Maureen Webber is the parent of two children. Brian, who is 28 and has severe cognitive impairments and Anna-K, 26, a ceramist and graduate of Edna Manley College, Jamaica. After her divorce some 22 years ago, their father opted out of their lives so Maureen has solo-parented both of her children. She is a social/economic development and inclusion practitioner, managing, evaluating and designing projects which focuses on the inclusion of vulnerable groups. Maureen resides in Jamaica but for the past 2 years have been on an assignment in St. Vincent and the Grenadines. “I regret to say I really do not have hobbies,” Maureen shared. My mantra is, ‘Worship, Work, Workout’, but underpinning this all is being a parent and care provider for life. “Those three keep me buoyed up and content.”
As the parent of a child with a disability, have you felt socially isolated over the years? If so, how have you dealt with it?
I am socially isolated; it is not that I feel it. I live it. It started much earlier when Brian was young, there was first less time to ‘hang out’. People used to come to my home a lot to socialize, they came less as they felt uncomfortable, they felt sorry for me, did not know what to do. Thought and/or concluded I was unhappy.
The isolation I feel in the latter years is more around the fewer things you can do as he cannot be left alone, and it is much more difficult to find a care support person for a young adult male with severe disabilities, including being incontinent. But truth is, because of social media and the way I share our journey I do not feel as isolated.
Have I dealt with it? I think I defined it as my new normal. People spend a lot of time talking about what their children are doing at all stages of their life. When he was younger people could not understand my celebrating him feeding himself. When he is older and people realise the impact his impairments have on him doing things they appreciate the story more. So, I have come full circle. I am physically alone, with the exception of my daughter in the care and support, but more connected and less isolated than say 7 years ago.
What do you think the government in Jamaica can do to make sure parents of children with disabilities have the proper support systems they need? And specifically, what are some of the systems you can recommend?
A few of my ideas:
You cannot say every child can learn and not provide a space for everyone, despite their disabilities. There are people with disabilities who are never going to be able to work and will outlive their parents. This is a reality. Why then not do the following:
(1) Fund respite care services. Full time caring especially while working is draining. To end the potential for social isolation, a space to leave your child so that you can have time for you, now and then.
(2) Support for parents through grants, this can be guided by income levels, but understand that all need support
(3) An income tax reduction for parents who are caring for their child or young adult. If the government cannot provide what the person with a disability needs, give their parents space and more take-home pay to be able to provide for them
(4) No tax on savings or funds meant to support your child
(5) Provide real support workshops, coping skills, financial advice, networking etc.
How can communities be more supportive?
I guess in the times of old you would define communities as the geographic space and in that context, acceptance is the most important thing. For me, I am fortunate, I have lived in the same home with my son for the past 27 years. I also grew up in the house. My son is taken out on a walk pretty much every morning and my neighbours will WhatsApp and say how great it is or where they saw him. Recently, I am working on another island, and there is a group who communicate on WhatsApp and are on standby if my daughter needs any help with Brian. Today ‘community’ is larger, and I get the support that I need at this leg of the journey through my journaling our journey on Facebook. People would comment and lift me up. Some send inbox messages for advice and/or to just have a space to cry.
What will you say is one of the main public misconceptions about children with special needs?
First I do not understand and/or use the concept ‘special needs’ when I speak of Brian. Truth is, all children have special needs. The term is used if you are uncomfortable or seeking to be politically correct. Brian has impairments, in his case, cognitive and some physical. The public perception varies guided by the disability. So, for my son, because he is nonverbal and all the other challenges, they conclude he cannot understand you which is wrong. He cannot understand what you are saying, but he can understands you. Or, they conclude that since he cannot speak, and he cannot learn sign language that he does not communicate. Wrong. He does. You just have to listen with a different ear and heart.
How does having a child with special needs affect family dynamics, especially siblings?
We are not the same household as one without a child with a disability. Totally different dynamics. First, I was blessed with my son, then we both were with my daughter, his sister. I am not sure how it evolved but we became partners in parenting Brian, and she is younger than him by 2 years. For my part, I focused on ensuring that there was equal time for her, resources for her dreams. You must be careful about that, because if not you could become a dysfunctional household. She is devoted to her brother but also takes her own space and is firm with him.
