My Autism Story – Judy Nzisa – Mwangi

What is your name?

Judy Nzisa – Mwangi

How old is your child?

My son turns 5 years in a day or two. 13th May to be precise!

When did you discover your child had autism?

There was definitely something notably off with Myles as from 1.5 years but we hoped all would fall into place with time. At 2.7 years, we put him through early years school to see if he would catch up, especially on speech. It is when we came to note that the issue was way bigger. He was more aggressive, a loner, pacing all through, very anxious, emotionally unstable, coupled with other challenges that we had noted at home relating to gross and fine motor issues, and body balance. Sadly, the school did not help at all, as more intervention was required. Since I was on maternity leave spending a lot of time with him, it was easy to pick out that there was an issue that needed urgent attention. We then raised our concern with a pediatrician, and got referred to a Pediatric neurologist where we did a few clinical check-ups. We got to attend one of the clinics done by KISE after a few months, and this is where we got referred to a child psychiatrist. We got a diagnosis of Autistic Spectrum Disorder (ASD) with Comorbid Attention Deficit Hyperactive Disorder (ADHD) on 7/08/ 2019 when he was 3.1 years old. It was quite a relief since we had had it rough for some time to get to know what was up. Finally, there was an explanation of what was going in his life. This marked the beginning of a journey to intentionally support him.

How has your autism journey been?

Initially, the situation was hopeless, depressing, very lonely and it felt like I was mourning. It felt like all hopes and expectations I had for my son were just but a dream. The future looked bleak. I was slipping into depression but a still voice kept telling me, “Kazi ya Mungu haina makosa”. I remember the same voice asking me, “In which home should my son be deposited to?” Also, after seeing other cases more severe than my son, God helped me get out of self-pity, depression, and any sort of stigma from self or others. I am so proud of my son and I thank God every day since I know he is in control. Despite us going through the lows and highs of parenting a child on the spectrum, my heart is full of gratitude that I have him as my son and my hope is in God alone. It has pushed me to go back to school and learn more about Autism/ADHD and actually I have a keen interest in disability in children. I am hands-on, I am my child’s expert, and I keep learning. There is no time since my child got diagnosed that I am have not been learning. I keep comparing practices done in Kenya (Africa) and other continents. My current course list is An Advanced Autism Awareness Diploma course, ADHD Awareness Course, Sensory Processing Disorder, Understanding Dyslexia offered on an International platform. I took an ABA course- Registered Behavior Technician Course that really opened my eyes and of so many others. I just got admitted for a Diploma course in Special Needs at KISE and I look forward to this. Information on the internet again is very available and there is so much one can do. I am always ready to learn what other parents in the same space are experiencing and I take advantage of such opportunities. I am an advocate/voice for children living with disabilities especially Autism and ADHD which is a hidden disability. I am always happy to help where I can especially to parents who find themselves stranded not knowing where to start since I have been there. As my son turns 5 in a few days, I am happy with the progress he has made and there is so much hope. I have learnt to never compare him, and he is lucky that as a family we work towards supporting him. He has turned out to be a happy child, quite confident, and very playful, something he did not have before.

How has autism affected your life on a day to day basis?

Parenting a child on the spectrum can be work. My day starts so early and ends so late. Out of my busy work schedule, I have to set a few hours for his schoolwork, therapy sessions, and other activities. I also have a toddler which makes it a bit tricky but we manage it. I just can’t explain how though. We live a day at a time.

Do you do any kind of therapy? What are the costs like? Is the therapy helpful?

Yes, we do. I believe in intensive therapy while he is still young since he responds much better. We do Occupational Therapy- three or four times a week. We have a therapist who comes home and he has really helped us. The costs are way up there – Ksh 2500/- per session. Luckily my employer sorts this out, and I am very grateful. We also do Hydrotherapy at KISE, which is a government facility, at a subsidized cost. I love what they do and we never miss this. It has helped work on my son’s hyperactivity and sensory issues. The other therapies we do by ourselves to lower costs – like I work on his speech and assist the OT to achieve his targets.

How about school? Is your child in school? What is the experience like for you and your child? If your child is not in school, how do you keep him/her engaged?

Yes, Myles is in school. We do both home-schooling and a real school setup. The two are so important since the experiences are way different and enrich his life. At home, he is able to settle down for his academics and one-on-one therapy sessions while at school he loves being out with other children, and playing a lot, which has really helped to improve his social skills. He is less anxious unlike before. School is super for him. He looks forward to going to school and I am so happy he is settled.

What keeps you going and not giving up?

My son. As a parent, I know that God has given us this child for a purpose. “Jeremiah 1:5 – Before I formed you in the womb I knew you.” God’s opinion of him is just enough. There is no space for giving up or walking downcast.

Do you practise self-care? Do you ever get a chance to recharge?

I try to but some days can be tough for not just me but everyone at home. The whole family has a role to play in Myles’s life from the sister, to the dad, and the house help. We share roles so that one person is not overwhelmed but there are days he can really overwhelm all of us. For a parent, having time off when you have a child with special needs especially in the early years is an elusive idea.

What advice would you give parents of special needs children?

Yes, it is not an easy walk but do not give up and don’t be down for so long. Find a way to get a support system, so that you can in turn give the support your child. Remember your child is growing as you wallow in self-pity or keep complaining about why your child has a disability. Just do what you can to get things done. Educate yourself from the wealth of information available online and go for classes or seminar meetings offered by specialists. An empowered parent is a great resource to a child with special needs. Do something about your child’s education and get your child to a school where you are sure he or she is well taken care of. Do not hide your child just because they have a disability, let your child enjoy childhood experiences just like other children. Take them to church, go to the supermarket, take a walk, and let them go to school. Be ready to be your child’s voice. Value your child, who is a gift from God. Draw your strength from God and seek his guidance.

What advice would you give a parent who is scared of getting their child checked for autism?

I would strongly advise that you seek help early enough so that your child gets the support needed on time while still young. It is all about the well-being of your child and not about you as the parent. Your child comes first. It is not about what your relatives or other people will say or label you and the child. Your child is your responsibility hence your need to prioritize that.

What words of encouragement would you give a parent who has just gotten the news that their child has autism?

Jeremiah 1:5 “Before I formed you in the womb I knew you, and before you were born I consecrated you…” Your child is not a curse and is everything a good and perfect gift from God looks like. Pick up from there and take it right in your heart, then other negative voices around will not destabilize you. Resolve to work as a family to support your child where possible.

What quote or Bible verse keeps you going?

Jeremiah 1:5 “Before I formed you in the womb, I knew you, before you were born I set you apart; I appointed you as a prophet to the nations.”