I'm the proud mommy to a child with autism. I can say that now but I lived in denial for a long time. No, I was not ashamed of my son. On the contrary, in my eyes he was perfect so I couldn't see that others seen him differently. He was my beautiful and perfect son.
Now, he is my beautiful and perfect son that also happens to be autistic.
Ronny is 9 years old and it actually took me about 8 years to admit that there was something different about him. You see, Ronny almost didn't survive when he was born. Within an hour of being delivered he was airlifted to a Tulsa hospital with heart complications. It was touch-n-go but with prayers and the grace of God, Ronny survived.
We all were so grateful that Ronny survived but Ronny just didn't survive, he thrived. He still suffers from pulmonary stenosis but you wouldn't know it by looking at him. He is a BIG boy and looks healthy as a horse. In fact, doctors are projecting that Ronny will be well over 6 feet tall (more like 6'6"-6'8"). He is 9 years old and wears a size 9 in MEN'S shoes. His older brother is 16 and is about 5'10" tall and we have markings on the wall showing our boys' heights and Ronny at 9 is as tall as Bubba was at 14.
Anyway....I never was one to compare my children's milestones. Brandy, my oldest, was walking by the time she was 10 months old and potty trained by 13 months. Bubba didn't walk until quite a bit later and took longer to potty train. I didn't sweat it. I knew he would walk when he was ready and be potty trained when he was ready. No big deal. I knew that they would reach their milestones on their time frame...no one elses.
Ronny did the normal baby babbling and said "mama" and "dada" as expected. But then we noticed his speech was really limited. By the age of 2, he still didn't speak much. I recognized every groan and grunt and knew what he needed and provided it for him. My mother-in-law teased me that Ronny didn't have to talk because I knew what he wanted even before he did.
Fast forward several years and today, Ronny is immature for his age. He still speaks and acts like he is around 3 or 4 years old. After getting diagnosed and much research, we know now that Ronny has autism. If I had known more about autism early on, I would recognize a lot of signs that Ronny had that would have pointed to autism.
For example, some things Ronny does that is autistic behavior include:
- He walks exclusively on his tiptoes.
- Needs routine. Any change in the routine really causes him issues and meltdowns.
- Extreme attachment to a stuffed toy "Pikachu". He has this toy with him at all times. We cannot leave the house without it.
- He puts toys in order and straight lines. Very precise.
- Paces all the time. Does lots of hand movements and talking to himself as he paces (Stimming).
- Reacts to pain differently. Pain doesn't really bother him like other kids. For example, he broke his elbow awhile back and didn't really cry. Moved it all around and the doctors didn't think it was broken because of the way he was moving it and acting but on looking at the x-rays, he had 3 bad breaks.
- Overly sensitive to scratchy tags on clothing.
- Writes hours a day in his notebook. I think it is calming to him but he draws basically the same thing page after page, day after day.
Anyway, I just wanted to share our story with you. Perhaps you have a child that is autistic or that you think may be, I wanted to provide a bit of history of what we have learned.
Here are some pages out of one of his notebooks.
BTW, boys are 5x more likely to develop autism than girls.
We are very fortunate in that Ronny is verbal because 40% of all autistic people are nonverbal. Another way we are totally blessed is that Ronny likes to hug and kiss momma and he will hug is brother, Dad, and grandma. He used to hug them in an awkward way and look away when he hugged them but now he does better. He has never minded hugging me or getting kisses. A lot of autistic people do not like affection and my heart breaks for those families. I can only imagine how much harder life is because of that.
Thank you for reading....
To make Ronny's day, please view his video below.
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I was surprised to read this...When I read your blog I find we have alot in common, but was surprised to read this...Our youngest daughter(adopted) has Autism Spectrum Disorder...Like you we knew something was not right it took us years to get a diagnosis, she is not severely autistic, she is very mild with several learning disabilites and communication issues and she is one that shy's away from touching and being hugged etc.....Anyway I was surprised to read this but sounds like your family is thriving and doing well inspite of autism...
ReplyDeleteGod bless you and your family!
Thank you so much for reading my post. It is amazing how much we have in common, isn't it? I bet if we ever met up, we could be great friends.
