“…My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
2 Cor 12:9 (NIV 1984)
There is this familiar feeling that sweeps over me at the most unexpected times. It used to be crushing and stabbing. Now, it is just a twinge to remind me of God’s ever surpassing grace. It is the realization that my original plan was not God’s plan.
We all struggle with this realization at some point in our journey with God. For the special needs parent, it can be a cycle of grief, joy, and grace that few understand. I am hoping that sharing a few pieces of our experience would give other ministry leaders insight that may help you, and the biblical community you lead, to embrace the gift of journeying with special needs families.
I have five totally amazing children, ranging in age from 24 to 8. They are an absolute gift to me – every one of them. I emphasize that because, as any parent will tell you, every child is unique and brings their own strengths and challenges with them to your family system. In our case, I emphasize this all the more because our two youngest children have a variety of ongoing special needs between them including Tourette Syndrome, progressive sensorineural hearing loss, sensory processing disorder, dyslexia, specific learning disabilities in written and expressive language, reading, and math, dysgraphia, late effects of a mild traumatic brain injury, dysthymia, suspected high functioning autism (the doctors keep debating this one), and all the self-regulation and self-image issues that accompany all of these. Just for kicks - throw in that our third child also has Tourette Syndrome and that the other two also have recognizable motor tic disorder. While, with the first three children it does not affect them much, it still produces a lurking vigilance within me with every odd movement wondering if it burst into a full-blown episode that could debilitate them. Add onto that an extra tidbit that I also have moderate to severe progressive sensorineural hearing loss to deal with on a personal level.
Is your head spinning yet? I know mine is!
This was not my plan.
God, how could this be your plan?
My husband and I found ourselves quite unexpectedly on this journey into the world of special needs once our two youngest boys, Peter and Andy, started to fall behind developmentally. We kept just slowly moving forward like everything was fairly normal, thinking they were just a little behind, a little quirky in their personalities maybe, and that they would ‘outgrow’ it if we just waited it all out. We did what needed to be done. Early intervention screenings, speech therapy, and never missed a well-child checkup. The pediatricians did the same. “Don’t worry. They will likely outgrow this stage.” Or the familiar line – “Don’t worry they are not talking much. You have five kids! Their siblings are talking for them.” How do I argue with that?
Then when Peter hit first grade (age 6) everything came to a screeching halt. It became obvious that he was not comprehending the school work the way others were, even the sounds spoken. I became very suspicious of how he was processing information. I am a nurse and systematically worked through my checklist of things. Pediatrician. Teachers. Optometrist. Audiologist. This is when everything came crashing down. It is a LONG story – too long to give every detail. I will give you highlights. When we hit the fourth audiology specialist she sat us down and explained in detail what she felt was going on with Peter’s hearing and processing. The news she gave us was downright devastating (I literally went home and became ill.) She also added that he needed an MRI to rule out any kind of brain tumor blocking signals. Shortly after this, while waiting for his MRI date, Peter started having all these strange movements and they kept getting worse every day. My boy went from “normal” to jerking all around within days. We live in Montana and literally no one knew what was happening with him. This started our journey for the past 3 ½ years. We have traveled thousands of miles, hours and hours in the car, all over Montana (and let me tell you – it is a big state!), Utah, and even to the far eastern end of South Dakota (a stone’s throw to Iowa) till all Peter’s diagnoses were sorted out. We have had multiple specialists deciphering differing opinions, and multiple misdiagnoses along the way.
In the background of all this, we saw some similar and some completely different issues with our son Andy as well. We knew we would have to start a similar journey figuring out Andy, but overall, our family had found some kind of “new normal”. Then one day, literally out of nowhere, our daughter, Mary, started having a vocal tic where she would gasp as she breathed inward. It became severe within a matter of hours, and soon was accompanied by severe motor tics. Mary had long had small motor tics that were never really an issue. She was a healthy, active, normal 7th grade girl. In a matter of days, she became debilitated by the tics. She could barely eat without aspirating as she gasped in every 3-4 seconds, and her jerking movements were so severe that we were afraid she would hurt herself. We immediately got her to the pediatrician, and consulted with the pediatric neurologist (who is five hours away – remember it’s Montana).
Mary was started on a medicine to try and help reduce the tics. If you are not familiar with Tourette Syndrome (beyond the familiar, but not so common in reality ways it is portrayed on TV) let me share with you that it is a neuro-biologic, neuro-developmental, and neuro-psychological condition with a genetic component. The specific genes have not been fully identified yet, but research continues to identify the exact genomes. There is no cure for Tourette, and there are no medications that are labeled specifically for Tourette. All medication strategies are “off-label” ones that physicians have found can help with the tics. Coprolalia, or swearing tics (often seen on TV shows as a joke), thankfully only occur in about 10-15% of cases of Tourette. (You can find out more about Tourette Syndrome here.)
The medication helped slightly with the tics, but the side-effects made matters worse as she was dizzy, weak, and had headaches from it. Mary was devastated. There is nothing as heart wrenching as holding your daughter while she cries and begs God to take away something you know you cannot cure, and no doctor can cure. It is not a disease that would kill her. I knew that, and believe me I was thankful because there are so many precious families that have that struggle to cope with as well. That did not make Mary’s anguish in this situation go away though. Nor does it for my boys when they cry in my arms on their particularly bad days either. As a parent, you naturally want to fix it. I cannot fix this. I cannot take this anguish from them, and that crushes me.
So where is God in all of this? And…where is His church in all of this?
