Hellobee

This is the fifth and final installment of our interview with mamapink who shares a glimpse into life raising her 3-year-old daughter Ayla, who is on the autism spectrum.

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Do you have any tips for parents who suspect their children might be on the spectrum, or who have recently discovered their child is on the spectrum?

I am not a trained professional, but from what I’ve seen, every child with autism is very different. I would like to tell parents to be vigilant of subtle signs. Read up about the various developmental delays/disorders so that you know what to look for, and don’t be afraid to seek help if you think your child is displaying delays in more than one area.

If you suspect your child is on the Spectrum, the first step is to seek out professional help. Go to a developmental pediatrician, a neurologist, a psychiatrist, or someone who can make the proper diagnosis. Once you’ve received a diagnosis, then you will have a sense on which path to take from there. They may offer you social services to guide you through these first steps after a diagnosis.

There are plenty of support groups if that’s what you need. There are a lot of resources online as well. Online forums and communities are very prominent and extremely useful. Look into what your state and town have to offer for kids with special needs, as well as what they are obligated to provide to your child by law. If it comes down to it and your town’s school is not providing what you think your child needs, then look for an advocate/lawyer that specializes in special needs education. There may be free ones that work for the state and can help you mediate between you and the school board. Educate yourselves with the proper laws and rights.

For those in the same boat as us who have just received their child’s diagnosis and are being inundated with information on how to be a special needs child’s parent while being bombarded with overwhelming emotions, just know that you are not alone! There are a multitude of families out there going through the same things, and they understand and are willing to help! This is only the beginning of more meaningful memories to come in your lives.

It is important to learn to accept that your child is different and that your child may never be “cured.” Once that’s accepted, become your child’s advocate by helping them develop to their fullest potential. It is its own reward to see your child grow knowing that they are unique in their own way, sometimes to the point of brilliance and to a level of computational logic and honesty that you will never find in neuro-typical children. Embrace it and help your child harness and develop those gifts to their fullest potential.

What do you wish people knew about raising a child with autism?

Raising a child with autism can be emotionally, physically and financially draining. Obviously, it depends on the child’s temperament as well as how severe his/her condition is, however I think for the most part raising a special needs child is definitely harder than raising a NT child. Often the same principles that apply to NT children do not apply for neuro-atypical kids. I also wanted to point out that just because Ayla is considered high functioning, it doesn’t necessarily mean it is any easier.

Oftentimes I see how parents can be more critical of fellow parents than non-parents! It’s easy to assume that your parenting experiences and your family’s experiences can be applied across all other families and children. But we parents need to stick together and support each other, instead of comparing ourselves and our parenting styles to each other. We have to be careful not to discredit one’s parenting. What works for one child may not work for another.

I often get a lot of looks and I can hear people judging my parenting as well as my child when we’re in a public space and she is throwing the monster of all tantrums — crying, screaming, kicking, and rolling on the floor — the works! No one would know she has autism unless otherwise told. Though I understand that people may look because she’s causing a scene, I still get a lot of judgmental looks and comments as well.

I’m not condemning these parents because I once used to be one of those judgmental people myself! I just wanted to share our perspective having been on that side of the opinion spectrum and now being on the other side. Not everything is so black and white anymore, and not all kids that throw the most horrific tantrums are spoiled rotten.

Through my daughter’s diagnosis I’ve learned so much about autism and that there is still mountains of information out there still to be learned and discovered. I realized that the majority of the population knows so little, that I felt this yearning to reach out to people so that awareness can be spread, even if it’s a little bit at a time. Although autism is not a life threatening condition for most, it is still a worthy cause for people to learn about and help in whatever way they can. It is an ever growing condition with rates reaching 1 in every 50 children.

Please remember that empathy is invaluable! Understanding someone’s hardships sometimes is more helpful than you can imagine. Offer to help a family, even if it’s just to lend an ear for them to vent. We have found support in the most unexpected places and from unexpected people! Be kind to the special needs mom/parent. She is constantly going through an emotional roller coaster. I think the hardest thing as a mother of a special needs child was the lack of emotional break. You never get a break emotional/psychologically. Every day is so taxing on your morale that a lot of times it affects your body was well. Even if you take time away to relax, your mind never gives you a break! What is she going to eat? Is she getting enough sleep? What will happen once I’m gone? What’s her IEP going to look like next year? Will she have proper education/therapies next year? Will she always have these disabilities? Will she ever be able to socialize? Will she be able to go to college? Get married? Have children? Be autonomous?