Let’s talk dynamics. When we go on trips, Brian goes with us. Despite our best efforts, his No. 2 cannot happen before we take off. So invariably it happens on the plane. We immediately spring into action as a team. We check to see if there is a line waiting for the rest room. If there is, one of us heads to join the line, we wait for the signal that it our time. I enter, she stays outside, take out the sheet of plastic for us to stand on, take everything off. Then two knocks from the insider tells the person holding the bag that it is a messy one or it is moderate. The wipe up begins from the inside. Then a knock say a fresh set of clothes are needed, no knock means you can stand down we got this covered.
What are some of the things Brian thoroughly enjoys? Tell us a bit about him.
I often remark that I have two totally different children and not for the obvious reason. Brian is a person who enjoys the journey, Anna-K enjoys the destination. You put them both in a car, he is wide awake and either looking around at everything we are passing or stimming in contentment. Anna-K gets in the car and is asleep in minutes. When we get to the destination, Brian cannot wait to move on and Anna-K is happy we have arrived. So, Brian enjoys outings. Getting in the car and just going somewhere.
Brian does not really play or anything like that, no kicking of the football nothing, so we have budgeted for someone who takes him on special outings in addition to the usual trips to the store etc. that he would go to with us. The challenge since COVID is that because of his sensory issues, he will not put a mask on, no tolerance, so outings are reduced. And he so enjoys his 40-minute morning walks! Just know that you are walking at his pace.
Brian enjoys travelling, we have been to Washington D.C., Florida, St. Kitts, St. Vincent and the Grenadines, Trinidad and Tobago and all the way to Vanuatu and we are frequent visitors to the Bahamas. When his designated suitcase comes down, he knows a real adventure is about to happen.
Challenges and joys of being a parent of a child with a disability. Can you share a bit about that? What has having Brian taught you?
If I am honest sometimes, I am tired and I wonder how I will continue this journey because you do want to get off the train sometimes. But God has a way of showing up and showing me that what I thought was a ‘challenge’ was him presenting an opportunity for us all to grow.
Then there is indeed the matter of finances, it just cost more to give a child like Brian a quality life. I wish as I near 65 that I did not have to be working full time, but then I think about those who wish they still had to work to support someone who needed it, and I go back to my gratitude space.
As for the joys far too many. It is a joy that is in your soul, it does not mean that I have this happy face all the time, but I take comfort in what I feel in my soul. I know I have done well by him and by Anna-K, I know I have done what others thought was impossible. I am not filled with pride because of it, I am just pleased.
I have learnt to listen to the unspoken word, to celebrate the small things like the first time when he was just past year 4 and he lifted the spoon and fed himself that spoonful of rice. How could you not celebrate this? They said he would never feed himself. I do a happy dance whenever he takes himself to the toilet and sits there stimming quietly until he has his number 2 in the toilet. this does not happen all the time, but when it does, it is cause for celebration.
What is the one thing you hope other parents will take away from what you’ve shared about raising Brian?
Find the joy in it all. It makes the journey one of delight, learning and revelation. Remember that you have been elevated to a higher level, you have been singled out to do a great thing.
“On a day in December, I watched 2 boys and their parents next to me as they went through their meal here at Margaritaville and silently, tears flowed. By the time Anna-K rejoined myself and Brian, it was clear I was sad. But then, the present interrupted. Brian had a No. 2, which explained why he was restless. No time for thoughts about what could be. This is here and now. Armed with Brian’s backpack carefully packed for such moments, I got passed explaining why me and my 28 year old male were heading into the female restroom. 10 minutes later we emerged. There was a line and I aplogised to the first person in the line. She responds . . . “I have a cousin. I will tell her mother what I saw. Hopefully, it will inspire her to take her out,” the lady siad to me. I stepped away with more silent tears. They were now tears of joy . . .” ~ Maureen Webber