This post is to encourage parents, guardians, and or loved ones of young children with autism and or other conditions that effects them cognitively and or behaviorally. It is sometimes very overwhelming as a parent and a lot of patience is required raising a child with autism. Sometimes my husband and I wonder if we’re failing our son or if there’s something we are not doing right or could be doing better. I am here to encourage you to stop beating yourselves up, you are doing great! You are not alone! It gets better!

Signs that something was off/some of our struggles:

While I acknowledge every case of autism is different, I will share some of my son’s behaviors that led to a diagnosis in hopes that it will help someone recognize some of the signs in a loved one so further treatment could be sought.

My son, Josiah, has autism, Attention-deficit/hyperactivity disorder (ADHD), and sensory processing disorder. He was officially diagnosed at the age of 3 but the signs were evident starting at about 6 months old and progressed as he got older. He was behind on a lot of milestones, like saying “mama or dada”, making eye contact, responding to his name, and so on around 6-12 months. As he got to 12-24months, the more hyper and destructive he became. He was climbing and getting into EVERYTHING; and had no sense of fear of danger. He would often elope or escape the second a door opened and try to run into the street; as a result, I couldn’t take him anywhere in public (especially when the other children were with me) for fear he would take off and get hurt; and whenever we did go somewhere I was a paranoid mess. He was nonverbal and couldn’t communicate. He only echoed Whatever he heard and made unusual high pitched sounds; the sounds were more prevalent in indoor places so imagine going to church or the store and dealing with the noise and staring eyes. He didn’t know how to play effectively with his peers. His method of playing was lining objects in a line or grouping things together. Because of his sensory processing disorder, it was very difficult to wash and brush his hair, brush his teeth, cut his nails, clean his ears or do anything that involved grooming him. He would put up the biggest fight: kick, scratch, push, scream, throw himself on the ground, etc; and those blows were painful, even coming from a child. He had a high tolerance level for pain and would often hit his head on the walls or jump from chairs to the ground. He would not listen to any commands AT ALL, no matter how much I repeated myself or raised my voice. I often felt tired, frustrated, and at times hopeless.

Getting Help:

During his 18 months physical, the Doctor went through a questionnaire that raised red flags for autism. Josiah failed every single question on the questionnaire. The Doctor then referred us to a program called Early Steps for further evaluations including hearing, play, speech, cognitive, and behavioral observations. The end result of these evaluations was to begin occupational therapy (OT) at home. While OT helped by introducing ways to manage some of his sensory processing issues, it did very little to help with his behavioral issues. I did, however, learn of ways to temporarily calm him down, such as classical music and the use of weighted blankets/vests to help with sleep, tight hugs when he’s throwing a tantrum, using the child play tunnel and other sensory toys, and bouncing him on an exercise ball to comfort him, among other recommendations. The therapist encouraged me by sharing her and her autistic daughter’s personal experiences with autism and how she felt hopeless, but with the help of therapy and other resources, her daughter grew up to be a functioning adult living independently, working, and is able to manage her impulses (all the things I hope for Josiah in the future). Early Steps provided a wealth of information and resources to help him and for the first time ever, my husband and I saw a glimmer of hope.

Undergoing Therapies:

Josiah continued with Early Steps and home occupational therapy until he turned 3 years old. Once he turned 3, he underwent an evaluation and received documentation from the school district for an individualized education program (IEP) for Preschool and was referred to a Pre-Kindergarten program for children on the autism spectrum. Around the same time, we were finally able to take him to a behavioral and developmental Pediatrician for an official diagnosis of moderate autism disorder. It had taken almost 2 years to see a specialist because every office we contacted prior to that were booked for at least a solid year. The Pediatrician office referred him to speech and applied behavioral analysis (ABA) therapy, in addition to occupational therapy (OT), as well as Centers for autism and related disabilities (CARD) for additional resources. After nearly 6 months of searching, we were finally able to enroll him in all three therapies, speech, ABA, and OT. From our experiences, the Pre-K program did not really help Josiah much. Though it introduced him to group play and interactions with peers, he wasn’t learning much because he would not sit still long enough to learn and process the information. It got to a point where the teacher and paraprofessionals couldn’t really handle his behaviors effectively so per the registered behavioral technician’s (RBT) recommendations, we withdrew him from Pre-K and enrolled him full-time Monday to Friday, from 8am to 4pm in ABA therapy (he also received speech and OT twice a week).Within a few weeks of attending ABA therapy full-time, I noticed significant improvement in his behavior; and combined with speech therapy and OT, a huge improvement in his communication ability. Although he wasn’t able to carry on a regular conversation, he was using his words more to request for things and food. The therapies unlocked his intelligence and he was able to express himself more. He began to make more eye contact, respond to his name (from time to time) and follow commands (more time than not). He was still a flight risk but the growth was obvious.

