Special needs parents become accustomed to being their child’s primary caregiver. After all, no one knows them better than us. We are the ones who have been there for them every strep of the way. Every doctor’s appointment and new diagnosis, every hospital stay and medical procedure, every illness nurturing them back to health, every late night meltdown and every miraculous moment they overcame an obstacle put in their way.
As our children get older and become ready for their next transitional step, whether it be starting preschool, mainstream school or attending a medical daycare facility, it never gets any easier as a parent to give up more of our caregiving role and put our children in the hands of someone else. However, this is a necessary step and important for the development of the child and the relationship they have with their parents and the outside world.
Last week marked the start of a new chapter for our almost six-year-old daughter, Alyssa, and our entire family. Alyssa will now be attending a daycare facility for medically fragile children called PediaTrust in Columbus, MS. She gets picked up from school and transported to the center, where she spends the remainder of the afternoon until they bring her home. At the center she receives therapy, works with a special education teacher during a designated time, participates in group activities such as arts and crafts, story time and music therapy. She also gets one tube feeding during lunch time while she is there.
The decision to start PediaTrust was made primarily due to the fact that my husband Jonathan and I do not want Alyssa to attend public school in the classroom after she ages out of her special needs preschool T. K. Martin Center for Technology and Disability Project IMPACT, which could potentially be next school year. The reason for this is because of her extensive medical conditions that impair most every aspect of her development. She needs extra care and attention that we feel would not be given to her in the public school setting.
Alyssa enjoying her time at PediaTrust.
We knew we needed to come up with a plan that worked best for Alyssa. Many special needs families decide to homeschool, but we did not feel that would be best for her. She thrives from interaction with her classmates and the structure she gets while at school and in therapy. We wanted to give her as much of that same structure as possible. Therefore, PediaTrust became our best option along with homebound education. After she ages out of T. K. Martin we will enroll her in our local school district, but put into her IEP (Individualized Education Plan) that she will be homebound and receive her education from a teacher that comes to our house. By choosing not to homeschool and do homebound, she will be able to receive the resources obligated to her as stated in her IEP, such as vision services.
Even though we knew PediaTrust would be the best environment for Alyssa, we still struggled with the decision to send her. Would she be safe riding the bus? Would there be a tube feeding fiasco? Would they know how to handle a meltdown and calm her? Will she be able to function throughout the day if she doesn't take a nap? Will she act out because she is frustrated and hurt another child? These were all valid concerns, but ultimately we realized we had to do what was in the best interest of Alyssa.
The staff at PediaTrust.
We are choosing to put our faith and trust in the well-trained pediatric nurses at the facility. We are choosing to believe that they too will fall in love with the spunky, vibrant, silly little girl that is Alyssa and take care of her to the best of their ability. Individuals that choose to work with special needs children are a Godsend in my opinion. We refuse to be the parents that live in fear of every possible thing that could go wrong with our child and always assume the worst in people who take care of them. By giving into that fear Alyssa would miss out on a great opportunity to interact with other children and create experiences that will enrich her life. We chose to put her needs above our concerns.
As Alyssa’s mom and primary caregiver I feel that I am struggling the most with this transition. I have always been the one to administer her tube feedings and take her to and from school and therapy. I’m learning to let go of my need to control every aspect of Alyssa’s daily care. I cannot be there with her at PediaTrust to tell them when or how to feed her. Sometimes she prefers to be mobile and wear her feeding backpack and other times she may be content eating while in a highchair, doing an activity, or even while napping. I know what has worked best for her in the past and have learned many things through trial and error. I know when Alyssa is getting upset because she is tired and needs a nap and I know when she is getting frustrated and needs a break. These will all be things her new caregivers will have to learn about her. I am still learning new ways to care for Alyssa even after five and a half years.
Alyssa enjoys being indepent while eating.
Along with having to learn how to let go of being in control, I’m learning how to cope with the mom guilt I feel about sending my child to daycare while I’m a stay-at-home mom who doesn’t work. In the back of my mind I have this guilt because I feel like I should be the one taking care of Alyssa and spending that time with her. I chose to be a stay-at-home mom many years ago in order to take care of her and be the one to take her to and from school and therapy. I know just how fortunate I am to have the ability to stay home with my kids and spend quality time with them, so I feel that I am being unappreciative of my situation by choosing not to spend every second I can with Alyssa.
