Hope and help for parents with a child with autism

Caregiving for a child with autism may seem overwhelming. But there is hope and help for parents with a child with autism. This is what I learned when, as a grandmother, I became the primary caregiver for my autistic grandson.

“Mom, Dad, will you take Andrew for a few months?”

The plea came from my broken-hearted son. Andrew was the second oldest of their five adopted boys through the foster-care system. By the age of eleven, he’d already been diagnosed with Fetal Alcohol Syndrome and Autism Spectrum Disorder. At the time, the evaluations could only distinguish that he was “somewhere on the spectrum.”

Services for special needs children were hard to come by 13 years ago, and Andrew seemed to be falling through the cracks. Though my son and his wife fought hard with the school system for Andrew, help was slow in coming. Along with Fetal Alcohol Syndrome and Autism, Andrew also exhibited symptoms of ADHD (Attention Deficit Hyperactivity Disorder).

So John reached out to us. How could we not desire to help? We lived twelve hours away, which meant we’d have to have temporary guardianship of Andrew. Due to our work in human services, we had an above-average knowledge of what to expect from taking care of a special needs child; and the court was satisfied with this alternative placement for Andrew. We were also aware that the ages between twelve and seventeen are particularly dangerous for special needs children. Youngsters with autism still experience the hormone imbalances that other adolescents face. The surge of these impulses and anxieties intensify the adverse impact of autism and ADHD.

Even with two of us, no other children in the home, and our backgrounds, the challenge of caring for Andrew 24/7 seemed insurmountable. We quickly learned that there was a huge chasm between the “system” in which we worked and the practical, everyday challenges caregivers of special needs children faced.

Help for parents with a child with autism

Andrew came to stay with us right after Christmas that year. Since we lived in a small town and worked in the Court House, we were fairly well known within the system. We had much community support from the school, the church and friends. With all this advantage, taking care of Andrew still proved to be a difficult adventure.

Because Andrew was unable to associate cause and effect, effective discipline was extremely difficult. The very first night we had a problem with stealing. First-hand experience gave us a reality check as we grappled with Andrew’s inability to understand the concepts of truth and trust. In his mind, since this was now his home, whatever was in the home was his.

Andrew required constant supervision. One of his meltdown triggers was not knowing what he should do next. Left to himself, he became agitated and frightened. How could we help Andrew order his day without putting undue pressure on him or attacking his adolescent desire for more independence?

Next steps for the parent of a child with autism

Having taken care of my mother when she had Alzheimer’s, I saw similar responses, behaviours and cognitive impairments. I also had experience working with dementia residents during my time as the director of social services in a nursing home. This identification helped me comprehend and come up with strategies to minimize triggers for meltdowns and develop behaviour modification. I learned that the modifications began with me, not the child.

Learned experiences

Rather than heap on consequences, we developed a system of positive reinforcement. Rewards worked better than punishment. By removing known tempters, Andrew could make better choices and receive rewards for those good choices. Like crawling on your hands and knees to see the world as an infant does, we had to view Andrew’s surroundings from his perspective.

Similar to patients with dementia, Andrew had his nights and days mixed up. He would be up most of the night, then be so groggy during the day, his irritability was nearly constant, creating more frequent meltdowns. We consulted with a pediatrician, someone we could trust to accept our assessment, rather than think we were crazy or inadequate caregivers. He prescribed medication to help Andrew sleep. Once night and day straightened, Andrew’s behaviour improved dramatically.

Your child with autism may not face the same struggles Andrew did, but what is important to keep in mind is that your child has needs. Be aware of what causes distress or what triggers other adverse behaviours so that you can consult a professional in order to help your son or daughter with autism.

Creating routines for your child with autism

At first, bedtime was a battle of wills. Then we realized he could not cope with rules at that time of day.

Nighttime routine

We established a nighttime ritual that proved to minimize meltdowns and ease Andrew into a good sleep. At the required time, we sent him to his room to get into his pajamas. Occasionally, he would put on dirty pajamas out of his laundry basket. We made sure clean pajamas were laid out for him so he knew which ones to put on. When dressed in pajamas, he was given a nighttime treat (he always wanted ice cream) and allowed to take it upstairs. He also wanted a bottle of water for his nightstand, even if he didn’t drink any of it. Security. After he brushed his teeth, we put on calming music and put it on a timer. He was usually asleep within a few minutes, his meds having a quick effect.

Just as nighttime ritual and routine proved effective, we discovered the need for the whole day to be as predictable and routine as possible. Andrew did not cope well when his routine was changed without warning or explanation.