At the age of 2 we accidentally discovered that Josiah recognized and knew the alphabet, shapes, colors, and numbers up to 20 without ever being taught by us when he would read/say them off of random things. He learned them from preschool nursery videos. Since starting the therapies, he was able to communicate his intelligence more on command. He recognized difficult shapes like nonagon, rhombus, hectagon and colors such as turquoise among other things. The therapies revealed how smart and how fast of a learner he really was because he was learning to process his impulses long enough to demonstrate those skills.

Needless to say, I’m a huge fan of ABA, speech, and occupational therapies and would encourage parents to begin them as early as possible for the most benefits. I would also encourage families to establish a routine with their child and practice consistency to achieve less outbursts and more compliance.

Where we are now:

Josiah had to get started on a low dose of Adderall this year for his ADHD and that drug works wonders; it not only calms his hyperactive tendencies but allows him to focus more as well. I was very hesitant at first about starting him on a controlled medication but when he started attacking other children at his therapy center and the other less potent medications were ineffective, I caved and agreed to have him start it. I encourage those of you in similar situations to do what’s best for your child. Don’t feel bad if you have to start him or her on medications, sometimes it’s necessary.

Josiah is 5 years old, happy, and very affectionate (he loves to cuddle and give hugs). He is very intelligent…he could read and write independently and spell words like universal, original, Netflix, Mickey mouse clubhouse, among other words. He loves to draw and is very skilled at it for his age. He is obsessed with everything mickey mouse, and is the biggest Mama’s boy ever. He is finally potty trained (thank you Jesus!) and requires less prompting to complete simple tasks. He eats just about everything, except things he cannot hold in his hands like soup, which is a huge blessing because I have spoken to other parents of autistic children who are picky eaters and have been made aware of the difficulties they face with getting their child to eat. He is not perferct, but who is?! (No one!). He still has moments of meltdowns and aggression toward his siblings and occasionally others especially when he refuses to do something. He still gets sensory overloaded and reacts by being super hyperactive when we’re in a crowded room or when there’s a lot of activity going on around him, such as loud music. It’s still a struggle to brush his teeth, clean his ears, cut his nails, and groom him (except baths, he loves taking baths), and he absolutely refuses to use utensils to eat. Nonetheless, he is a blessing who has taught our family patience, compassion, sympathy and empathy for others, and unconditional love. He still has ways to go but has come such a long way from the beginning.

My hopes for him:

My hope for Josiah is that he will grow up to live an independent life with minor adjustments and little to no supervision. I pray he will be able to control his impulses completely and learn to process the world around him; hold a regular conversation, work, drive, manage his own finances, and if it’s God’s will, even someday marry. I pray he will live a meaningful life that positively impacts everyone he comes in contact with. I pray he lives the purpose he was created for. However, if life does not unfold as I hope, I pray God will give me and my husband the strength, longevity, and ability to continue to support, care for, nourish, love, and encourage him in every way possible for as long as we live. I pray that even after we pass and go to heaven that God will give our daughters a heart to help him however they can; and also pray that they will marry understanding husbands who will welcome him into their family. It’s very unnerving thinking about the reality that my husband and I will one day die and leave him in the care of others but we release these thoughts to the one who created him and loves him more than we ever could.