Have you ever seen an autistic child in the store having a difficult time and asked why that parent had “the nerve” to bring their child out? Or seen a child that was a little bit different participate in an activity with your child and wish they would sit down, because they move too slow? Perhaps you’re on the opposite end of thinking – maybe you see these things and you want to help, but you’re not sure how to help. You don’t want to be offensive when you offer solutions and you’re not quite sure how to go about suggesting different approaches.
It gives me great pleasure to share this woman's story with you! I can appreciate and learn from her honest perspective as the parent of a child who experiences the world differently. I want to publicly thank her for being brave enough to share her story! Allow me to introduce to you Ms. Nicole Bryant...
When the question, “What is it like being the mother or a special needs child?” was posed to me, I wondered how I would be able to fit it in one paper. Well here goes nothing....
I am a mother of a nine year old little lady, who has been diagnosed with ADHD and Developmental Delay. If that doesn’t seem like a lot - I am very thankful, considering that she was born at 24 weeks and weighed 1lb 2 oz! I was told that she would not make it 24 hours! Here I am 9 years later and by the grace of God alone I still have my little firecracker! She was considered a “micro preemie” because she was so tiny. I named her Imani which means faith in God! This was exactly what I needed for this journey.
She stayed in the NICU for the first 3 months of her life. I only left her side for about 6 hours at a time to go home to get rest. Initially I was scared, but that soon changed to fighting and praying. I prayed constantly! I read Bible verses over her constantly! I read books, sang and learned so much about everything that involved her - even the doctors, nurses, and therapists were impressed! I was told that she was prone to get more infections than even a regular preemie, but thanks to God she didn’t even have one infection during her stay!
Imani’s time in the NICU gave me more faith and hope in Christ than ever before in my life! God showed Himself mighty with her life! Even the NICU staff called her birth and stay with the hospital (without any infections) a miracle! Three months in hospital was successful; however, it was only the first of many hurdles to come. When she came home I was ecstatic and nervous at the same time! Even though I was a mother 3 times prior to Imani, we had done great in the hospital - how would I be home alone with her? I was unable to nurse her for several reasons, one of them being that she had to do half of her feedings with special milk for preemies.
Well it wasn’t as bad as I anticipated. She had more doctor appointments than usual, which turned out to be helpful reassurances! Soon I was set up with an Early Intervention (EI) team. This is a group of services for children 0-3 years. These services include: Developmental Therapy, Speech Therapy, Physical Therapy and Occupational Therapy. The different services offered and the amount of time are all specific to the child's disability and age.
As with most things, the sooner the services get started the most beneficial to the child. When Imani was 11 months, we moved back to Oak Park, IL from Tulsa, OK to be closer to my parents. My parents have been a great support system for me! Imani’s EI services were transferred to an Oak Park team facility and I loved the team!! Sure, I had people coming to my home 4 days a week (between four different people) each for an hour a day, but they just became a part of the family. They often gave great advanced, answers to any questions I had and so much more!
I was so grateful for the wonderful support system I had from family, friends, and therapists. My “saving graces” in that season were my faith in God, this support system and seeing Imani blossom so well! When Imani turned 3 years old, she aged out of EI and I had to get her signed up for Preschool in the Oak Park school system in order to continue receiving services. I was sad to know that we wouldn’t see her old therapist anymore. I was concerned about how she would do in a school setting, even though she would only attend for half a day. It was yet another group of people that we would have to get to know …and once we got close to them we would have to leave them as well.
In preschool, Imani was placed in a classroom of 6 students. She was the only girl during the first year. At the start of her second year, two girls joined her class. Imani did really well in preschool! In fact, she did so well that I got my hopes up a little too high and wanted her to mainstream by kindergarten. Once she was ready for kindergarten, I was told (which I already knew) that she would be in a special needs class.
That’s when it hit me... My baby would be on the “short bus” which everyone including myself always talked about; my baby would be one of the “slow kids.” Then suddenly it didn’t seem so funny anymore. She had successfully overcome her hospital stay, EI services and preschool, but kindergarten brought a whole new level of “excitement” for lack of better words. Imani was absolutely out of control!
After a trip to the neurologist, I quickly learned that she had one of the worst cases of ADHD he had even seen! And this man had been in practice for over 30 years! I had to learn to deal with her taking medication, which I was totally against! However, I felt like I had no other options… Since her first visit to the doctor, her dosage has been increased from 5MG to 10MG; from twice a day to three times a day if necessary! While I am still not fond of the meds, I understand she needs them in some cases. I have studied her. Now I know what settings she needs to take them and how often she needs them. For example, I know she needs it for school and places like the store which she gets overstimulated from so many things. However, if Imani is at home all day with her siblings and myself - she may not need it at all OR she may only need it once in the morning.
With the medication, Imani’s behavior got better in school and she was able to stay focused more often. As she continues to grow older her services are decreasing. She has been mainstreamed for all her classes except math. Imani still receives Occupational Therapy, Speech Therapy and Social Work services once a week. Imani’s reading level is off the charts! She currently reads on a 7th grade level! In math Imani struggles with grasping the concrete facts it has to offer, because she is so abstract in her thinking.
As a parent, I have learned her strengths/ weaknesses and I am starting to understand a little bit of the reasons why she does certain things. I know that socially Imani doesn’t “fit” well with children her age. Due to her Developmental Delay, Imani is about 2 years younger than her fellow counterparts. When she is at school (even though she typically has all boys in her classes - which we have gotten used to) she is fine. I start to get concerned with other places, such as daycare and church. Honestly I think it bothers me more as her mom than it bothers her. Imani is a loner and she could care less what others think of her 80% of the time!
As a parent it bothers me that girls her age really don’t want to be bothered with her. They exclude her from their “cliques” or they simply tolerate her for a while. It also bothers me a bit that it doesn’t just stop at children, but parents don’t invite Imani to come play or include her in their play dates etc.
I truly believe this affects me more than it does her. Imani and I have very good communication between us and she never mentions that she feels slighted. If I ask her how she feels about it, she says that they are her friends and leaves it right there. I have learned to accept it. I also know that Imani’s interests are different than most girls. She love books, and animals, not purses and dress shoes. Imani has very little in common with most girls and once the common threads are gone – she is fine with being alone in her imaginary world or reading a good book! Imani has and is still teaching me so much - not just about her but about human nature period! Parenting a different child makes me have more compassion on others, because you never know a person's story to make them act the way they do. I’m learning patience, because there are definitely times when she works my nerves!
I am so grateful for my wonderful support system, my parents, grandmother, aunts, uncles, little sister, friends, church family etc! Imani’s life has also affected her older siblings; my oldest daughter now works in a job working with special needs adults and children. My oldest daughter also attends school to become an Outdoor Recreational Therapist. I constantly hear stories from teachers and other school faculty about how my oldest son plays with, helps and sticks up for children with special needs. My youngest son will stick up for his sister like a bodyguard!
As we all continue in this journey of the life of Imani, we are learning not only about her and how to deal with her disabilities. It’s teaching us how to deal with people in the world around us. It’s teaching me that it’s okay to be afraid and have concerns. It’s okay to get tired and need a short break. What is important is how I handle things. When I need a break, I go to my support group and allow myself the freedom to take a break. I will continue to trust God and watch His miracles in my daughter's life! I will continue to live, learn and love - not only Imani but my fellow brothers and sisters in the world. All I can do is thank God for the opportunity to be the mother of a special needs child and trust that I have enough strength to get through it!