If they want to look in Kai’s throat, I have to run my thumb and forefinger around his teeth in his mouth and exert pressure down on his jaw to open it so they can look. I almost never get bitten anymore. When they want to weigh him I have to talk him through getting on the scale. “OK,” I’ll say, “Put your hand on this handle. Now step up with your foot.” Long wait. “Step up, Kai.” Then, sometimes I have to help him put one foot and then the other on the scale. He may or may not stand still long enough to get weighed. Same for height. He doesn’t like getting his blood pressure taken, having his ears looked in or having the stethescope on his chest. I tell the staff that if they can get what they want, great, and if they can’t, we will just have to let it go. I do everything possible to help them, but if Kai doesn’t want to get his blood pressure taken after we attempt it a couple of times, they will just have to live without this information.
6. I ask for help.
Depending on what Kai has to go through, I have to be creative to get him to cooperate. He is not interested in their stickers. A lollipop means nothing to him. The last time he needed a blood draw, the staff asked me how I would like to handle it. I asked for help. We needed three people to make it happen. I’m sure they thought I was nuts, but I had Kai lay down on the examining table and I CRAWLED ON TOP OF HIM AND PINNED HIM DOWN. I then sang into his ear the entire time. A nurse stood by his head and tried to relax him and another nurse held down his arm and did the blood draw. I warned everyone to stay clear of his legs because his kick is extremely powerful. This worked. Then I signed and said, “All done,” the way we do. We have had x-rays of his lungs in the past. I have to put the drape on when he puts his on. We do it together. I try to hold him still. I have asked for help doing this as well. It takes many, many tries.
I am also not afraid to ask the staff to speak up or repeat themselves. Kai is often fussing in my ear in this setting. I can’t hear them talking but I know I need the information, so I let them know.
7. I walk away.
Sometimes, the visit is just not going to go well. This is just a fact of living the special needs life. If we get there and Kai has a huge meltdown or the doctor is running late or there is something about a staff member that we are dealing with that aggravates Kai, I am OK with walking out. This is a last resort, but I’ve done it. I am Kai’s advocate before anything else.
8. I reschedule.
I know when Kai is having a bad day. It doesn’t happen often, he’s usually a very happy kid. But, just like a neurotypical kid, Kai has bad days. This is not a day to take him to the doctor. If, on appointment day, I can already tell that it is going to be extremely rough before we even leave the house, I will reschedule. Why subject either of us to that when I don’t have to?
9. I speak up.
If the staff is intent on getting information and Kai is truly becoming aggravated, I give them opportunity but I also know when to cut them off. I do this kindly but firmly. Kai hates having that thing put on his finger that takes his heart rate and shows how oxygen saturated his breathing is. I let the staff know in advance that if they can get the information, great, but there is a limit to what I am willing to put Kai through. Unless it is directly related to illness, there is no reason to let Kai become excessively agitated. I won’t let that happen. The staff doesn’t always love me for that. That’s OK. It’s not my job for them to love me, it is my job to take care of my son.
If we have to wait for prescriptions and instructions for Kai, I will request as the staff leaves the room that they expedite this as quickly as possible. And, as I said before, if Kai’s Dad is there, they leave and I wait. But if he’s not, by this point in the visit, the staff knows why they need to move things along. When Kai and I leave an examining room, it is usually covered in cookie crumbs, athough I try to pick up the big chunks of cookie. Packing up to leave is like packing to go on vacation except there is no relaxation coming when we get there. There are probably used wipes around. Kai has learned to shred the paper that is spread out on an exam table so there is that mess too. Invariably, he has taken his shoes and socks off and so those need to be put back on. The cookies and toys and hotspot and tablet go back in the diaper bag, along with any changes of clothes. The entire time I am packing back up, Kai is usually yanking on me to leave. He wants to go home and be in his safe place. His diaper bag is a backpack. I put my crossbody purse on first, then both backpack straps go over my shoulders. Once I am loaded down like I am going hiking, I take Kai by the hand and we go. The staff usually makes an effort to move things along, but if they aren’t moving fast enough, Kai and I leave the exam room and walk up and down the hall, past the desk area where prescriptions and instructions are worked on. He is usually loud and fussy by this point and they seem to work faster under this (subtle!) pressure. This is how Kai speaks up too!
10. I get it in writing.
I am so distracted when we are at the Doctor’s office that I often have no idea what they’ve said to me when giving me prescriptions. By the time I get Kai to the car, that information has disappeared from my brain. I ask that everything be written down. This way, if I forget (and I will), I have something to refer to.
11. I thank them endlessly. I tell them how wonderful they are.
You have never seen a more grateful person than me when I take Kai to the doctor’s office. Compliments? I give them endlessly. Feel goods? I hand them out like candy. Phrases like, “Thank you! You are wonderful!” and, “We are so grateful,” fall from my lips repeatedly. I don’t say them if they aren’t true! But if they are, I say them often. This greases the wheels, gets what Kai needs and leaves everyone feeling good when the visit is over. It costs me nothing, and yields me so much.
What are some of your strategies at the doctor’s office? Please share in the comments below.