Diagnosis, A Defining Moment

I remember the moment perfectly. I was a counselor and was at a Burger King with a client when I heard the news about the planes hitting the twin towers in New York.  The rest of that day, my role was to help my clients process their own fears as the news unfolded.  Coming alongside the student who had hidden under his desk and was scared to come out and checking in with the rest of my families to see how they were doing.

There was a unification in our country as we mourned with the families impacted and we wanted justice. There was a time when it was no longer taboo to talk about God and how He comes alongside us.

The pain has faded for many and except for a posters on 9/11 saying “We Will Remember”, life has returned to normal for those who were not directly impacted.

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 For those of us with a child impacted by disability, there is another date that is cemented in our minds. We each have our own twin towers moment. That moment when our world came crashing down. My twin towers moment began with Sarah telling me, “I think our son has autism.” The rest of the conversation is a bit of a blur to me as she walked me through why she thought Jordan was autistic but I do remember the emotions.

I remember being flooded with denial and thinking that she was over-reacting and must be wrong. I remember the fear of the unknown and what it would mean for his future. I remember the feelings of being overwhelmed and the sadness that came with wondering if Sarah was right.

 After Sarah shared this with me, I went into work the next morning and sat down in the office of a trusted colleague who had a grandson that was diagnosed with autism. When he asked how I was, the first words out of my mouth were, “Sarah thinks Jordan has autism.” We talked, he listened and I went back to work grieving and eventually building a new normal, and a new dream.

If you and I were to sit down together, I bet you could tell me exactly when your child was diagnosed, where you were and how you felt. You could tell me what life has been like since then and about the people who were there for you in the beginning and who it is that still comes alongside you.  

You may still get a sense of anxiety and panic as you are in situations that bring back those memories. You may still be in that place of grieving and asking God those hard questions. That’s okay. Someday, you will be able to dream a different dream too.

Healing will come but we will always remember.  

“I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.”

 Ephesians 3:16-19 (NIV)

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

My Child Seems Developmentally Delayed, What Do I Do? Part 2

What do I do? How accurate is this? What does this mean? What can we do to help?

Last week I shared the first two of five principles that I have found to be true and helpful for parents  who find have just been given a diagnosis or who know something is not quite “normal” with their child and are in the process of testing or diagnosis. Parents who are struggling with the above questions. If you missed Part 1, you can read it here.

Today, let’s look at the last three of these principles.

3.     SELF-EDUCATE, RESEARCH, & PRAY. In today’s world there are a myriad of options, finding the best, or even a very good, one will require you to educate yourself and do some research. Of course, much prayer and asking the Lord for guidance, discernment and good options is critical!

4.     TRUST YOURSELF AS HIS/HER MOM. You know your child better than ANYONE. You may not be an expert on all things medical or psychological, but you are an expert on your child! Use the experts in medicine and psychology to help inform, guide, and treat your child, but if one path doesn’t seem to match your child or their needs, don’t be afraid to say no. Or if another path does fit, but you will get a lot of opposition from friends and family, pursue it anyway and be an advocate for your child. Hands down, YOU are his or her most important and often, only, advocate!

I do have one word of caution. As a parent, you can understand and feel deeply for your child in a way others won’t that can come with both pros and cons. The pro side is partly touched on in the previous paragraph. The con side is when a parent feels too much sympathy and enables the weaknesses of their child so that the child is not challenged to do hard things or pushed to the next level and therefore, the child’s progress and prognosis stops short of what the child is capable of, which ends up harming the child in the long run, instead of helping. So, beware of falling into that trap!

5.     THERE IS HOPE! While there is no easy fix, there is hope in the journey. God does have a purpose and a plan for you AND your child. I’ve seen my son and other kids with additional needs grow and develop far beyond where doctors, therapists, counselors, teachers and others ever predicted they could. Yet, even if they don’t, God is still there beside you every step of the way.

I love Sally Clarkson’s words on this subject, “I’ve written a lot…about the importance of accepting our different children just as they are, providing a place for them to be themselves, and appreciating God’s design for them. This is absolutely crucial – but it needs to be balanced with doing our best to help our children grow and move forward in their lives.”

Are you the parent of a child with additional needs? What helps you find this balance that Sally Clarkson mentions?

*List highly adapted from Different by Sally & Nathan Clarkson

About the author: Sarah is the Co-Founder of Hope Anew and has a background in counseling but the title she treasures the most is Mom of two boys. The youngest of whom has his own additional struggles.

My Child Seems Developmentally Delayed, What Do I Do? Part 1

What do I do? How accurate is this? What does this mean? What can we do to help?

As I talk to parents, especially moms, who have just been given a diagnosis or who know something is not quite normal with their child and are in the process of testing or diagnosis, these are the questions they come to me with most often. Their minds and hearts are in a jumble, so many questions, fears, and unknowns.

I remember being in that place and the confusion and consternation that swirled in my mind and soul. There are no simple answers. However, over the last decade, I’ve gotten to travel further along that journey and fight many a battle both within myself and to get the help my child has needed. While not all of those questions are answered even now, I’m much more settled – emotionally, intellectually, and spiritually.

No two children or situations are the same, so there’s never one right answer or process to follow. I have five principles of how to navigate this. Today, I’ll share the first two of the five principles that I’ve found to be true and helpful at this stage of getting help for our children.

1.     GET HELP! Do seek out help for your child. Don’t let fear, excuses, or denial (He just likes playing by himself. She just doesn’t show much emotion; that’s just who she is) delay you very long. Sometimes the sooner help is found, the more difference it makes in the long-term outcome for the child.

2.     GET ANOTHER OPINION. My son’s first pediatrician’s office told me he had Separation Anxiety. Umm…he was three weeks old and NOT separate from me. When one doctor, therapy or test doesn’t feel right to you or doesn’t help, try another one. I’m a firm believer that if Plan A doesn’t fit or work, there is a Plan B, C, D, E,…keep searching.

If you are a Mom or Dad in this situation, you may feel like you are carrying the weight of the world as you are dealing with so many unknowns and don’t know what to do. Next week, we will look at the remaining three principles that have been helpful for me personally, as well as for other parents I’ve talked with.

If you are a parent who has already walked this road, what was most helpful for you during this time?

*List highly adapted from Different by Sally & Nathan Clarkson

About the author: Sarah is the Co-Founder of Hope Anew and has a background in counseling but the title she treasures the most is Mom of two boys. The youngest of whom has his own additional struggles.