By: Olivia Stallings
I was torn about sharing my story with the readers of Bliss. What you are about to read is not something that is easy for me to discuss. In fact, this is the first time I am sharing my situation with my three children, Brian, Evan, and Justin. We all have secrets, and people mainly keep them because of shame or fear of what others think. I’ve kept this secret for none of those reasons, but to protect my children.
I gave birth to my first son, Brian, the cutest baby I’d ever seen, in January of 1997. I had him at 18, and I was scared to be such a young mother. Like most 18 year-olds, I wasn’t really stable in life, but I knew I had to provide a stable life for him. As parents, we grow as our children grow and, let’s face it, there is no handbook that can accurately describe all the trials, joys, and tribulations you go through as a parent. As Brian grew older, I what any loving parent would do by exposing him to things that would nurture him and help him to learn to be productive.
As a single mother, you don’t always know what to do for your child, but I was determined to make a wonderful young man out of him that would be productive and contribute to society. By the age of four, it was obvious that Brian didn’t fit the term normal; he was different from other children in his age group. He was everything a mother could hope for in the sense that he listened to every instruction given to him. He was extremely kind to others and, to date, the only child that has never caused me any trouble. But I noticed things in him that were different, from how he played and how he ate to how he learned.
Like any concerned parent, I did whatever I could to ensure he was properly cared for. I thought my best option at that time was to put him in private school. I figured, if he was surrounded by other “normal” children, he would get the assistance he needed and would catch up to his peers academically. At the time, my income didn’t meet the requirements of the private school’s tuition, but I did the best I could. It took me seven years after his enrollment to finish paying off the tuition debt.
After one year of private school, my son’s comprehension skills didn’t improve, and I sought other resources. I researched childhood developmental delays and decided that public school would be best for him. Public schools could provide an Individualized Education Program (IEP), and they would cater to his delays and ensure he developed along with other “normal” peers of his age.
I attended every IEP meeting, even scheduling meetings with teachers and school counselors when his grades dropped. Because he didn’t have any behavior issues, he had many teachers willing to help him succeed. But I noticed everything was harder for him. Reading comprehension, writing, and math – everything academic seemed to challenge him in ways that were difficult to watch as a parent. Even though he was friendly, he didn’t make friends; he didn’t have the social skills needed to engage his peers in conversation. I was saddened by the state of my son, but I was determined to give him what I thought a “normal” life should be.
By the time Brian was seven, I had another son by the name of Evan. Evan had a dynamic personality and easily made friends. There were both differences and similarities in watching them grow up. Evan had an extreme temper and would become emotionally distraught over the simplest of things. Unlike Brian, he often got in trouble. But both boys shared their struggles in academics. I knew that he might benefit from having an IEP, and I wasted no time in ensuring he would have one in place by the time he started kindergarten. Evan’s temper was his great challenge and, unlike his older brother, he made it more challenging with frequent behavior issues at school. His reading comprehension, writing, and math skills also lagged and, for the second time, I found myself going to countless conferences and IEP meetings.
When Evan was six, I had my third son, Justin. Justin displayed issues much earlier than my two older children. Indeed, by having Brian and Evan, I noticed things earlier in my parental journey and was on alert with trying to recognize any difficulties in his development. But by the time I had Justin, I was exhausted from my parental obligations. At one year old, Justin hadn’t started speaking yet, and I was concerned. I took my concerns to his pediatrician, who informed me that, “He’s a boy, sometimes they do things slower than girls. Don’t worry.”
I am proud to say that I listened to my parental gut. If you’re a parent, you can relate. It is your inner voice that tells you something is not right. I went to an Ear Nose and Throat (ENT) doctor and got my son evaluated for a hearing test. I think that day is the day I started to really understand that I can’t blindly rely on resources to assist my children in being “normal,” but I must trust my parental gut and be my children’s advocate in everything until they become adults.
The ENT doctor explained that my son was not hearing, and that Justin had a lot of fluid in his ear. The doctor also said that, if the fluid were drained and tubes implanted, the situation might be corrected. But by then the damage was already done, and this was only the beginning of our journey. We got the tubes, and I started to investigate speech therapy. Justin, now four, will be going for another hearing test this month. The spectrum which I find myself in has been a long journey that I simply can’t put into one article. However, I want to assist other parents who may feel their child is not “normal.” Justin has been in seven daycares in the last 12 months because he can’t be among “normal” children.
