When you are the parent of a child with disabilities, you may often have friends forward you video clips or stories of children dealing with similar issues. This to me is generally a positive thing. It means that for one, someone cares enough to send you the clip or story. For another, it means your efforts to spread awareness of the condition(s) your child has are reaching people.
Recently, there was a really cool video clip sent to me of a service dog doing tasks for her handler who has postural orthostatic tachycardia syndrome (POTS). I was very impressed to see this intelligent dog helping out a young lady who needed the help.
I understand why the video was sent to me — my 13-year-old daughter, Carolina, has POTS. She was diagnosed months ago, and it has significantly impacted all of our lives. It causes elevated heart rate and she becomes really dizzy, very weak, nauseated, and she loses her peripheral vision. She has to drink two liters of water daily and eat a lot of salt to help lessen her symptoms, plus she takes medications to help as well. Unfortunately they do not take away the symptoms but do help somewhat.
Carolina also has Ehlers-Danlos syndrome hypermobility type (EDS) and it is a connective tissue disorder that causes a lot of pain and other issues for her.
Carolina is ambulatory and still tries to be physically active. She does wind up having POTS symptoms frequently, though, and often has to sit down or lie down. If we go out and she starts having tachycardia or increased symptoms, we often find a chair for her or a scooter if we are in a place that has one. If there is a lot of walking planned, we know she either needs a scooter or someone to push her in a wheelchair. We are a “medically complicated” family of four so her father and I often use mobility aids for distances or shopping ourselves, and her younger brother has some of the same issues.
It is frustrating for Carolina for her body to be slowing her down. Of course, her father and I want to do anything we can to help her gain back some of her sparkle as well as help her physically. I saw this video of the young woman and her dog, and since then I have been considering and then quietly looking into the prospect of Carolina getting a service dog. We do need to narrow down the field to breeds such as the goldendoodle or standard poodle, as my son has allergies. I am still learning about all of the tasks a service dog could do that would specifically benefit my daughter. It can be trained to open the fridge and bring water (remember she has to drink two liters of water daily), bring packaged snacks, bring a blanket, retrieve dropped objects (she gets lightheaded bending over plus her back hurts from EDS), open doors, and more I am still learning about. Carolina would greatly benefit from those tasks being done for her. I am told that only some service dogs have the instinct to alert to cardiac changes (such as when she is having tachycardia) but that it is at least a possibility. It would be miraculous to have a dog that could alert Carolina that she is beginning a tachycardia episode so she could lie down and hydrate, because Carolina is young and doesn’t sometimes realize it is happening until she feels dizzy, nauseated, and loses her peripheral vision. So far she hasn’t fainted but she has seen spots and been really close to it.
Here is the dilemma, which honestly should not be one at all. There will be those who see her as “not that kind of sick.” Invisible illnesses can be so infuriating to deal with that way. I have been researching service dog agencies that train them, because the training is a huge undertaking that I know would be best not handled by us. One well known and highly recommended agency requires a $17,000 fee for the dog plus the training. Thank goodness the agency does give tips on fundraising so that families can ask for public support to help with the cost.
I have gone through a lot as a mom of children with medical issues, and while dealing with my own disabilities. First, I was dumbfounded that anyone wouldn’t believe what the doctors said my children had when they were diagnosed with things when they were little. Then I was hurt. I learned it happens with a lot of families dealing with special needs – that family and friends can be very unsupportive. Then I went through years of being insecure and not trusting my own opinions about lots of things and often asking others for everything from my hairstyles to proofreading help to medical opinions. I was not good at making firm decisions during that time. I was struggling with a lot of things and truly felt adrift. I was very depressed even though I didn’t see it that way.
Then came a decision where I felt I didn’t really need to ask for opinions, but I did anyway, because that was what I was used to doing. Turns out there was a huge misunderstanding, but it led me to realize I should never have felt the need to ask. I also realized I had grown as a person, and as a mother. My instincts are much stronger and I am much more grounded. I only actually needed to discuss things with my husband in that instance, and he agreed with me and had my back.
Now back to the decision about whether to apply for a service dog for my daughter. I have had the worry that naysayers who don’t see her at her worst will form opinions about me. I have thought some will see me as a gold digger, or “exploiting my child” even though this is something she could greatly benefit from.
I have spoken with my daughter about the fact that it will cause others to possibly view her differently. It was her words and opinion that snapped me back. “Mama, I don’t care what others think.” She has the most amazing personality. She does care about maintaining a good reputation, but if someone misunderstands or chooses to find fault in a situation where there is none, she says she doesn’t care and lets that junk go. She does get angry if someone is dismissive of her health conditions, but even at 13 she is quick to educate them, and do it accurately and eloquently. She does care about the opinions of those that are closest to her and she has strong faith so she cares about pleasing our Heavenly Father, but she says she doesn’t worry about the opinions of others that aren’t inside our situation. Carolina knows she could be helped greatly by having a service dog, so that is what matters.
That is also what matters to me. I have prayed about it, spoken with my husband about it, and spoken with Carolina about it. We are beginning the application process, and I am secure in our decision. That feels very, very good.
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