Waiting for a Diagnosis for Your Child with Special Needs

Waiting for a Diagnosis for Your Child with Special Needs - jenniferajanes.com

Waiting for a Diagnosis for Your Child with Special Needs

(Note: This isn’t about whether you should or shouldn’t seek a diagnosis for your child. I shared my thoughts on that topic here.)

My daughter has already received a lengthy list of diagnoses, but I’ve spent the last two weeks recording her temperature, trying to help her avoid hypothermia, researching possible reasons why her body temperature is so low, and waiting to hear back from her immunologist about the next steps we’ll take. Despite all the diagnoses we’ve gotten over the years, the overarching probable genetic diagnosis is still elusive, and there are other issues we’re dealing that have led to some neurological testing. (One test was done on New Year’s Eve. The other will be in February.) We’re making some unexpected trips back to a specialty we thought we wouldn’t have to see again. The waiting to figure out if we’re dealing with another diagnosis or just a benign issue is hard.

If you’re in the process of looking for answers for your child, you are not alone. I’ve been on this journey for almost a decade, and there’s no end in sight. The waiting is hard, and it can go on for the foreseeable future. How do you deal with the waiting and the questions?

Here are some things I’ve learned:

  • The process takes time. Diagnoses do not come as quickly and easily as the movies and TV would have us believe. It’s a long, involved process, and we may never really get the answers we seek. Even if we do, getting testing and evaluations scheduled and the results back takes a while—sometimes months or even years.
  • You have to advocate for your child. You know your child better than anyone. Don’t let a professional belittle you and tell you nothing is wrong with your child with a cursory examination and a curt dismissal. If you feel something is wrong, find another professional who will listen to you and give your child a thorough examination so that your mind can be at ease one way or the other.
  • You need support. You need friends to walk with you through this. Find them in your community or online. Even while you wait for answers, it helps to have someone come alongside and listen to you while you talk through and process everything that’s going on. If someone can attend appointments with you, that’s even better. An extra set of ears to hear what the specialists are telling you, to ask any questions that may not occur to you at the moment, and to confirm that you heard what you thought you heard (or to clarify something you misunderstood) is priceless.
  • Don’t forget to enjoy life. When your child is going through testing and evaluations, it’s easy to become consumed in researching possible diagnoses and treatments. When you allow the diagnosis process to take over your every waking thought, you miss what’s right in front of you: precious moments with your child, family, and friends. You won’t ever get those moments back, so do what you can each day to get answers for your child, and then set it aside and enjoy the gift that is today.

What tips do you have for dealing with the waiting period that comes with seeking a diagnosis for your child?

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7 Responses to Waiting for a Diagnosis for Your Child with Special Needs

  1. Robyn Wright says:

    {{{HUGS}}} first. Second, great post. You are so right on all the points you made. It can feel like eternal limbo trying to figure out exactly what is going on. I would add that along with being a strong advocate for your child that you also teach your child to advocate for themselves as they grow too. How much they can do this will depend on what their individual situation is, but there is almost always some amount they can learn. For my son there was a lot that he could learn about being his own advocate. I’m still here to support him, but he is much more confident in talking to professionals now about his conditions on his own without Mom.

    • That’s an excellent point. Robyn. I will remember that as my daughter gets older. She speaks up more now than she used to, but expressive language disorder makes it difficult for her to communicate what she intends. We’ll keep working on it!

  2. Beth says:

    I am sorry that you are going through trying to find answers. These are some good reminders and helpful. Thank you for sharing.

  3. Patience. One of the fruits of the Spirit which God seems determined to develop in parents waiting for a diagnosis for their children. Thank you for the practical ideas about how to wait patiently. And thanks for adding this post to DifferentDream.com’s Tuesday special needs link up.

  4. A very wise post that will bless people, I’m sure. When my son was diagnosed w/Down syndrome a day after his birth, we went through shock and grief. But in the intervening 20+ years, I’ve decided that being suddenly hit with a shocking diagnosis (backed up with genetic evidence) may be a little easier than going through the long process of realizing there’s a problem, getting a diagnosis and then figuring out how to proceed.

    And as you state, being your child’s advocate is essential!

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