You prepared for pregnancy, but you can never truly prepare for a child, much less a child with a disability. This experience looks different for every parent and every child. However, I have tried to consider some of the obstacles and some ways a parent could possibly prepare.
You’ve just been given the diagnosis that your child has a disability or may be born with one. This news is never easy to hear and can be devastating. Sometimes the delivery of the news can cause it to be even more traumatic. For example, when someone in the medical field gives the diagnosis and says that they are “so sorry.”
Hearing this message is quite discouraging, as the message already seems as though there is a loss. However, in this article, you will find that there are support systems in place to help you through the unknown. You will learn tips to help in preparing for your child and know that this is not a loss, but a wonderful journey in which you will find joy, understanding, and love.
During the prenatal phase, many tests are done to assess the growth of development of your baby. You can learn more about prenatal genetic testing here.
Maternal blood tests, ultrasounds, and vital signs are also monitored. During this phase, if the tests have abnormal results, technology can help in determining if the child will be born with a disability. Genetic testing can also be done at this point to help in diagnosing a child that may have a disability. If you have been given a prenatal diagnosis, this can be difficult to hear.
A common prenatal diagnosis is Down’s Syndrome. Down Syndrome can have disabilities intellectually as well as physically. In most cases, the physical differences can be found on the facial and head structure, which is easily recognizable at birth.
Finding Out After The Baby is Born
Autism is a diagnosis that can be difficult to detect until after birth. The stages of growth are where the differences can be seen and may take several years to help in identifying. There are various forms of Autism; currently, five have been identified: Classic Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, Rett’s Syndrome, and Childhood Disintegrative Disorder.
Another common diagnosis of seizures may also appear after birth and would be difficult to identify in the prenatal stages.
With a new diagnosis and trying to keep up with everyday activities, life can feel overwhelming.
It is important to set aside time for yourself. Make sure you are checking in with your mind and your body and spend time on you. Try to find time for a walk to help in clearing your mind. Taking a quiet bath or the use of aromatherapy are other options to help in refocusing.
One way to practice self-care is to practice repeating positive messages to yourself. This can be accomplished by way of meditation and posting reminders throughout your house. Also, reaching out to a support group, a counselor or friends and family can be helpful in expressing your feelings and finding ways to end the negative self-talk. Focus on being positive and flexible to change. Try to find humor even in the most difficult of times.
External stressors can contribute to feeling overwhelmed. External stressors are usually a result of other people’s words or actions. Try to focus on problem-solving and not taking things personally.
Educating people as to your child’s diagnosis can help you feel empowered. Many people don’t know what to expect and may present with their own biases.
You are preparing for your child while also worrying about your other children and how this will affect them.
Try to educate yourself with a plan of action and continue to try new things to see what will work. Time management can also help in decreasing stressors.
Tips for Helping Parents Accept a Diagnosis
You may find yourself with the fear of the unknown. Feeling afraid of what the future holds and being scared that you may not be able to handle it. With the right research and reaching out to local support groups, you can help yourself prepare.
You are not alone. There are people who have gone through this or are going through this that can help in offering what worked for them and what did not.
1. Focus On Your Expectations
It is normal to feel angry that life isn’t fair. You may feel angry that your child will not live up to your expectations or society’s expectations. You may feel guilty, wondering if what you ate or what environment you were in could have affected your pregnancy. It is normal to blame your spouse, or family.
Another emotion that does present itself is sadness. Grieving your expectations of what you perceived your child should have throughout their life. Grieving what society expects every child to be, whether it is by the way they look physically or their mental capacity. Grieving what you thought your future would hold, envisioning your child grows the way you had pictured. Grieving a perceived loss is normal. We all have expectations of the way life should be based on how our society reflects this through media or social situations. During this period, you will realize, there is no one and nothing to blame.
Your child may have a disability, but your love will not change. You will find strength in knowing that your child is very special, and you are not alone in this. Your child deserves as much happiness as any child. A feeling of anger may appear towards society for hearing, “I am so sorry.” You are right to feel this way, as your child may have challenges, but they are your child, and no one should be sorry because you will find a way to give them their best life.
2. Be Mindful of Relationships
Relationships may struggle, as well. Spouses may feel the strain if the focus is on the child and not taking time for each other. Spouses may also blame each other for the situation. There are support groups and counselors that can help with this challenge.
Coming together as a team will help in relieving some of the tension. Also, siblings may feel a strain. Try to take time independently with the other children. Having them with preparation for your new baby can support their feelings as having contributed as a family.
3. Take Time for Yourself
Remember to take time for yourself. As parents, we are often left with the task of balancing everything. Over time we tend to lose our reserves, and physical ailments may start to present. Make sure you are eating healthy, getting enough sleep, and exercising. Exercising can include a twenty to thirty-minute walk several times a week. Without the proper balance, you may find yourself worn down mentally and physically. This will make you more susceptible to a lower immune system and higher levels of stress. Also, reach out to your primary care physician if you are having feelings of sadness, hopelessness, and depression. Your doctor will be able to give you a referral to a specialist who can help you.
