Hearing Your Child’s Diagnosis For The First Time
Several months ago I ran across a blog in my research for this site. The title of the post stopped my surfing. “Early Intervention Sucks.”
OUCH! Being a pediatric SLP who specializes in early intervention, this hit a little too close to home.
My heart sank as I read her story. She had just finished the initial evaluation with her state’s early intervention team, and they told her they suspected that her son has autism.
As she typed the post, there she was right smack in the middle of those first stages of grief, bouncing back and forth between denial, isolation, and anger, all there in black and white for the world to see.
I felt so badly for her. Even though I’ve never met her, I know her. I’ve been on the other side of the table from her for years, sitting right across from her, trying to swallow the lump in my throat, gripping my well-worn test manual with white knuckles, and trying my best not to tear up as I deliver the words that would confirm her worst fears. It’s not easy being a dream killer.
Since I originally read her blog, I’ve thought about her often. Sometimes it’s because I’ve told a mom the truth, and I could see all over her face how much my words hurt her. Sometimes I’ve thought about it when I’ve opted to save a hard conversation for another day. In recent years there have been a few times when I’ve decided that life-changing news can wait a week or two. The truth is that sometimes you’re never ready to hear what might need to be said about your child.
Just this week I ran across that same blog, again while doing research for this site. At least 6 months have passed since I read her thoughts, and my how things have changed. This mom has blossomed into a wonderful resource of realistic hope and practical information for other parents. Her words are not the kind of too-good-to-be-true “cure” that you read about in supermarket magazines or hear from a celebrity on Oprah. As she shares her story, you read about the hard work of one family doing everything they can to help their young son.
When I contacted her to see if she’d mind if I posted a link to her blog here at teachmetotalk.com, I wrote that I’d thought about her original post often since reading it, especially when having those initial difficult conversations with parents.
She sent me back this comment, “I wish I could give you advice as to how to soften that blow, but I have none. But think of it this way: the “blow” is an essential part of the journey. You can’t skip that step, and the anger and irrationality that comes with it.”
The next time I’m feeling queasy about the news I have to share, I hope I remember that.
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You can read this mom’s blog “A Little Big Autistic” from our new blogroll.
Comment by Janet on 31 October 2008:
Laura,
I’m a grandmother/mother that knows nothing about blogs. I would like to read “A Little Big Autistic” from your new blogroll but have no idea how to get to it.
Could you please help me? My grandson (18 months) has a diagnosis of significant speech delay and poor eye contact. My daughter gut feeling is autism. He will be evaluated by an ENT on the 4th of Nov., his speech therapy thru Early Intervention starts Nov. 6th.
My daughter is having a difficult time with this diagnosis and her gut feeling. How can I help!
Comment by MaryAnn on 31 October 2008:
It’s never easy hearing the news. I know, I’ve experienced it twice - both my son and daughter were diagnosed with receptive language delays (it was only easier the second time around because I knew that therapy works). The good news is that with early intervention my children received therapy and my husband and I learned how to best help them. My son speaks beautifully and a lot now (he’s 7 and was diagnosed 5 years ago) and reads above grade level. Who cares if the mother is upset - we’re talking about the child’s best interest.
Comment by Laura on 31 October 2008:
Janet - I don’t have the blogroll published yet because I too have to have help everytime I need to learn how to do a new feature on the site! Hopefully this will be available soon.
I also don’t know how to do a real link, and my technical support person is busy, so until he can do it, here’s the address for you to highlight, copy, then paste into your address bar -
http://ppdnos.blogspot.com/2008/10/dh-guest-blogging-today.html
As for what grandparents can do, I am actually working on an article about that very topic! My most important piece of advice is to be very sensitive to a parents’ feelings, especially during this initial diagnosis phase. I have had so many wonderful grandparents of children I see over the years, and I’ve had some that were so unsupportive that it made my heart break.
One other thing you might want to do is help your daughter research and explore treatment options. Helping her wade thru websites and books for useful information I think would always be welcomed.
The next thing you could do is take on some of his “treatment” yourself. Read the articles on this site and techniques from the DVD to start your own “grandma” therapy sessions. My own mother tries to do this with all of her grandchildren who are toddlers and young preschoolers because she recognizes how important language skills are for future academic success (and she’s become quite a speech therapy junkie herself hearing me talk about this and after reading all of my stuff!).
I won’t go any further, or I’m going to retype the whole article I’ve started about grandparents! Look for it soon!
Laura
Comment by Laura on 31 October 2008:
Mary Ann - Thanks for your comments! Hope you’re enjoying the site! Laura
Comment by Another Laura on 2 November 2008:
Hi, what a great blog/website you have. And thanks for the note, and not writing me off.
I’ll definitely be a frequent visitor here. In addition to being speech delayed and scripting, Brad has disfluency and articulation issues. So he’ll be in speech therapy for the foreseeable future.
Thanks again for your heartfelt note.
Another Laura
Comment by Janet on 3 November 2008:
Laura,
Thank you for responding so quickly. I appreciate your help!
As to, MaryAnn’s comment: “Who cares if the mother is upset - we’re talking about the child’s best interest”. I CARE, this is where it all starts….the MOTHER getting help for her child! I’m the grandmother to my grandchild and I’m the mother to the grandchild’s mother…it all comes down to a MOTHER BEING A MOTHER FOREVER! and I will do everything in my power to help BOTH of them!
Comment by Laura on 3 November 2008:
Janet - Thanks for being such a great grandmother and so supportive for your daughter in her quest to be the best mom she can be.
I think Mary Ann’s comments were based on her own experiences and were directed only to me in telling me not to be emotional in delivering difficult news to a parent.
Thanks for reading the site, and look for the grandparent article this week! Laura
Comment by Laura on 3 November 2008:
Dear “Another” Laura - I love your blog, and I know other parents are going to benefit from reading about your experiences. Thanks again for being willing to share with readers on this site! Laura
Comment by Julie on 6 November 2008:
Laura, another GREAT article…I still remember the day I recieved the initial eval report from EI…I sat in my living room holding on to Gabe and sobbed…seeing it in black and white there on paper made it so much worse and so real…I almost get teary thinking about it now. Of course, Gabe wasn’t dxed as autistic, but apraxic. Even though I had known that he was apraxic (after a lot of research,) the news from a Dr. still hurt. Part of the process definetly…but never easy to hear.-Julie
Comment by Another Laura on 8 November 2008:
Hi,
FYI: I added a link to your site on my blog under “Newly Diagnosed.”