Brian is my oldest. He’s 17 now with Asperger’s Syndrome, ADHD, short term memory problems, and Lyme disease. He was medically diagnosed with autism a year ago. Neither the school nor the teachers assisted me with this diagnosis, and it was only after I sought out assistance for myself that I was able to give him the help he needed.
Evan is my middle son, and he will turn ten in May. He has a learning disability and ADHD. The school system did not help me with assessing his challenges either.
Justin is my youngest son who just turned four, and he has ADHD and is currently being evaluated for any other disabilities. Again, I was wholly responsible for ensuring he got the treatment he required.
These three young men who I have been blessed with are what I consider my spectrum. They are a rainbow of differences and energy and life. How I figured out all the nuances of this spectrum is a long story within itself, but I want to help other parents. When I thought about sharing these details, I hesitated because no one is fully aware of this aspect of my life. If you were to meet my kids, you wouldn’t assume there was anything wrong or different.
A very fixed routine and involvement with activities helps them with their development. While most people I know consider me a good mother, they have no idea that most of the things I do, I have to because of the spectrum of my kids, and my sons require organization and consistency in order to cope with the world they live in. The hardships I’ve endured in the last 17 years while raising my children could be a series of books and simply can’t be described in an article. The frustration of dealing with the school systems and all the trial and error I have gone though is not only hard to explain, but something I never thought I would be able to share with others. How do I explain to people that my kids are not what others would consider “normal?” Then I thought, I have to share this story with the readers of Bliss. I have to tell other parents about the signs and the resources, or other kids could get lost in a system with no hope of assistance or coping mechanisms. Not to mention the financial hardships I have gone through trying to help each of my children.
There is plenty of information on autism and the various discussions surrounding the different spectrums, and you may find, like I have, that no one thing fits the description of your child. But I can’t reiterate enough that, if you think something is wrong, then something is indeed wrong. The most important thing as a parent is to trust your gut and know that it is okay to go for a first, second, and even a third opinion. Never give up trying to ensure the best life possible for your kids.
If you think something may be a challenge for your child and you want to seek help, start with the following:
Breathe – Take a deep breath. All parents loves their children, and no two children are alike. So relax and know there is no such thing as normal. Even though your child may appear to be different than others, your child is different for a reason, and it doesn’t mean they don’t have anything positive to contribute to society.
Communicate – Speak first to your pediatrician and, if they don’t hear your concerns, consult another one. I had to go through two and am still not satisfied. If you choose shame over your kids’ wellbeing and do not talk about your situation, no one can possibly help you. The more I opened up, the more resources I have found. Again, no one is really normal, so don’t worry. If you feel overwhelmed, go back to step one as often as you need to.
Physical & Psychological – I learned that not everything can be dealt with through the school and, although a good school will do what it can to help your child learn, some things are either physical or physiological. Remember my oldest son, Brian? Many of his challenges were physical. Yes, he had an IEP in place, but he also couldn’t remember things just told to him; he had a hard time focusing and, although he had had no behavior issues, he struggled in school in many ways. He constantly got in trouble for falling asleep in class. And, so it doesn’t take you 16 years to figure things out, I will tell you I wished I knew that an IEP wasn’t enough for him. It wasn’t until he turned 16 that I thought to get him a full physical, and from that I learned he had Lyme disease. One of the side effects of Lyme disease is drowsiness. It wasn’t until I decided to get him a psychological evaluation that I learned he had Asperger’s, which is why he was socially different, had very few interests, and was an extreme introvert. It wasn’t until I went to a psychiatrist that I learned his ADHD could be treated with medication.
Remember Justin? If I didn’t take him to the ENT, I wouldn’t have known that he couldn’t even hear me for the first 12 months of his life. This is why he couldn’t speak to me. Had I not trusted my gut, I never would have been able to get him speech therapy. I was able to help Justin into an evaluation sooner because of my experiences with his brother, Brian.
Look for signs – No one likes putting labels on their child. Understand that I am a single mother of three, and I have already fought against various stereotypes and labels just to raise my kids. But don’t ignore indicators and assume everything is just a part of how that child is developing. There are some things that are real concerns and real issues. At the least, you should check them out. I will share with you the major signs common among my kids:
- Speech Delay – although they all have different spectrum issues, they all shared delayed speech. Start with communicating your concerns to their doctor and, I can’t emphasize this enough, get their ears checked out by a specialist. If I delayed this by listening to the first doctor, my four year-old would be permanently deaf right now.
