A 19 Year Old Revelation

I've been a parent of a child with Special Needs for almost 19 years, and I just had a revelation.  I recently realized that even though I thought I had it "all together", I really don't.  I have some scars that are almost 19 years old and I'm just now learning how they impact my life and my mental health.  

This revelation was uncovered recently during a conversation with my therapist.  I started seeing a therapist because of some external adversity that I've had to deal with for the last couple of years.  This external challenge was amplifying my anxiety and panic disorder, and my husband and I thought that therapy would be helpful.  This past session we started really diving into things that cause me anxiety. She had me think about the times I feel anxious and what causes my panic attacks.  While panic is often stirred by an immediate crisis, my anxiety can rise at anytime. It’s something I can not run from most days. (Note:  Anxiety and panic disorder could be a whole separate blog post. I'm not addressing that here, but you should know that this is more common than you may believe, and professional help can make a difference.)  

My therapist has spent time getting to know me and what parts of my life have been difficult.  In my last session, I began telling her about Ben.  I told her about his birth and the way I felt the months afterward, how I responded to his diagnosis and  how I respond to him now.  As I talked I could feel my anxiety rise.  I began to have heart palpitations, stomach ache, dizziness, shakiness, tears and shortness of breath.

After she helped me calm down and relax, she made a pretty stunning observation.  She said "I believe Benjamin is the cause of your permanent anxiety.  You have PTSD and I think you are still dealing with the grief this has caused in your life.”

I was shocked.  I am thankful for him and I clearly recognize how he has blessed my life and others.  I feel equipped to help other special needs parents deal with a new diagnosis.  I even write about all the ways that Ben has expanded my life.  But, my therapist thinks that I have unresolved issues?  How could this be? 

In January of 2002 the diagnosis for Ben was determined about a week after he was born.  As I look back I see how my anxiety grew to an entirely new level: I could not sleep, I could not stop crying, and I could not stop Googling. I had to find answers to how to help. I remember every day living with a tightness in my chest, not wanting to see friends or even get out of bed. Always exhausted, completely lost, and totally overwhelmed. There was lots and lots of crying. I had anger at God. I had at anger at Ben. It felt as if the world was closing in around me. There were times I felt as if I couldn’t breathe, and thinking straight seemed impossible. 

As the months past, I began to understand more about Down Syndrome. I began to meet people who had children with Down Syndrome older than Ben and I thought I was gaining some solid ground against my anxiety. Ben was making progress in  therapy, and was incredibly healthy for a child with Down Syndrome, but with that came the overwhelming realization that we are in this for the long haul. His disability is a long term diagnosis. 

Now as I sat in the therapy it began to make sense. I have a special needs son.  A son who makes me question my parenting, one who will need help to live alone, a son who will never truly leave the nest. He has trouble articulating his feelings at times. He needs help with some daily living tasks. I find myself thinking of ways to help him become more independent but immediately feel like a failure when I am not consistent. I constantly clench my teeth, at times my chest feels as if an elephant were standing on it, and my heart hurts at times for my son who I know has a long life battling odds. I feel like I live  in a constant state of “waiting for the other shoe to drop” and can at times  feel the emotional spiral. 

 I know many special needs parents struggle with anxiety. Learning that my anxiety is essentially post-traumatic stress disorder is helpful.  I know that it’s relentless and traumatic in nature.  But, I know where it comes from now.  This awareness will also help me manage my anxiety.  I know that I can "fix” some things for him, but I can't address it all.  

Being a parent of an individual with special needs feels like you have to give the absolute best of yourself every single day.  We want to do the best for our children and be "on top of our game".  But, we also have to recognize where we need support.  I have a great therapist now.  I have also joined Facebook groups to find parents who “walk my walk”.   I can find answers in these circles with comfort and no judgement. I have a “tribe” of friends who love me and are there for me when days are tough. I have a church who loves me and more importantly love and include Ben. I am praying over time I‘ll get closer to “fixing” my anxiety the best way I know how. 

As parents, we tend to give our all to our children. However, if anxiety is standing in the way of the best version of you, it is imperative for you to remember to take care of yourself and to develop coping strategies. You are important. Your anxiety is real. Everyone needs some help at times.  Make sure to ask for help and be willing to accept it. 

Written by Leigh Ann Kaman

Leigh Ann Kaman is a wife and mom to three kids, one of which has Down Syndrome. She advocates in the special needs community and has started a ministry in her church for those touched by special needs. She is also actively involved in Capernaum, a ministry of Young Life for young adults with disabilities. Writing about her life as a special needs parent has always been her passion. 

Angels or One-To-One Aides

“I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.” (Psalm 121 ESV)

One of the great things about the summer for our kids is the opportunity to attend a camp, whether it is an overnight go-away camp or just a local day camp through a church or private organization.

