Friday, February 27, 2015

the diagnosis

Understanding Bugaboo so that he can get the best support possible has been a journey. Many of you who have read my blog for a long time (and/or are part of our lives in real life) have watched us try to find the right therapies, go to various doctors and specialists, and then a year and a half ago get a diagnosis of mild cerebral palsy and "wait and see" on some other things.

The waiting and seeing was hard.

We continued with therapies. We tried preschool. We stuck with therapists that were working well (and that weren't taken from us after age three), and we found new therapists when others did not work well.  Some circumstances this summer pushed us forward even more in trying to unlock the mystery of our youngest child.  The crying spells and meltdowns increased.  Bug gained more words and the ability to speak more, but the communication did not improve and the echolalia became more noticeable, more frequent. The gap between how his peers interacted with each other and how our son did not interact with them grew even wider. It is a hard thing to observe this on a playground or in a Sunday school room.

So with the recommendation of our pediatrician, we recently took Bugaboo in for an evaluation. We knew what they were going to tell us. I taught elementary school. The Hubs works in the psychology field. Everything was there in the DSM (IV and V) for us to check off.

But it's one thing to know the label your child is going to be given, and it is another thing to sit at a table and have an expert  with all the paperwork tell you that label. It is not a surprise, but it is still a shock. 

In a matter of moments many of your hopes are dashed, your prayers are not answered the way you wanted them to be, and your dreams for your child's future become fuzzy.


I drove home with the boys in the minivan. Unfortunately it was Bubby's day to pick the radio station, so I didn't even have uplifting or memorable music on the ride home. I don't know why this is important to the story, but I felt a bit frustrated by it yesterday. The rest of the day had to continue. There was dinner to make, laundry to avoid, and bedtime stories to read.

A wise and trusted friend who has had a similar journey reminded me that Bugaboo is still the same Bugaboo and "God is still the same God, no matter what terminology we use to describe him." And it was comforting and true to hear that.  Today was the same as the days before our new diagnosis. We got up, went to therapy, did some things at home, met friends to eat lunch and to play, and so on.

I have fears though, tonight. I fear that the label Bug has been given will make some people view him differently or treat him differently- even more differently than they might already view/treat him. But I have no control over what people think or do. And so I share with those of you who have been on this long journey with us that the journey is really only beginning.  Bugaboo has been given an autism diagnosis. There is a lot for our family still to process, questions we have, fears we are facing, but we have been given the grace to get through our questions and fears today.

He's still the same Bugaboo he was the yesterday, the same Bug he was last week and last month. And I love him so incredibly much. What a blessed woman am I that I get to be his mama - not because he has CP or autism - but because he is Bugaboo, my son.

12 comments:

  1. I care and think that both of your boys are beautiful/handsome--in appearance and in spirit--and have awesome parents--and the grandmother, whom I know!!! Love, LeaAnn/Ann

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    1. Thank you, Ann. That means a lot. You are someone I have always thought highly of and your words mean so much.

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  2. One step at a time is the best most of us can do, most of the time. I love you, and I'm here for you. xo

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    1. Thanks, Brandee. Love you, too! So thankful for your friendship!

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  3. Your love for him is so apparent in your writing. I know he is a gift to you, even though he has differences. I pray the diagnosis opens to doors to new resources- respite and great therapists and even more importantly, a community of families to connect with. As an ABA therapist to kids with Autism, this seems so helpful. Praying for you all- even though we've met- praying :)

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    1. Thanks, Meg. I made the phone call for the place that will hopefully get us pointed in the right direction for ABA therapy. That was one of the motivating factors in getting the eval done. Thank you for your prayers.

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  4. My friend Lauren has a boy with Autism. It feels trite to throw a blog post at ya, but her writing is stellar and encouraging. http://www.laurencasper.com/2014/11/20/the-hardest-part-of-autism-and-it-isnt-him/

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    1. Thanks for sharing her link, Meg. I found myself understanding so much of what she wrote - and such beautiful writing.

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  5. Amanda, so sad to hear that your suspicions have been confirmed. Though you and many others wish it could be different, we know that God knows and feels your disappointment and will be there to give you comfort and strength and patience and the wisdom to go ahead from here. He has in the past and he will continue to meet your needs from day to day. For those of us who are moms, we know that motherhood is a tough role at times. We also know that no matter what it brings to us, we will fulfill it to the best of our abilities, with God's help. I admire you and Mike so much for what you have already given to your children, and I have no doubt that you will continue to love and nurture them into adulthood and beyond. That will not change with this diagnosis. Blessings to all of you.

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    1. Thank you for your kind and thoughtful words, Cheryl. Appreciate your encouragement.

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  6. Brooke (Akin) HendrickxMarch 2, 2015 at 3:07 PM

    Hi Amanda,

    I've been reading your blog for the past few months. I initially wanted to say that I'm sorry for the diagnosis, but that seemed wrong because "sorry" didn't seem like the right feeling. Bug is your son, your baby, and there is nothing for him or anyone else to be sorry for. So instead, I want to help you find more hope, more silver linings in having an official diagnosis. I hope that this diagnosis opens more doors for Bug to get the supportive services that he needs to be the best Bug he can be! I hope it eases some of the daily frustrations that having young children brings by bringing you a new understanding and insight to your son and family dynamic. From your very open and honest posts it is clear that you have an amazing family and two wonderful little boys! Being the mama of two boys takes a special person - and you're doing a great job!

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    1. Thank you, Brooke, for your encouraging words. I really appreciate your thoughts about not saying sorry- that was incredibly comforting that you offered words and wishes for hope instead.

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Thanks for stopping by and sharing your thoughts with me.