Dealing with a Diagnosis

When it comes to big, bad news and kids, it’s all scary. A newborn with something visibly wrong at birth. A baby who won’t latch on and begins to lose weight. A school-aged child who struggles to read. A pre-teen with strange health issues that are tough to diagnose. A teen who breaks an arm and that break leads to a cancer diagnosis.

My son’s latest complex health issue is severe scoliosis. When one of these medical or developmental things falls into a parent’s lap, the world stops spinning and the search for resources—external and internal—begins.

You can’t possibly prepare for all things or always know who to turn to when you are sliding down the mountain grasping for some strong hold. All we can do as parents is, well I hate to quote Disney, but as Anna says in Frozen II, “Just do the next right thing.”

To do that, though, we may need ideas and resources. Here are a few to keep in mind when big and small things go bad:

Draw from experience. Remember all the things you have done so far in your life and use the knowledge that you have from doing those things to give you courage now. I know, that sounds a bit airy-fairy but trust me, in your core there are strong roots.

Ask a lot of questions. You may be facing a teacher or medical specialists. Don’t be afraid to ask questions and make sure they know that you know you are your kid’s expert. Many understand this and appreciate the expertise of parents. If they don’t, make sure to tell them—you can even say, “My son or daughter is unique in these ways, and so even though you may not pick up on X, I certainly do.” A friend recently suggested these two questions: What have I not asked that I should have? and What have you not told me that you should? I used these at a recent consult with the anesthesiologist for my sons’ surgery and she was impressed by the question, paused to really think, and then gave me some important insights.

Try to give yourself a break. Obviously as the mom or dad, you may carry a bit of self-blame when things go bad. Trust me, you can’t know everything. My son was born with a rare genetic syndrome called Prader-Willi, I had never heard of it, and while I had a complex pregnancy, there is no way I could have known and knowing wouldn’t have changed a thing or helped me prepare.

Don’t use google search as the answer. I go online to do background research and to inform questions for specialists. I rarely make decision based on online research, but I do sometimes get myself tangled up in knots so maybe limit the online research.

Trust your instincts even if they feel a bit wobbly and inform them by asking questions. There were so many decisions to make in the first days of my son’s life—even during his birth. My husband and I moved from one to the next slowly, we asked a lot of questions, we quietly freaked out, we held him, we asked more questions. We said no to a feeding tube and worked hard to get him to suck from a bottle. We kept negotiating each thing as it came up. And we still do.

Find resources. If you have a new diagnosis, do a search in your area for the name of the diagnosis to find the groups nearby. I am not a good joiner but see if you can attend a meeting rather than a party—maybe not the Autism Families Christmas Party but a picnic or sports event that is outdoors and less hectic.

Investigate school resources, too. Who is your district’s Special Education principal? Go and meet them, and meet the teachers and principals in your child’s school. If your child has complex needs, physical or developmental, take handouts for them. For my own part, I have type 1 diabetes and, as a kid, always took a long handout on diabetes to all my new schools, and my mom came along to explain what it meant and that I’d need to have snacks during class time.

Advocate for your child. This can be frustrating, believe me, but there are also parent groups for special needs families to help with advocacy. As I got older, I could advocate for myself at school, but this is not true for my son. I am prepared to keep visiting my son’s school, even into high school and college. Keep reminding the teaching or camp staff what your child needs and that you are part of his or her success.

Listen to your child. My son is relatively non-verbal and so sometimes it takes me a while to catch on to what he is saying because of communication struggles (remember that point on giving yourself a break). But when I do catch on, I immediately let him know, and take required action. This also lets him know that as slow as mom is, his words and communication are important and have meaning.

Pay attention to your own mind. How is the internal conversation going? During the last few months, getting ready for my son’s spinal surgery, my inner voice has been hard on me. If you have this too, can I suggest breathing, letting those thoughts pass through, and speaking with a counsellor to give you some tools to reframe the internal conversation relating to your child’s diagnosis?

Talk to friends about how you are doing. Perhaps you are worried they won’t understand or that you will be a burden but believe me friends are amazing and resourceful and helpful. They will ask you questions and enable the scary thoughts held within to escape. Essential service is what friends provide. Let them provide it.

Try not to isolate yourself within the worry and the care of your child. Keep in the world. Covid-19 has led to families with diverse and neurodiverse children being more isolated due to the fear of children catching the disease. Use all the technology available to connect with people.

Recognize that things are always changing: your kids as they develop, yourself as you get older, the systems in place shift due to funding, it is all slightly annoying, exhausting and some of it also exhilarating

Resources

autism.bc

Facebook groups: Vancouver Island Service Providers, Respite Care in Victoria BC

actcommunity.ca

Search “special needs bc” and a lot of info will come up; and The Ministry of Children and Family Development has a lot of info too. For Prader-Willi Syndrome, for example, there is a BC organization, a Canadian one, a US one that has a lot of good info (don’t be afraid to cross the border for info), FB groups and other resources. I go to these for everything to gain insight on what may be happening for my son in comparison to other families and for facts and resources. Better than a general google search.

Ask at your place of employment about counselling if you decide to do that and also if your son or daughter is on the Autism Spectrum know that funding can be applied to this kind of self-care for parents.

One of the best places in the world is the Queen Alexandra Centre for Children’s Health. Check out their website, there are resources there you may not have ever heard of. School specialists are based there. With scoliosis surgery I recently learned my son will have a PT and OT team for post-op care. Amazing. islandhealth.ca/our-locations/hospitals-health-centre-locations/queen-alexandra-centre-childrens-health

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