I can say now, having walked in this for some time, that God is all around us, holding us, guiding us, reassuring us, and teaching us.
My husband is a Pastor and we moved to Montana about 6 ½ years ago following the Lord in ministry. We seriously almost quit ministry during this time thinking we had to go back east to get access to the care our children needed. God stopped us at every turn; he slammed shut every door, and gave us no peace even when we tried to pry doors open with what we thought in our minds would be the best solution. When we surrendered to him and his will, conceded that yes – you know best Lord – then he gave us peace. I have never regretted our decision to stay here, and have become quite the organized, long-haul, car traveling mom! God has been way ahead of us every step of the way. With each diagnosis that didn’t seem right, God would give me a leading of what to do next. Now I know, with no doubt, that with every single thing I can trust him. I can trust God with leading me to the right specialist, helping me with school IEP plans, putting amazing teachers and school administrators in our lives, handling the times the kids are distraught, helping me cope on bad days, and giving provision for the ever-mounting expenses that accompany all of this.
For us, our church walked this journey with us. In the beginning of it we tried to hide what was going on with the boys because the behaviors that accompany their challenges just appeared like “bad” behavior. Once we hit that crushing point with Peter at age 6 though, we knew we needed our biblical community more than ever. We were so thankful that they came on this journey with us. They prayed with us and for us, wept with us, cared for us in the very dark times, rejoiced with us in the good times, learned with us as answers were found. They became a part of our special needs family. Our church congregation is very small. For the small size of our church, it is unreal how many special needs children are in our congregation. My husband and I joke to each other that it is like we attract special needs families! It is true though, maybe because they see we understand something. We do not have tons of resources. Our church building is very old and not even fully handicapped accessible in all areas (something that totally grieves us, and we are working on it slowly with any finances that become available) Despite that, we have been able to connect on a level of unique understanding with other families. Our kids are not all the same. Their special needs are not the same, yet we all share this common journey.
Our COG leadership was not afraid to embrace the situation we found ourselves in once we opened up about everything. In those early years, when we did not realize what exactly was going on with the boys, we did face some judgment that they were just poorly behaved (or that was our perception). Once we realized what was happening, and became transparent with our leadership, that judgment feeling disappeared entirely. Knowing the situation is the key. People cannot understand what they do not know. You must educate people about these challenges. They embraced our family entirely. They prayed with us, and wept with us, and celebrated with us too. They also gave some tangible help with finances for some of the things Peter has needed along the way. Most importantly, they were not afraid to pray for guidance when guidance was needed, and healing too. Our youth director did not shy away from praying for healing at a regional event, and it brought Mary some temporary remission. Then about a month later, at our Montana Camp Meeting last year, when Mary was in the depths of her devastating bout of Tourette’s she went up for prayer. Some leaders may have chosen to avoid such a touchy subject. After all, there were plenty of people praying over Mary at that moment, us included. Our Regional Bishop though was not afraid to pray with everyone for Mary’s healing in that forum. We are so thankful for his leadership!
God did deliver Mary from those devastating tics that very night, that very moment! I believe the Lord took that from Mary because it was too much for her. She still has some small things, but nothing like before. She regained her strength in the months that followed and has returned to her “normal” life. I believe God showed all of us what he needed us to learn through Mary’s struggle, and he is going to use that experience in her life in incredible ways. Mary already has shared what it was like for her to experience that in a video we made for school personnel to understand Tourette Syndrome better; this helps her brothers in a unique way because Mary was old enough to express things they could not. She believes God wants her to become a doctor and has begun planning her high school course selections with a medical prep college program in mind. She also shares her experience with how the church responded to her experience in this video. Our boys continue to struggle, but we know with God they will overcome and do amazing things.
So back to explaining that feeling that sweeps over me. It is the twinge of pain of losing what I expected our family would be like, what our life would be like, what our kids would achieve, what our normal would be. The worry of how they will function in society as adults, and if they will be able to live on their own one day. Unexpected things that make me twinge can be anything. It could be walking into the school and seeing all the neurotypical kids ready to practice a school play, knowing that my boys just couldn’t handle it. It could be swiping through social media with everyone posting their children’s great academic achievements of the quarter (and no I don’t expect you not to – I do it too for my more neurotypical kids). It could be glancing out the window and seeing my kid in the school yard standing alone. It could be sitting in an IEP meeting hearing the reality of where my kids are in their school situations. It could be (and has been) sitting at the T-ball game and seeing all the other kids trying to play the game while my boys are in the outer part of the field making dirt-angels (or snow angels – remember it’s Montana) and picking at blades of grass. It could be sitting in the movie theater, all having fun, and then when it gets quiet looking over at the boys and hearing and seeing them tic. It could be enduring the after-school inevitable meltdown because they have held it together all day. It could be in church when I see my children’s leader frazzled by the challenging time she had with the boys that morning. It could be when my husband texts me in the morning and says, “celebrate cheesy eggs with me” (meaning that our one son with sensory food issues actually ate something different, and a food that was touching another food).
It's the twinge. The thorn in my flesh. I am thankful for it now. I am blessed beyond measure.
Why? Because His grace is sufficient.
My perspective will never be the same.
That is the gift these special boys bring to everyone who dares to journey with them, and with us.
I will never be the same.
If you dare to have your church embrace special needs families, know these facts:
His grace will be sufficient.
Your perspective will never be the same.
It will all be a gift to your biblical community.
Dare to do it.
Journey with them. Cry with them. Celebrate cheesy eggs with them.
You will never be the same, and you won’t regret it.