Recently, I was posed the question, “what is the most important aspect of the therapy program?” My response was immediate and the person asking was caught a little off guard by the response. My response was along the lines of “the most important aspect has been the weekly parent support group”. Observing the person’s reaction, I realized that maybe this was not the expected answer for some reason. I suppose maybe an answer along the lines of “the children sitting or standing or walking for the first time” or something similar to “the children gaining independence” or “the children being shown love and care” or maybe even “the children having access to something they have never had before”. While all these things are extremely important and a huge part of the therapy program, I have come to realize that the MOST important part is pouring into the parents (I will use the term ‘parents’ from this point on, but this encompasses caregivers and families as well). Giving support to the parents and showing the parents love has been the MOST important aspect of the program thus far. I could share many examples of this; however if I started writing all of them, I wouldn’t be able to stop – and I am not looking to make this post into a book. I’ll get back to the parents here in Haiti in just a little bit….
I sat for many nights wondering why my response was such a huge surprise. Why was it such a shock that support group has been the most important aspect of the therapy program? Then I realized that many times, the healthcare system in the US is missing a piece to the puzzle. Maybe I should narrow that statement down to focusing on the therapy world of the healthcare system…but I am sure it can be applied to other medical fields. I think that sometimes we get so focused on the patient and tend to leave out the parents and/or family. Of course, we educate the parents and provide home exercise programs and include them in goal setting and the treatment sessions, but we miss the bigger, much deeper piece. The bigger piece…the missing piece…is providing a strong support system to the parents – encouraging them, educating them, and empowering them on a DAILY basis. And this is not the whole “you can do it” attitude, but, rather, the whole “I want to know your struggles and hardships in caring for your child and more importantly, I want you to know that God loves and cares for you and He is with you every step of the way”. Yes, in the states parents have access to so much, but where is the daily spiritual support that is geared specifically towards raising a child with special needs? Where is the daily emotional support without having to pay an arm and a leg? It’s not always around due to being so focused on the child. Sure, there may be emotional and spiritual support during difficult times, but that support needs to be present frequently and consistently.
Here is Haiti this is a need on a much deeper level. Individuals, children, with disabilities are not accepted within their communities or even their families. The words that are used to describe this population translate as the following: ‘non-human’, ‘possessed’, ‘cursed’, ‘crazy’, ‘idiots’, and everything in between. It is common for parents (especially mothers) to be blamed for their children’s disabilities.
It is a heartbreaking reality that many parents give their child away or abandon their child. It is a heartbreaking reality that there are doctors that encourage this or even encourage the death of a child. It is a heartbreaking reality that it is a common daily struggle as a mom thinks, “maybe today I will leave my child somewhere”. It is a heartbreaking reality that when a majority of parents bring their child into therapy for the first time they have the intention to leave their child their. It is a heartbreaking reality that oftentimes I do not see a smile on a parent’s face for months. But I will be the first to tell you, that it is a God thing when I do see that smile.
That is just it. It is a God thing. God is doing amazing things in the lives of not only the children receiving therapy, but the parents of these children. This is why support group has been the most important aspect of the therapy program. Through this group, the parents are provided a safe, nonjudgmental place to openly discuss daily struggles. It provides a place for parents to receive education on diagnoses, therapy, mental health, etc. It provides a place for open discussion of voodoo and cultural beliefs surrounding the disability population. Most importantly (and I must say the favorite amongst the parents), it provides a place where they hear about God and what the Bible says about disabilities.
There are many group sessions that have been extremely powerful and will forever be embedded in my heart –
The group session where a mom came to group for the first time and initially looked petrified, but left in tears because she never had talked about her child and had people actually listen and smile and tell her that her child is loved by them and God.
The group session where parents went around and shared stories of what people say and do to them and their child – some specifics are much to difficult to share – and witnessing relief and hope on parents faces after sharing and getting out stories that they had never spoke about before.
The group session where a parent heard for the first time the truth about God’s love, mercy and grace and even through her tears you could see her eyes light up.
The group session where a mom stated she did not want to attend group that day because she had decided the night before that she would leave her child somewhere the next day even though she dearly loves her child…but then she said something told her to come to group and after diving into a few Bible verses she fell into tears saying that she was so glad she attended group and she was given just enough hope to hang on for another week.
I could go on and on. But the reality is, supporting the parents has been the most important piece of the puzzle to developing a therapy program. For some reason, God has placed me on this journey – I’ll be the first to tell you, I am not the best at this nor will I ever be and even though it confuses me sometimes, God has put me here and for now He is telling me to pour into the parents and love them as Jesus loves them.
