Decision-making is a crucial part of parenting kids with special needs. Today, guest blogger April Brownlee is back with Part 2 in a 2-part series about how to handle difficult decisions. In Part 1, she relayed the first of the 5 tips. Today, she explains 4 more that come from experience as the parent of a daughter who lives with Noonan’s Syndrome.

Tips for Making Special Needs Decisions, Pt. 2

Tip #2 for Making Difficult Medical Decisions

Doctors aren’t always right. Sometimes, you gotta go with your gut.

During an episode of Oprah, I once heard the famed pediatrician, Dr. William Sears, say something I have carried with me every day since: “You are your child’s first doctor.” That little bit of wisdom came at a time in my life when I was struggling to effectively advocate for my own child. It helped reinforce what I knew deep down—that something was wrong with my child, and I was not overreacting. Australian mom Sophie Lonsdale agrees mom sometimes knows best. “When I was pregnant with my daughter, and they started to think there was just too much wrong with her, a doctor asked me, ‘What are your thoughts on abortion?’ I was told my only option was to abort her as she would not function well enough to have a good quality of life. I felt that they were wrong. Something just said, ‘she will be great, leave her alone.’ So I made the decision to go against all of the experts and give her life. She is now 11-years-old and, Noonan syndrome aside, lives a normal, happy life.”

Illinois mom Katie Thorstenson had a similar experience while pregnant with son, Drew. “I had found out originally at 12 weeks that something was not ‘normal.’ They had suggested terminating, as my baby had a cystic hygroma and from their statistics, it generally led to fetal demise. As emotional as this journey was, I placed my baby’s fate in God’s hands and continued to pray every minute of the day.” Drew was later diagnosed with Noonan syndrome. “There are no words to describe how rewarding this journey has been so far. Drew has dealt with his share of ups and downs but to see him hit his milestones is extremely gratifying. I have learned so much about patience and I truly am a firm believer that God doesn’t give you more than you can handle,” says Katie.

Tip #3 for Making Difficult Decisions

Be strong for your child. And when the time comes, empower your child to be strong for themselves.

“There have been so many difficult decisions that I have had to make on my own,” says Lynda Robinson, who lives in Scotland with son, Connor. “The one that sticks in my mind is when he asked me to be with him to hold his hand in the operating theater. He was having Botox injected into his left eye, as surgery was no longer an option. He had to have it done under a local anesthetic. It wasn’t nice to watch my poor boy in so much pain, but I knew that I had to be strong for him even though I felt like crumbling or running away. Connor is in control of his own decisions now and has chosen no more surgery.”

Tip #4 for Making Difficult Decisions

Knowledge is power and so is a support system. Lean on both.

Says Karien O’Kennedy, who lives in South Africa with her husband and children—one of whom was diagnosed with Noonan syndrome, “Empower yourself with knowledge and surround yourself with support. Knowing and engaging with people in similar situations helps a lot. Remember, it is not just about this one child. You have a spouse and other children for whom you have to be strong.”

Tip # 5 for Making Difficult Decisions

Don’t forget to take care of YOU.

“I am not good with words or advice, but I’ll leave you with this,” says Laura Gardner. “Breathe. Take care of yourself physically, mentally, and emotionally, for your children need you. They depend on you to be their voice…. to be their rock. You are no good to them if you are falling apart.”

And take it all in stride, says Katie Thorstenson. “I think the best advice I can give is to take everything one day at a time. At the end of the day, you want what is best for your child and as long as you are doing everything in your power for that to happen, the rest will fall into place.”

For more information on Noonan syndrome, its variants, or the RASopathies, visit Rasopathies Network or teamnoonan.org.

What Decision-Making Tips Work for You?

Which of April’s tips do you employ? What other tips have you developed for making those difficult decisions parents of kids with special needs sometimes have to make. Leave a comment below to share your ideas. Thanks!

Five Tips for Making Special Needs Decisions, Part 1

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