7 pieces of insight from a mom of an autistic child

April was Autism Awareness month but we are still thinking about it here at Chai Mommas. It’s hard not to when recent reports are saying that 1 in 50 American kids is diagnosed with this mental condition.

I recently had the privilege to interview and get to know Janine Boleda, CEO of Good Karma Applications (www.goodkarmaapplications.com), just a little better. Janine’s main title like so many of us is Mom but her son Will in particular has autism which makes her job just a little more challenging, unique and inspiring in many ways.

janine_ will

Will was her biggest inspiration to create and find innovative solutions to everyday struggles that so many kids, like her own, face. And this won’t go away with age. This is something that your child will live with for the rest of their lives. When they reach a certain age though, your child could decide to apply for disability insurance should their autism affects getting a job, and it could be important to have a look at this “disability insurance tax deductible” article to see whether the money you receive is tax deducted. It’s important to know that you’re not going through this alone, as many people like Janine and Will are experiencing it too. Will is the reason she was driven to develop Good Karma Applications – a company whose mission is to create low cost, effective mobile technology to provide other parents, caregivers, and educators with the tools to help support those with Autism, learning differences, developmental disabilities and communication needs.

Janine took a few minutes from her busy schedule to share with me answers to questions about her son and life in general with an autistic child.

Janine, thank you so much for giving me the chance to learn more about you, your family and the choice you made to make a difference in the lives of so many kids. Your honesty was refreshing and I know your words will resonate with so many moms and dads out there.

– Shraddha

1. Looking back, were there any signs of autism? If so, what were they and when did you first begin to notice?

From about 9 months old, I was concerned about my son. He was always a little slow to reach his milestones, but still within “normal” ranges. He just seemed a little more disconnected and he seemed to sometimes reach a milestone, only to lose it again. One week he would wave “hello” and the next week he seemed to have lost the skill. He never would reply to his name so at first I was concerned that maybe he was deaf. We had a hearing test as and all came up normal. Today, he would be considered to have moderate to severe Autism and remains non-verbal. He attends a school for children with Special Needs where they have specialized trained staff who can support and teach him in a way that best suits his unique learning style.

2. How was your child diagnosed? Are there tests? What is the medical process of diagnosing?

By the time Will was sixteen months old, he was still not babbling and we were getting concerned. He had also continued to lose skills (stopped waving and seemed to make a few gains, only to lose them). His pediatrician referred us to our local Regional Center. They performed some developmental tests (M-CHAT) diagnosed him with PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified). A little after two years old, his neurologist performed more evaluations and officially gave him an Autism diagnosis.

3. How has being a mother of an autistic child affected your life and that of your family?

I think having our son has made us a more empathetic and patient family. My girls have an understanding of struggle and the human condition that most people don’t get to have. They have beared witness to the rude and cruel nature of some people while they have also, and more often, seen the kindness of strangers.

4. How has this experience changed you?

There are lots of ways having a child with a disability changes you, but the same can be said about becoming a parent. We definitely have a slower pace of life and don’t take anything for granted. We appreciate gains that are so innate for other children and that other parents take for granted. Whenever I hear a parent tell a child to “be quiet,” it makes my skin crawl. I hope that parents will take the time to see how blessed they are to have children that have the ability to talk. Until you have a child that can’t tell you that they “love you,” you don’t appreciate how much of a gift that is. It pains me when I see parents place unrealistic expectations on their children and become so angry and disappointed if their child can’t reach their unrealistic expectations. Be thankful for your child’s health and appreciate them for who they are. When you have seen a child who has to fight just to perform basic life tasks, you gain a unique perspective on how blessed you really are. In addition, four years ago, my son inspired me to create a mobile application company (www.goodkarmaapps.com) to support those with special needs. He has completely changed the trajectory of my life for the better. Though sometimes this journey can be tiring emotionally and physically, the blessings far out way any negatives. But, again I think that can be said for being a parent, special needs child or not.

5. How do your other children handle your son’s autism and the attention he requires?

My girls are amazing and very loving of their brother. But, they don’t know any different. They don’t see Autism, they see their brother “Will”. When my eldest daughter was about eight, she told me that she was thankful for her brother as she said he let her “see what her friends’ hearts were” by the way they treated her brother. I have found the same thing true for me.

As parents, we make sure that we make “special date days” for all our kids so they get a chance to get extra attention. Just the nature of having a child who has extra needs, our girls often get forced to wait or put their needs behind their brother’s. We try to recognize that and acknowledge how much we appreciate their kindness. As parents we try to be diligent about being “fair” though this is not always “equal”.

6. What do you find to be the biggest challenge? How do manage this?

The biggest challenge is overcoming people’s misconceptions about my son and what they see as his “potential”. I am constantly having to get people to see that just because he doesn’t speak, doesn’t mean that he doesn’t have something to say. My biggest personal challenge is the worry about what will happen to him when my husband and I die. We know that he is going to depend on someone for the rest of his life and we know that the kindness and understanding of strangers is going to directly affect the quality of his life when we pass on. For that, we plan for the future as best we can and the rest we will have to give over to faith.

7. If there are any moms/families dealing with the same issue, what advice would you share?

If you have any concerns about your child’s development, seek help as soon as you can. There are early intervention programs that are research based and shown to be effective with young children. If you have a child that is diagnosed, look for a local support group that you can reach out to and connect with other parents. I have found parents have given me some of the best advice and ideas on therapies to try with my son.

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