- Social Skills – let’s face it, most toddlers don’t like playing with other toddlers. But what I noticed with all of my kids was that they were extremely shy or mean to other children. There was no happy medium with any of them. Expose your kids to play groups and see how they interact with other children.
- Comprehension Skills – look at how your child holds a pencil, how well they listen, and how well they are able to complete a task. ADHD is real and can be a challenge for anyone. Not everyone is just hard-headed or incapable of following instructions. I’m no expert in the matter but, after 17 years, I can say that I am a consistent parent who is able to lay out the rules and ensure they are followed. If your kids simply cannot follow instructions and you notice it is not intentional, it may possibly be ADHD. It doesn’t hurt to check.
Find Resources – Had I known then what I know now, I would have saved so many tears and so much money but, in writing this article, I am reminded that maybe I went through it all just so I could help someone avoid my mistakes. Know that the school system cannot medically diagnose your child with any issues, and yes – autism, ADHD, and ADD are medical issues. Getting your child an IEP is important, and it can assist with any learning disabilities. This doesn’t mean your child can’t learn, this just means your child learns differently. Look for your state resources before you start contacting various specialists. After 17 years, I learned that most insurance plans do not cover medical issues such as diagnoses for ADHD, ADD, or autism. However, most states have free resources for kids under the age of five to help with their evaluations. Once a child is diagnosed, they can start to receive medical assistance. And even though your child’s insurance may not cover it, you now qualify for Medicaid and long-term care depending on your financial situation.
A quick recap:
- Trust your gut.
- If your child is under five, contact the social services for your state and start discussing getting your child evaluated. They can assist with speech therapy and learning disabilities by assigning your child a specialist at no cost to you.
- Schedule an appointment with your child’s doctor to get a complete physical, blood work analysis, hearing exam, and vision exam.
- If your child is of school age, contact your school about getting your child evaluated for an IEP. Tell the school your concerns and become involved. As a single mom, I couldn’t always take off of work. The school will be able to assist you by doing conference calls that you can easily participate in during your lunch breaks.
- Contact your health insurance provider and find out what is and what is not covered. I spent over $20,000 last year in medical expenses. Nobody should go through what I have been through.
- Contact your state and apply for long term Medicaid. If you child is not faring well in school or daycare, you will need this. There is usually a waiting list, but it is a free service to you and your child.
Now let me reintroduce you to the spectrum of my three men:
Brian is now 17 and taking medication for his ADHD, which helps him stay focused and awake in class. We’re currently looking for an infectious disease specialist to assist with his Lyme disease. Overall, he remains a very well behaved child. He’s happy to know about his diagnosis and is willing to work toward compensating for his shortcomings while realizing that we all have shortcomings. Confident in his future, he has used his Asperger’s positively and will take a social skills class during his senior year. Now that he is medically diagnosed, he can benefit from extended high school assistance until the age of 21. Most kids with Asperger’s have one interest and excel in that area. His interest is animals, and he is looking into becoming a zoologist or biologist. He is also looking for summer employment and exploring future college opportunities. I’m hopeful that his future will be bright.
Evan will soon be ten and is working toward managing his anger and understanding his ADHD. He makes a conscious effort to behave and focus, and we are currently looking into other alternatives to help him to continue to strive in school. His teachers and IEP have adjusted and accommodated him in his writing difficulties, and he now uses an iPAD for all writing assignments and is doing better than expected. I am hopeful that his future will also be bright.
Justin is four and is now receiving in-home care to assist with his potty challenges, developmental delays, and his communication delays. He is scheduled for a hearing test, and we will await those results to determine the next steps. He’s blessed in that all his challenges were discovered early in life, and we can create a productive mitigation strategy for the years ahead. Again, as with all my sons, I am hopeful that his future will be a bright one.
As for me, my name is Olivia and I am a single mother of three boys, who I refer to as my three men. I feel better now that I’ve shared my story with you. I’m now looking into Medicaid options for my children, and I’m investigating other programs and resources now that I have a better understanding of what I am dealing with. My kids are as normal as any other kid, and I’m not ashamed of the spectrums. After all, the challenges we face make us human. I have learned a lot on this journey and you will too. Understand that there is no handbook to parenting; as long as you are doing your very best, you are doing a great job. I am no expert, and I am not claiming that any solutions are right or wrong. I am just a mother and an advocate for Brian, Evan, and Justin. I know you will be the best advocate for your children too.