Journey as a Special Needs Parent: Part 2 of 2


Special Needs Parent Camilla Downs

In Part 1 of her story, Camilla Downs told of learning that her daughter ,Lillian, had special needs. In Part 2 Camilla discusses the steps she took as she began her journey and offers advice to other special needs parents.

“How Do We Fix It”

Initial feelings during the call or consultation to receive a special needs diagnosis for your child can range from denial, to that of surreal, and bewilderment. What follows next for some is moving into “how do we fix it” mode. And, for some of us, that initial call ends with, “What do you mean you’ve never heard of this?” Others may receive a bit of paperwork found online or from medical journals.

Some parents are told your child won’t, can’t, and probably won’t ever do this, that, or the other and it’s just a “wait and see” diagnosis. Some may receive a “well known” and documented diagnosis and have a myriad of information at their fingertips. Most parents who receive a rare chromosome disorder diagnosis or other rare condition take it upon themselves to do their own research. 

There are four crucial stages when we begin this new journey of being a parent to someone with special needs. They are:

    1. Allow yourself to process unhappy feelings
    2. Establish a support team
    3. Do your own research in addition to what is received at time of diagnosis
    4. Trust your intuition

A Support Team Is Vital

When we come out of the fog of receiving our child’s diagnosis, most of us go right into, “Ok. What’s the next step?” That next step is doing your own research to go along with what you received at time of diagnosis. Locate support groups for the diagnosis and connect with other parents. Having a support team is critical as being a parent to a special needs child can easily overtake every single minute of your day. It will be imperative that you have a team in place to allow you respite. It is crucial that we trust our intuition as a parent, especially when parenting someone with special needs. They may not be able to communicate and we have a connection and bond with them unlike any other person.

Guilt, “Why Us” and “Why Me” questions are thoughts that overtake us in the initial stages of receiving a diagnosis such as this about our child. We must not beat ourselves up for having these thoughts. Experience them and move past them. It’s toxic to not let yourself feel the unhappy feelings that will surely be there.

MORE: She is also available for freelance writing opportunities and guest blogging. Camilla can be reached via email to To learn more about Camilla and the book visit her website at To learn more about Chromosome 18 abnormalities visit

5 Responses to “Journey as a Special Needs Parent: Part 2 of 2”

  1. Thanks tons for your input Kimberly!

    Absolutely right on Wendy! I have also revisited the stages and am truly blessed for The Chromosome 18 Registry and the private list serve that we utilize to share trials, triumphs and advise!

    Thank you Laura for your thoughtful comments … The more we all talk about this the better!!

    Thank you Rachel … So much appreciate your support and encouragement!

  2. Beautiful and powerful Camilla. YOu are a shining light for so many. I’m inspired by your dedication.

  3. Laura Boyer says:

    That is really good advice Camilla. I couldn’t agree with you more especially the part about trusting your intuition. Our kids can’t always tell us what is wrong and the doctors like to think they know more than they do sometimes. If something doesn’t seem right, even if the doctor tells you to “wait and see” or “don’t worry so much”. as a parent you have to keep pushing until you are satisfied. You have to trust your instincts and I know many moms and dads who wait years for answers for a problem that they knew was there all along and no one would listen to them. Keep on writing. I wish someone had told me all this when I found out about Katelyn’s condition. Many of us found out things the hard way. Hopefully articles like this will make the road just a tad bit easier for another parent in the future.

  4. Wendy says:

    Great thoughts! Thank you for acknowledging the stages we all go thru. It might be good to know that as a parent of a special needs child, I have often revisited these stages. As our child grew, and new challenges were faced, I have had to rely on my support group to help in so many ways!

  5. Thanks for running this 2-part series on such a challenging conversation. Very helpful.

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