DeleteBeautifully written from the heart! I too have gone through what you have with my daughter. She is on the spectrum with a main diagnosis of Asperger's Syndrome. She is EXTREMELY verbal and when tested at age 4 for neurological disorders, came out with an IQ of over 140. She is very bright, learns fast, needs routine, LOVES hugs and kisses (on the cheek only) from mom and dad and will accept hugs, for the most part, from family members. She fixates on certain things and that is all she will talk about. She does not like large groups so is in smaller classroom settings with other kids with varying degrees of Autism, needs headphones in loud areas, walks on her toes mostly when excited, flaps when excited, has major texture and tactile issues (limits what kinds of foods she will eat and clothing she will wear), loves to read and will remember even the most minute part of a book, doesn't know how to play with kids her own age and prefers to play with kids 2-3 years younger and talk with kids 2-3 years older or adults. There are so many different degrees of Autism that most people just assume that she is spoiled or misbehaves a lot because she doesn't "look" like she is Autistic. You are doing a remarkable job with Ronny! Like my daughter said once "Being Awesome is hard work. Having Autism is hard work. Guess I just have to work harder" This is from a 10 year old! They are wonderful children and we can learn a lot from them if we take the time. Hugs to you and your family!
ReplyDeleteMichelle, thank you so much for your kind words. That is awesome about her IQ. We are just noticing about textures with Ronny. We at first just thought he just didn't like the taste of certain foods but am thinking it is more of a texture issue instead. And now that you mention it, Ronny's memory is amazing. Like just recently, he is terrified of storms and said last year on May 20th we had bad storms. I thought, yeah right. When and looked on my calendar and last year on May 20th it had rained 3". I understand completely what you mean. If Ronny is having a meltdown due to crowds or something, people look at you and you can tell how they are whispering and acting they think he's just being a brat. He generally just cries or something but he isn't a brat. I want to tell them then I think "it's their problem, not ours. We don't have to explain a thing". Love what your daughter said. She sounds remarkable! You are doing good I can tell. Hugs!!!!
DeleteThank you for sharing your post! My son is 20 and he has Down syndrome and Autism. You almost described his exact characteristics. My son is basically non verbal - he does sound out words and I can understand him, but others have a hard time so I translate. My son is attached to lanyard - just so he can constantly spin them. He carries it everywhere and sleeps with it under his pillow. He stopped taking it to school, but I think they must have taken it away and it upset him so he isn't doing that again. :) He has recently started a new behavior where he spins in a complete circle when he changes direction - like from hallway to his room, etc. And he is a hugger too. Very very loving. It's like the characteristic of Down syndrome is stronger there. He is a Momma's boy and I love him like crazy. Your son sounds awesome! And you sound like a wonderful Mom. I joined your FB page - looking forward to your posts. :)
ReplyDeleteDidi, You are surely welcome. I am glad he is so loving. It makes it easier, don't you think? They are such special children and I'm glad God entrusted me with Ronny's care. I appreciate you joining my FB page. I try to do a giveaway at least once a month there. Hugs!
DeleteThank you for writing this. We autism mommies need as much support as we can get!! My son Bobby is 8 and he too has ASD. A lot of the characteristics you listed are very similar to Bobby. I must say, your son has very good fine motor skills!! Bobby still writes very large and is just beginning to draw figures. But, it's slowly improving. Bobby is verbal but sometimes has a difficult time coming out with the right words, but I almost always know what his is trying to say. Thanks for sharing and I enjoy your blog!!
ReplyDeleteLori, thank you for your comments. I do appreciate you taking the time to read my post. I agree that we all need to stick together and support one another. Do you have a blog or are you on FB? Perhaps we can connect there too. How old is Bobby if you don't mind me asking? Hugs!
DeleteBobby is 8. No, I do not have a blog. I am not a blogger, just love to read them!! I am on FB. I just found your page and liked it.
DeleteAwesome Lori. I appreciate that.
DeleteThank you for sharing these signs and behaviors for the rest of us to know and understand. Autism seems to be so much more common, it's important for us to learn how to encourage and support families who are dealing with this. Sounds like you are doing a wonderful job with your Ronny, and it's obvious he is a joy to you!
ReplyDeleteLinda, thank you so much for your kind words.
DeleteHello! I found you through the Hope in Every Season link up and was intrigued by your title because I too have a child with Autism. My daughter was diagnosed almost a year ago and I grieved the diagnosis, but God healed my brokenness and showed me the beauty that having a child on the spectrum can bring! It's so nice to hear from another parent who can relate! Blessings to you! You can find me over at faithalongtheway.com for our story. :)
ReplyDelete