These are just some questions that run through my mind even though Ayla is very high functioning. There are many families with children who are lower functioning than Ayla; they are non-verbal, epileptic, violent to others and themselves, unable to do anything on their own, not potty trained until they’re adults, and the list goes on and on.

Another very important thing I want to mention is that children and adults with autism need to be loved too. Oftentimes people with autism can be anti-social and unwelcoming of attention/affection from others, that even relatives and friends don’t know how to approach them. Perhaps it might be difficult to actually physically approach the child, but you can still support the parents/families of the child and show affection to the child in other ways. You can find ways of reaching out to them other than physical contact.

Recently I came across this amazing video that opens up a tiny window into the world of an girl with autism, and shows that the level of awareness that children with autism have is much more than what we and even professionals previously believed. This girl was once deemed mentally retarded, and yet she showed everyone that she was competent enough to express herself using a computer. She taught herself grammar while no one knew she could even understand simple things that were said to her!

People with autism simply have different ways of processing information around us. They are so hypersensitive to things that they are bombarded by these senses. In fact a lot of people with autism show higher than average IQ scores. Autism doesn’t mean less. It just means different.

People with ASD are often said to be stuck in their own worlds, unable to properly communicate with the rest of the world. Granted it may be true to an extent, but I don’t believe we need to necessarily rehabilitate them and force them to do things “our” way, kind of like forcing a square to be a circle. I believe we need to find a compromise and a common ground, teaching them how to communicate with us so that they can be understood by us and we, in turn, need to learn how to communicate with them in their language. We can help them to flourish in society by nurturing their strengths to maximize their potentials, instead of trying to force the square piece to fit into a circle hole.

I believe everything happens for a reason and only God knows the real reason. I believe God is perfect and his plans are perfect. He never makes a mistake. From a human’s perspective it may seem like a disability and honestly, as Ayla’s mother, I can’t say it’s easy to accept everything in stride all the time. There are times even now and there will be many times in the future that I may be discouraged, depressed, angry, bitter and constantly mourning the loss of my preconceived notions of a typical motherhood, but I trust that there is a master plan and this is a perfect set of circumstances for us in our lives right now. It came in the form of a blessing in disguise, so that we can re-commit ourselves to our Lord and Savior, admit that we cannot do this on our own, and be able to understand how marvelous His sacrifice was to us. Our current struggles and sufferings are mere specks of dust compared to Jesus’ sacrifice. I believe there is a greater plan for Ayla in this world and God will carry it through perfectly. =)

It was very difficult making the decision to come forward and to be open about Ayla’s diagnosis, especially because she is high functioning. She could have easily passed as a NT kid, a bit delayed here and there. And as parents we were obviously worried about social scrutiny and unnecessary judgments targeted at Ayla. What if she “outgrows” her diagnosis but everybody still puts a label on her? It would forever follow her. But I realized that autism is just a mere facet of who she is. It does not define her. It may explain a lot of her behaviors, however she, as a person, cannot be defined and described entirely by that one word. So my fears and concerns were squashed and the need to bring awareness to the world about this disability grew as one of my new passions.

I would like to express our deep gratitude to Bee and Hellobee for giving us this opportunity to share our personal journey here.

Last but not least, I would like to thank each and every one who has commented, messaged me and/or liked on Xanga, Facebook and Instagram. Every like, every comment, every message of support means so much to us. There is a lot of positive energy received and felt from reading everyone’s personal feedback to the interview, as well as reading about their own personal experiences. It solidifies for us the fact that everything we are doing as parents is not just helping Ayla, but also helping others who share our experience on some level in their own lives and/or families. I wish I could thank everyone individually but I hope that my sincere gratitude will be well received here. If anyone has any questions, suggestions, advice, criticism, I am open to all. Please do not hesitate to reach out to me either here or on Xanga/Facebook/Instagram @yjk76.