The mom guilt I feel will always be there, mostly because I will always miss her when she is not with me, but my rational brain knows that it is okay that my nearly six-year-old daughter is not at home during the weekday (well actually just four days out of the week). Sometimes it is hard for me to accept that Alyssa is growing up and not a little baby anymore. Neurotypical children her age are in kindergarten all day and preparing for first grade. We feel that what is best for Alyssa is to have as close of a normal structured “school” day as her peers, but in a safe, secure environment such as PediaTrust.
This is now what my typical day looks like!
Alyssa’s new schedule has changed my day-to-day routine drastically. Now, I only have to take her to school in the morning and pick up my seven-year-old son Triston from school at 3 o’clock in the afternoon. By not having to pick Alyssa up from school and take her to and from therapy in the afternoon throughout the week I have more time to spend at home with Addison, my nearly two-year-old daughter. This gives Addison more of a structured day and allows us more time for spontaneous, fun outings. I also have more time throughout the day to spend doing things for myself, such as working on my blog and website, exercising and relaxing while Addison takes her mid-day nap.
I still feed Alyssa before school and at night, but somehow by taking away just one feeding during the day allows me to feel less like Alyssa’s “nurse” and more like a typical mom to her. I know that may sound strange, but keep in mind I have performed the duties of basically a nurse for my child over the past four years. Tube feedings, diaper changes, bath times, administering shots, dressing, personal care, you name it and I have to do that for my child every day because she is unable to do them on her own. Any opportunity I have to give that responsibility to someone else I feel a sense of relief, primarily because of how taxing it can be to constantly be my child’s caregiver. All special needs parents need and deserve a break from time to time. My husband and I are very fortunate that my mother is able to care for Alyssa and all of her needs during times we want to go on a date night or have a few hours to ourselves. I feel that Alyssa’s new schedule will give me more of a sense of being her mom rather than just her full-time nurse/caregiver. I want Alyssa to gain that awareness as well because I feel that is vital for our relationship.
Alyssa loves riding on the bus to and from PediaTrust.
Alyssa now rides a bus home from daycare. Something about having them drop her off at home adds a sense of “normalcy” to her daily life. I love seeing Alyssa doing things other kids her age are doing even if they are done in different way. Alyssa has taken dance, cheerleading and horseback riding. It took time for her to get accustomed to all of them. She would cry and gag herself to the point of throwing up at beginning of class, but over time she grew to love them. I accept that Alyssa will have a transitional period with this new environment and that there will be days when she isn’t her happiest. She is a very headstrong, assertive little girl. Add on top of that being non-verbal and unable to express her thoughts and feelings about being in a new place and seeing new faces. I would be throwing a fit too.
Another aspect I have to consider is how this change affects Jonathan. We discuss and decide every aspect of Alyssa’s care as a team. We have become pretty efficient with communicating our emotions, concerns, needs and feelings over the years. We discussed in great lengths all aspects of what this transition would entail and how it would benefit Alyssa, but just as I am having to adjust to the change, so is he. He recently explained to me that it took him time to accept and be okay with someone other than myself being Alyssa’s primary caregiver. Just as I had to learn to trust others, so did he. He expressed that not only does he worry about Alyssa while she is out of my care but also how I am dealing with her absence. He has a lot on his shoulders with work stress and providing for our family financially. I am very fortunate to have such a loving and devoted partner to raise our children with. His bond with Alyssa, as well as our other children, is like no other.
As special needs parents we do our best to ensure our children have the best life possible. In doing so we must sometimes make hard decisions based off of what we feel is best for our child. Many times we question ourselves endlessly over those decisions. We’re only human after all, but it was bestowed upon us to have the greatest gift of all — our special children. We must learn to trust our intuition and believe wholeheartedly that we are making the right choices for their wellbeing. Ultimately what matters the most is that our children are happy and well taken care of. Everything else will fall into place.