1. Feeling Stressed & Emotional
When your child is born too early or is not developing as they should, you are feeling stressed and worried. You do not know what your child’s and your future looks like. Additionally, you do not know if your child will “catch up”, meet their milestones. Because you have new responsibilities and roles, you are feeling overwhelmed.
At times your child improves on a developmental skill such as standing, you may think your child will eventually develop normally. In reality, your special one continues to struggle. Therefore, you experience the grieving process because your baby’s struggle to develop properly or be “normal” was not part of your plan.
2. Limited Time
Your baby was born premature.
If your baby was born prematurely before 37 weeks, you probably are spending a significant amount of time at a hospital. Your baby will spend a significant length of time in the NICU. Due to complications, misdiagnoses and illness, your child may spent up to 6 months in the NICU.
To provide milk for their babies, moms are particularly busy by breast pumping every 2-3 hours.
Busy with basic care
When your child is older, you continue to be occupied while taking care of him or her. Basic care needs such as bathing, dressing, oral hygiene and feedings (orally or G tube) take time. Not only are you a caregiver, you are also have other responsibilities such as a transporter for your child. As a parent, you wear many different hats and have a variety of roles.
The severity of your child’s disability and his or her abilities will depend on the level of care you need to provide and the amount of time you dedicate to your child. For instance, if your child is similar to my daughter, she is dependent on others to take care of all of her daily living needs.
Early Intervention Program Ages 0-3
From ages 0-3 years old, your child will participate in an Early Intervention Program through the state you live in. Usually, children will have therapy through the Early Intervention Program at home. The Early Intervention therapists will come to your home for one or more sessions per week of physical, occupational, hearing, vision or speech therapy for a hour.
Your time is limited.
Since you are spending so much time taking care for your special needs child, you unfortunately have less free time. Unless your son or daughter is in school full time or has a home nurse, your time is limited for your own relaxation or even spending time with your spouse or other kids.
3. Balancing care for your child with a disability & other children
If you have a child with a disability and other children, you are probably struggling to take care of all of them. Certain times are more stressful than others. For example, you could be feeding your son or daughter and your other children are fighting with one another. Another illustration is your child with special needs is crying in her bed at night and his/her sibling also needs to go to bed. Therefore, juggling or balancing your care for all of your children including your special needs child can be frustrating and difficult.
See related post Helpful Tips When Caring for A Special Needs Child
4. Finding Time to Dedicate to Your Marriage and/or Relationships
Throughout the day, you are taking care of your special one and other children. Therefore, you probably do not have much time to spend with individuals you are in a relationship with. Having a nurse, babysitter or another family member to watch your children while you go out with your spouse or friend would be helpful. At night, you can block out some time to have quality time with your spouse, a friend or family while your children are sleeping.
5. Figuring Out and Finding the Right Equipment for Your Child
When Savannah was 3 years of age and in the Early Intervention Program, a representative from a company that sold equipment came to our home. The representative gave us two options to transport my daughter around. One option was a wheelchair and one was a stroller. I choose the stroller because I didn’t like the idea of having a wheelchair.
Poor choice of equipment
The stroller ended up being bulky, heavy and difficult to handle. The seat of the stroller was the heaviest. To transport the stroller, you need to take the seat off of the base of the stroller, which was difficult at times. The stroller took up much space in my vehicle.
The stroller was not a good fit.
One of the choices of seating equipment that was provided while by early intervention was not a good fit after all. Savannah would get her head behind the head rest and the straps would not support or keep her in position in the stroller.
See 8 Top Essential Products for more information about equipment.
Trying out a loaner before you buy.
Although you could not try out equipment before you purchased it years ago, now a days you can use a model for 2 weeks. Usually, you will meet with a sales representative from a provider such as National Seating Mobility or Numotion
or Numotion https://www.numotion.com/
Your therapist will help with the process.
Your child’s physical therapist will also be a part of the process to of purchasing equipment for him or her. Your therapist will write a letter of necessity to be sent to your insurance company. A prescription from your child’s pediatrician will also be needed to begin the process.
Finding the right equipment for your child is definitely one of the challenges of being a parent of a special needs child. However, if you have a good physical therapist and a reliable company/ provider who provides rehab technology, the process can be smooth.
6. Lacking Self Care
As you are taking care of a special needs child and other children and doing household chores and working, you often have a limited amount of time for self care. You are probably not relaxing as much as you should. As a parent, you feel overwhelmed with the day to day. Additionally, your plate is full with numerous of responsibilities and tasks that need to be done. There are endless things to do.
What do you like to do for fun or relaxation?
However, what about time for you? Did you remember to take care of you? What do you like to do in your spare time? Read a book? Watch a movie on Netflix? Time to exercise? Visit or phone a friend?
Take care of you.
Even though you may have tons of responsibilities and duties as a parent, you have to remember to take care of you. Otherwise, you are more than likely to be stressed out, exhausted and have difficulty managing your emotions.
7. Financial Hardship
Having a child with special needs or just children in general can be expensive. A child with special needs require a significant amount of items than a child without a disability.
Equipment to improve developmental skills
They need equipment to achieve their developmental skills such as sitting, walking and standing. If your child is unable to be ambulatory, your house and vehicle will need to be adapted.
Need new clothes
All kids often outgrow their clothes every year. Therefore, you need funds to purchase new clothing, which can be expensive.
Moreover, they need medications to control conditions such as seizures, reflux and low muscle tone. Throughout the year, your child will need to see his or her pediatrician and specialists such as a pulmonologist or neurologist. At your doctor visits, co-pays will need to be paid. If a medical procedure was done such as G tube placement, you will may have a medical bill. Another significant expense would be a hospital stay or a paramedic call.
8. A Hospital Stay Experience may be in your Future
Unfortunately, your child may have a hospital experience at an early age. If your son or daughter is hospitalized for surgery, illness or some medical condition, more than likely it is a challenging and stressful time. When your child is in the hospital, your daily routine radically changes. Most likely, you need to stay overnight with your child. You cannot be home during that time. Also, you lose sleep because you have to sleep on a pullout sofa at the hospital. If you have other children, you may not be able to see them or your time with them is limited during your stay.
See related post A Hospital Stay Experience
9. Your Home May Need to be Adapted or You NEED to Move
In the case your child is non ambulatory, your home may need to be adapted at the time your child can no longer be carried. Majority of homes have 1 or 2 flights of stairs. Therefore, your home will need ramps, lifts or an elevator to move your child around your place and in/out of your house. Sometimes, it’s better to move to a ranch style home or build a custom home for your special needs child and family.
10. You May Need a Special Vehicle
In addition to adapting your home for your child who is non ambulatory, you may need a special vehicle with a lift or ramp for transportation purposes. However, a Multi-lift can be used in a regular vehicle to lift your child and put her in her car seat. It also lifts her stroller or wheelchair and places it in your vehicle. http://accessunlimited.com/html/multi-lift-car.html
As a special needs parents, you will come across a multitude of challenges such as feeling stressed and emotional, having limited time, and having difficulty balancing care for your special needs child and other children. You may struggle to find time to spend with spouses, family members and friends. Figuring out and discovering the right equipment for your child is another struggle. You are so busy taking care of your special one, however you may lack or have limited time for your own self-care. Having a child with a disability can be expensive and you may experience financial hardship. Additionally, you may experience a hospital stay in your future. Lastly, your home and vehicle may need to be adapted if your special needs child is non ambulatory. Although you probably will have many challenges along your journey with your special one, I believe you will find hope and joy and overcome any challenges you may face.
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