Have a Plan
1. Find Support Groups and Counselors Specific to the Diagnosis
Researching the diagnosis, finding parent support groups and counselors who can help you in understanding what to expect next, and how to best prepare is key. A great example of a national support group would be the National Down Syndrome Society (NDSS). The NDSS can be found on the internet and point you in the right direction to help in finding a local support group and additional resources.
Another wonderful national support group is the National Autism Association. The website can be found on the internet and can help in finding a support group and additional tools and resources.
2. Consider Finances
Often people do not realize that there may be financial stressors associated with caring for a child with disabilities. There are federally funded programs to help with additional care and equipment that may be needed. Supplemental Security Income (SSI) is additional money set aside to benefit to those with disabled children who meet the federal requirements.
3. Plan For Additional Services
Home services should be considered. Often services such as medical, rehabilitation, and occupational therapists will come to the home and provide care. This will help in decreasing the need to prepare for transportation and other accommodations that may be necessary to leave home.
4. Respite Care
Look into respite care as well. Having a respite set in place is helpful if you need time away or if an emergency comes up and you are not able to be home. Respite care is a short-term solution offering housing and medical care.
Another consideration is to find someone who will travel on family vacations. When traveling, one should consider all aspects of transportation. For example, if a wheelchair van is needed or additional adaptive equipment may need to be present. When scheduling appointments or visiting places, you may want to check out the area in advance to help prepare for how you will access the area.
5. Additional Advocates
If you have not already contacted a social worker or case manager, this is another option to consider in adding to the tools of support. A social worker is a great resource for the local and national community to help in arranging for services or in meeting needs that you may not have knowledge of. A social worker can also act as an additional advocate if you are struggling to find services.
6. Legal Services
Legal professionals are another aspect that may be worthwhile investigating. Meeting with an attorney or legal advocate can help you to further understand your child’s rights to educational, medical, and housing resources. Having a legal connection can help you with any potential future needs you may encounter.
Checklist For Making Your Home Accessible For All
1. The Environment- Sounds
Preparing the home environment is another part of the process. Sounds should be taken into consideration. Some people with Autism, for example, may need a quiet space, or a space with only specific sounds. Sounds can trigger anxiety or agitation and should be considered when preparing the home. A special area where a child can feel comfortable is key.
Lighting is another topic that should be considered. Bright lights can be overwhelming for a child who has Sensory Processing Disorder or may suffer from seizures. Keep toys in a specific area to avoid tripping. You may also want to avoid a situation where the child may feel overwhelmed with too many objects in the room.
Also, investigate toys that are specific to your child’s disability. There are many specialty stores that have educational toys that are adaptive to various needs.
If your child is prone is seizures or falls, you may want to consider padded flooring. One example of padded flooring is wall to wall carpet with padding underneath.
Another option would be a foam mat that could be placed on a hardwood or tile flooring.
5. General Access
Access to rooms should be assessed, making sure they are wide enough if a wheelchair must fit through. Stairs should also be considered when checking for access. Ramps may have to be set in place for easier maneuvering.
Also, electric chairs can be used to help in guiding upstairs.
Having a walk-in shower can help in avoiding an accident such as climbing over the bathtub to gain access. A shower stall also makes it easier if a Hoyer lift is needed to raise and lower the child with electronic equipment. Installing grab bars in the bathroom is another option to consider, such as in the shower, near the bathtub, and toilet. The grab bars can be used to help the child in being able to hold on if they have an unstable balance.
7. Stay Connected For Emergencies
In today’s time, everyone has cell phones, and more people are getting away from having a home phone or landline. In an emergency, a cell phone may not be able to provide the emergency operator with access to your location. Consider having a landline if you or a caregiver need to call 911 for a medical emergency. Some parents have chosen a medical alert button or pendant that has a built-in GPS locating device for the child. This allows for a push of a button to dial to a central location who can then connect to 911, giving your child’s information and location.
Finding Help in Early Childhood Intervention
Federal laws also protect children with special needs. Individuals with Disabilities and Education Act (IDEA) was set in place to protect those with special needs and support families. Early Childhood Intervention is a federal program under the IDEA authority that helps those with disabilities from the age of birth to six years old. Early Childhood Intervention monitors a child’s milestones to see if additional intervention and supports may be required. The IDEA states that every child has the right to a Free Appropriate Public Education (FAPE).
Early intervention is one way that the IDEA supports those with disabilities offering varied environments and tools to assist in learning.
Your child’s primary care physician will be able to refer you to an early childhood intervention specialist for evaluation. The specialist will have your child assessed, and a determination will be made as to what services and plan will be set in place. During this process, be prepared to have your child continually re-evaluated.
Remember that this is your child, and you will cherish the moments of happiness. It is expected and normal to feel overwhelmed and sad. You will find over time that the diagnosis does not define your child. Your child is unique and will need you to help in being an advocate for his or her needs.
The more you educate yourself and prepare with the right services and support systems the more your child will thrive.
Focus on achievements, and you will find joy and happiness. Many parents find that they have a better feeling of having a sense of purpose. There are so many more positive people in the world who will offer support, kindness, compassion, and who truly care. You will learn more about yourself and your capabilities. You will surprise yourself with patience and learn not to sweat the little things.
You will find what truly is a priority in life.