Morning routine

Andrew was cooperative in his morning routine. Since he still had a bed-wetting problem, we did insist on disposable diapers at night. He resisted at first. Once he realized he could wake up with dry clothes and a dry bed, he stopped complaining. He took his showers in the morning. We bought scented products for him which helped him comply with basic hygiene since he liked the scents. We allowed Andrew to choose his breakfast but gave him carefully selected options. This worked well. Andrew liked scrambled eggs but nothing runny. He would eat cereal dry since he disliked milk. Food intolerance and specific food preferences are common among children with special needs.

Daily rituals

When Andrew came home from school, he knew he could have a snack (it was also time for his afternoon medications that needed to be taken with food). Staying on track with his medications proved to be a bit of a challenge, but it was vital. By the time Andrew came home from school, his morning medication was already wearing off. To try to get him to focus on any responsibility was futile until his afternoon medications took effect. He would often go to his room and play with his cars for a while. Medication needs will vary depending on the child. Be ready to have discussions about medication and therapy with your pediatrician.

Once he was resettled and his meds had kicked in, we took him to our sports club where we had a membership. He was uncoordinated and found racquetball or other types of foot and hand coordinated sports to be too frustrating, though he did enjoy basketball and video games, all under a supervised environment. The club also offered short-term events such as breakdancing, which Andrew enjoyed. He did have a good attitude and was willing to try many different things.

The staff made a special effort to engage Andrew and let us know if there were problems. Before leaving, we always checked in with staff for a report on his behaviour and participation.

Creating a calming atmosphere

We had supper at five o’clock every night. Because his appetite was impacted by the medication, we did not make food an issue or a matter of control. We found a brand of Ensure he liked, so this helped with his nutrition, also reducing our anxiety and worry. Due to his aversion to food touching one another, we either used individual plates or served his meal on larger plates to separate his food.

After supper, he was usually calmed enough he could practice the trombone for band and do his homework. Andrew enjoyed being in band, since he had a particular fondness for music and dancing. His willingness to practice was hit and miss, typical of most preteens, but especially difficult for Andrew. Reward incentives were helpful.

Understanding your child with autism

Similar to Alzheimer’s patients, Andrew experienced what we termed “sundown syndrome” – the two hours before bedtime, especially during the winter months. Low keyed and low-energy activity during this time proved helpful. Understanding this time period where Andrew’s coping was severely challenged, we avoided anything confrontational. We did try to minimize his computer time and television time.

Keeping a routine on non-school days did present problems and challenges. Andrew enjoyed church activities, and our church leaders were very supportive. On Saturdays, Andrew was allowed to spend more time at the sports club.

Getting others involved

We did hire an older teen to “shadow” Andrew to give him a break from us and give us a break from him. This also provided a time for us to get groceries and other shopping needs. His shadow was excellent and played games with Andrew or took him for walks. Andrew’s “shadow” was able to make him feel special. One on one coaching and encouragement boosted Andrew’s confidence. The two forged a bond, and Andrew looked forward to the times he spent with Ian.

Hope for parents with a child with autism

Now, Andrew is 24. Though he lives independently, he does require some supervision to assure he pays his rent, has food and wears clean clothes. He calls his father frequently. He is highly social and loves being with his family. His passion is video games. We would prefer he enroll in vocational training, but he is resistive. We keep putting the idea out there. I’m sure one of these days, he’ll give it a try.

What parents of children with autism can do:

1. Sleep disorders are common among children with autism. Keeping a consistent nighttime routine will aid in sleep. If sleep disruption continues to be a problem, check with your physician for recommended medication or other treatment.
   
   
2. Use short sentences when communicating with your child. Children with autism often have cognitive impairments as well. Though many on the spectrum have higher than average intelligence, word processing can be a challenge. When giving instructions, do so one at a time. Processing several expectations at once can be difficult for most children with autism.
   
   
3. Keep a consistent schedule throughout the day. If changes are needed, or if the routine is disrupted, try to prepare your child in advance either with “practice” or with repetition.
   
   
4. Providing a shadow or a buddy was particularly helpful for Andrew. Many school programs now provide this service. Talk with your special education coordinator to explore options.
   
   
5. Above all things, pray for wisdom. Focus on the support systems you have. Most school and social services programs want to see you succeed as a parent and want to see your child succeed. However, these systems must explore the least invasive programs by law. Unfortunately, they often result in failure for those needing more than the minimum. Journal your child’s behaviour, both negative and positive and what works and what doesn’t. This information will help the “system” develop a better plan of intervention. Communication with your providers is essential.

Final thoughts on hope and help for parents of children with autism

The challenges parents face in caring for their child with autism can be overwhelming. They are exhausted, and sometimes they feel attacked when the system fails to meet their specific needs. Sometimes parents are so focused on trying to “fix” the problems associated with their child with autism, they forget to zero in on how unique and special their child is in God’s eyes. When the parent can view their child as a gift from God, the aches and pains of caring for that child seem less of a burden and more of a privilege.