Finding your way

When your child is diagnosed with cancer, mental illness, a Syndrome, ADHD, Autism, (put your child’s struggle here) or PACS1 a parents first thought is usually a variation of HOLY CRAP to what the heck do I do now?

The truth is, there is no road map to parenting a child who has more than typical needs.

  • Whether it is learning that your child is not suffering from normal teenage angst but a serious mental illness.
  • Whether it is learning that your child just isn’t making milestones but is seriously behind their peers
  • Whether it is learning the worst news a parent can receive, that their child may have a terminal diagnosis
  • Whether it is learning that your child has ADHD, something too many people think is a made up word for bad parenting
  • Whether it is learning that although you always fed your child healthy meals, that child is now bulimic or anorexic
  • Whether it is learning that your child committed a crime, even though they are a straight-A student
  • Whether it is learning that your child was killed in a drunk driving accident, even though they were sober in the car

When a parent learns any of the above (or worse), that is sometimes all they learn. They may be given a pamphlet of with website information. Their child may be placed on medication. Yet from this moment on, that parent is facing the battle to have their child survive without any clue of how to start.

Very few of these parents are provided the tools needed to survive.  Too often, parents are not given resources on how to keep their family whole while in battle.

In fairness, at one point I am sure a doctor/therapist/nurse/teacher told the parent that they could look “here” for support. The parent was still in shock and (from experience) heard nothing past the diagnosis. The doctor/nurse/therapist/teacher moved on to the next patient/student and on with their lives (as it should be). The parent is sitting there thinking what the (insert your favorite expletive here).

No one is there to answer, what the freak do I do now?

When your child is young and ill, you are too busy battling lack of sleep and too many health issues. I cannot speak to when your child is older, or faced with mental illness or insert your battle here. But I do believe we all had the exact same feelings.

  • I’m alone.
  • I don’t know what to do.
  • What did I do to screw up my kid?
  • What do I do to make sure I don’t screw it up more?
  • How do I tell my family and friends?

The answer to the last one is the easiest and most important. You tell them what you think they can handle, and only those you think will be there to support you emotionally. Forget anyone else, they are no longer important. Sounds simplistic, but it’s true.  I was looking over the last eight years with Bridget, wondering why I have so much support and so lucky that I have friends and a “team” that help me navigate this life.  I realized I didn’t have any of this, I was stuck in the holy crap I feel alone except for a very small group of friends. And I didn’t share half of what I was thinking or feeling.

  • I don’t want to be judged
  • I’m supposed to be strong
  • Mothers are supposed to have all the answers
  • They are so busy in their lives, I don’t want to be a burden

Parents need to be told not once, but multiple times, where to go for help. Have mental illness? Here is X Y and Z. Check in 2 months later. Have behavioral issues? Here is the local contact. And on and on, not just a website (and HIPAA be damned) but a person who calls or knocks on the door and guides the new parent through the life they did not expect.

I know it’s hard, but it is when you start sharing you begin to not only feel you are not alone but you understand you are not the only one in battle. Sadly, you need to be your best advocate. You have to speak up and say I need help. They might not understand 100%, but just enough to save your sanity. It might not be the exact same, but we all have the same need.

  • To Learn how to deal with an insurance agency
  • To Learn how to deal with the pharmacy
  • To Learn how to get referrals to a specialist and not just the local doctor (who is great at ear infections, not so great at rare syndromes)
  • To Learn how to become an advocate for their child
  • To Learn how to navigate the IEP and 504 process
  • To Learn where to find parental and sibling support for families exactly like them
  • To Learn how to find treatment for their child
  • To Learn how to raise this child without losing your marriage, your home or your financial security

There is so much information for a parent to learn after they learn a diagnosis. Usually we only learn from the other parents who have been through the war.  The diagnosis is not the end but the beginning of a new journey. To misquote the X-Files, “The Truth Is Out There” you just have to keep searching.

 

 

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