It is, however, a challenge for our special needs kids because of the extra support they require, and it is a real blessing when they have a qualified one-to-one aide to support them there. But there is always a fair deal of anxiety, at least for me, since even when it is a camp with a special needs focus, you still wonder if the person will be a match for our child.

This year, our 11 year old non-verbal autistic son attended one week of a day camp at our local YMCA, along with some other special needs friends from his school community.  I thought it would be great initially, since I thought it would be a wonderful experience, but I didn’t relax until my wife let me know who his one-to-one aide was, his Special Olympics swim coach. This is a man who runs a wonderful program at the YMCA for our special needs kids with private swim lessons and also coaches and trains them to compete, and above all else he is a loving and a caring man.

The week my son attended camp turned out to be one of the highlights of our year, as every day we received pictures his coach would send us of him engaged in a variety of activities, including sports in the gym and on the field, swimming and games. The tears would fill my eyes as I saw the evidence of my son interacting with his peers in typical ways, not looking out of place or unhappy with his surroundings, but with huge smiles and the joy of a child at play. My favorite memory is the short video I received of him practicing to shoot a basketball in the gym with the help of another counselor, a skill he has really been trying to learn for sometime.

All of this would not have been possible if it wasn’t for his coach, who didn’t need to go out of his way to support just one student, but his love and kindness showed through when we needed him. It was a profound reminder that when we think something is impossible for our kids, God can make a way by bringing just the right people into our lives when necessary. Our prayers for him to have a good experience were not just answered, we were exceedingly blessed because he had the one person that fit him the best.

A week later when we were on a camping trip, I was playing with my son in the arcade room at the resort, and he was immediately drawn to the basketball shooting game way back in the corner. This is the type of game he had played many times in the past and I knew he really enjoyed playing, but many times in the past it had been somewhat difficult for him because he lacked the gross motor skills to do it easily. However as he ran up to the game now, he easily picked up the balls and pushed them up from his chest appropriately, the result being the balls traveled to the hoop and either rebounded or went right in, something that he was never successful at.

My mind immediately raced back to the video I watched with the counselor who helped practice the skill with my son repeatedly. That would not have been possible without the gift of our son’s very special one-to-one aide that showed up at just the right time and became the special “angel” we needed then.

I know there may be some activities or programs that he may not always be equipped for, but I also know that if we pray for help, help will come and we can trust that it will be better than expected.

Written by John Felageller

John lives in Northbrook, IL with his wife Elizabeth and his son Christopher (ASD), and is currently an Elementary Teacher at a Charter School in Chicago, IL.  He is a regular contributor to Key Ministry’s Special Needs Family blog, and is both a live presenter and on Key Ministry’s Facebook page. He coordinates a Special Needs Dads meet-up in his community and works with several other local Special Needs organizations that serve both parents and children.

Connect with John on his Facebook page here.

Help!

My friend’s baby had been sick, and since I am a nurse (who thanks to my own daughters needs owns a suction machine), I offered to swing by and suction her baby. My friend declined, but later, when I offered again she asked me to come. Once I had finished and her sweet baby was able to eat better, my friend said “I don’t know why I didn’t just say yes in the first place, she’s eating better than she has all day. I guess maybe I didn’t want to bother you or ask for help?”  

I think we can all relate to this. When did HELP become a dirty four-letter word that we aren’t supposed to use?  I was never taught to NOT ask for help, yet it has taken me a long time to get on board with the reality that I live a crazy life and I NEED help. 

Needing help often comes with some kind of shame, a fear maybe that others might think I was weak? Or maybe I believe that somehow, I got myself into “this mess” so I don’t deserve help? 

Regardless, if you are reading this blog especially as the parent of a child with special needs… YOU NEED HELP. You are absolutely worthy of help. And while our kiddos can be more challenging, exposing them to people outside of ourselves is a huge benefit to all involved. It helps our kiddos have other adults in their lives that can love them well. It helps us carry some of the burden. I know from experience that caregiver fatigue is a real thing. What a gift to the people who get to know our kiddos. It feels good to help those around us, and by saying YES to the offers of help, it builds community and relationship. Plus, our kiddos are amazing even with the hard, and the world NEEDS to know them. 

When someone asks what they can do to help me I sometimes don’t know where to start. It gets to a point in this chronic life that it feels like more work than relief teaching someone about our lives. But I promise that it can be worth it. And maybe that means I say YES when someone offers a meal, or I say YES when the neighbor asks if she can pick up my other daughter from school. When I find myself saying “I can do it” I am learning to pause and say, “Yes! I would love the help.” It might even mean me reaching out to friends and family and ASKING for help, because I have now realized I am worthy of needing help. 

I was so grateful to help my friend. I had the time to make it work, and I was truly blessed by getting to serve them.  

Written by Laurisa Ballew

Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood.