Managing the ups and downs of parenting can be difficult regardless of whether your child is a typically developing child, or a child with special needs. However, for parents of children diagnosed with special needs, the twists and unexpected turns can be significantly different. Parents, who are only familiar with typically developing children, may have no idea what the journey is like and for that reason, the parental expectations are invisible to them. Learning how to manage expectations when raising a child with special needs is imperative.
Here are 10 areas that can help parents manage expectations.
#1 Expect that your child’s level of skills may not fit the chronological age indicated in the ‘milestone development’ chart.
Child development is measured by when a child reaches and masters specific developmental milestones. For example, motor development milestones are marked by the child’s ability to reach out, roll over, crawl, push themselves up and finally balance enough to walk. Examples of speech and language milestones are the child’s ability to imitate speech sounds, by pointing to establish joint attention, saying common words (“mama” or “dada”) and to string words together into sentences.
Milestone markers build upon each other until the child is able to perform complex tasks. Since milestone markers are often presented in chronological age ranges, unrealistic expectations can be created for children with special needs.
What to expect: Expect that your child may develop more slowly and not fit into the indicated age category. They may “over excel” in one area and “under develop” in another by a significantly large margin. Manage this expectation by focusing less on your child’s chronological age and more on their current skill level, pace, repetition needs and progress.
#2 Expect that your child has a timetable of their own and will develop skills at their own pace.
The timetable of when your child will develop and master a skill is unique. Locate where your child’s skill level is on the milestones chart and identify all the other expected skills in that age range. Determine if your child is demonstrating the other skills at that level. If not, start at the lowest level and help them work their way up.
What to expect: Expect to feel like you are repeating yourself over and over again. It may seem like there is little progress and they are falling behind, but with time, skills will come. Its ok (and effective) to work on lower-level skills before moving on to the next level. Remind yourself that repetition helps to build a strong foundation to support the next level. At each turn, ensure they have the support they need to participate with others, regardless of how quickly they learn certain skills
#3 Expect that opinions from people who don’t know your child may be “less than helpful.”
Although many suggestions others have for you are helpful, some are not.
Managing the unrealistic and uninformed expectations of others can be challenging and at times, impossible. Opinions about your child’s behavior or about how you are “over-protective” or “under-protective” may be offered by total strangers.
It can be shocking to hear suggestions that are based on zero knowledge about your situation. “Less than helpful” opinions often result in additional stress. Be mindful that you are the one who best understands how your child copes and what your child needs.
What to expect: Expect that some adults may go way over the line. Some may even suggest that you should have stayed home instead of bringing your child to a family or social event. In this situation, believe in yourself. In time, you will learn when to push back and when to back down to people who have no clue what you are trying to accomplish.
#4 Expect that NOT all learning environments will benefit your child.
Programs designed to accommodate children with sensory, physical or social needs may not be a perfect fit for your child. They are not universal. Your child may need additional accommodations or an entirely different group, and that’s ok.
What to expect: Expect that just because you were told the group or activity is designed for children with special needs, it may not work for your child. You can manage this expectation by observing the environment first, before your child participates. If your child is already involved, observe to figure out if additional accommodations are possible in that setting. If not, move on.
#5 Expect to be a detective when there is a conflict, problem, tantrum or other type of interruption between your child and others.
Expect to manage conflicts and solve problems by investigating first. Think like a detective. Before making assumptions, such as your child is being bullied or excluded, gather as much information as possible first. Look at all the angels before coming to a conclusion about what may have occurred in a situation.
What to expect: Expect that there will be many “situations” that you will have to take a step back to understand before taking action. It is possible the situation results in an opportunity to support and educate others about how best to interact with your child. It’s also an opportunity for your child to gain insight about interacting with others. The effort you put into gathering information will allow you to understand the facts and effectively present your observations and opinions to resolve the issue.
#6 Expect that not all teachers/staff will be unbiased or have a positive influence over your child.
When I started on this journey, I assumed that staff, teachers and/or vocational coaches assigned to work with individuals with disabilities were understanding, patient, knowledgeable and kind. Although that was usually the case, it was not always the case.
What to expect: Expect to always observe and become aware of how your child is experiencing a school, social or work environment. Regardless of your child’s age, communicate with teachers, staff and peers. If possible, communicate with your child about their experience. Sometimes when a child has special needs, the older they get, the more vulnerable they become as they branch out into the community. Expect to stay aware of this vulnerability.
#7 Expect that your child needs more sleep than others.
There are many conditions such as autism, epilepsy, anxiety and down syndrome that contribute to irregular sleep patterns. Irregular sleep patterns can also be caused by the side effects of medications. Sleep interruptions can be observed in the form of sleep apnea, acid reflux, movement disorders, bed-wetting, insomnia and difficulty falling or staying asleep. These problems can significantly contribute to lack of sleep, irregular circadian rhythms and chronic fatigue. Fatigue and exhaustion may contribute to motivation and behavior problems that may be easily resolved if the child/adult gets more sleep.
What to expect: Expect that although your child is in bed, they may not sleep efficiently. Because of this, they may need more sleep and naps so their brain can rest and recover. Although it is ideal to follow a sleep schedule, routine and pattern, this is not always possible, especially if your child experiences seizures, anxiety or side effects of medications. Expect that some may not understand and interpret increased sleep as laziness.
#8 Expect that your child may have “had enough” of a situation, even when they are motivated to be there.
Regardless of where you are, or who you are with, enough is enough. Even if a child is with people with whom they are comfortable, they may reach a point where they can no longer tolerate the situation. They may be overstimulated, hungry, tired or experiencing low medication levels, side effects of medications or food additives. They may have had an exceptionally long day of focusing on tasks or participating in physical activities. It is also possible that a change in their schedule such as a school field trip, doctor’s appointment or a substitute teacher caused interruption and fatigue. All of these situations can put your child at risk of finding the situation unbearable.
What to expect: Expect that others may misunderstand the reason your child suddenly finds a situation intolerable. Regardless, you know your child. Remain confident that following your child’s lead that “enough is enough” is the right direction.
#9 Expect that you may feel emotionally drained by the “uninformed” opinions of others that may feel like constant criticism.
The opinions of well-meaning family, friends and sometimes perfect strangers may feel like constant criticism. Especially when you are dealing with a medical crisis, behavioral issues or problems that seem to remain unresolved.
What to expect: Expect that your parenting style and parenting choices may be met with a barrage of advice from people who are unfamiliar with your situation and who do not know your child. Choose your battles. It can be emotionally draining to address every battle of the uninformed.
#10 Expect to be a leader and promote “teaching moments” every chance you get.
Expect to step into the leadership role to “re-frame” the situation so that others gain awareness about how to communicate with and include your child. Lead others so they can get to know your child as a unique person, not a disability. Utilize situations as teaching moments. These opportunities help those unfamiliar to understand that children with special needs have the same needs as everyone else like friends, connections, education and to have fun when socializing.
What to expect: Expect to be pleasantly surprised about how many people want to get to know your child and better understand their needs. You may discover that others avoid your child, not because they do not want to interact, but because they are afraid of saying or doing the wrong thing. They just don’t know.
Parents and caregivers who act as leaders, help others communicate and connect with their child, especially if technology or sign language is utilized.
One Last Thought
Parents and caregivers of children with special needs are the experts. They have a front row seat as they watch their child learn and develop new skills from infancy through adulthood. They understand what their child can do, and what they cannot do “yet.” However, knowing what to expect and managing these expectations is just as important. Most people will appreciate the wisdom you share with them.
Contact Nancy Musarra Ph.D. to consult with her about your child and family’s needs. Dr. Musarra consults with parents and caregivers from around the world through workshops and individual meetings. For more information about workshops, her books, or first responder training, contact Dr. Musarra at firstname.lastname@example.org or 216-954-5665.