Exceptional Child Spotlight
My name is Jessie and my wife, Allie, and I have 5 children, all of which have been adopted through foster care. All of our children have their own special needs from the dramatic experiences they lived prior to coming to our home.
Kade, seen above in the dark colored shirt sitting in the sand, is our 4-year-old son that has Radiosensitive Severe Combined Immune Deficiency. This disease is terminal without a Bone Marrow Transplant. Kade is currently pre-bone marrow transplant. All of Kade’s doctors are at Cincinnati Children’s Hospital and our home is 5hrs away in western Kentucky. Kade’s disease is progressing and he is in the hospital often. Lately, it has been every few weeks. Allie and I have a pretty good routine down when it comes to Kade being in the hospital and the other children being at home. My mother-in-law lives with us. We are very lucky that she is able to stay with our other kids when Allie and I both have to be in Cincinnati with Kade. Lots of times, Allie and I are spilt between having to be away from our other children, which causes them lots of stress and anxiety. Recently, we have been splitting up when Kade has been in the hospital. One of us stays home and the other is in Cincinnati with Kade.
When Kade is home, we have a lot of things that we have to keep up with. Kade is currently on four different prophylactic antibiotics and does airway clearance and breathing treatments four times a day. Kade also has to have at home immunoglobin infusions every 14 days. As you can imagine, this is very time consuming and difficult for a 4-year-old to complete. Kade is active and loves to play and have fun with his siblings. Kade is routinely upset when playing comes to an end because it’s treatment time. Kade’s siblings are usually very willing to play with him during his treatments. One of Kade’s brothers is only 7 weeks older than him and is always willing to cheer him on when he is upset about having to stop an activity to complete a treatment or even when he is in the hospital.
With the diagnosis that Kade has we also have to be very diligent about cleaning. My mother-in-law really plays a big role in making sure this happens. She vacuums and mops our home daily. She cleans counter tops multiple times a day and bathrooms very regularly. Kade has his own room and bathroom and these two places are cleaned daily. Kade and his siblings attend public school, which in turn can result in lots of germs entering our home. All of our children know that they are required to take off their shoes and shower as soon as they come in from school. This routine has been in place for multiple years, so it has become an automatic thing for them to do. If ever anyone feels sick or has a fever, we ensure that they stay in their room for at least 24hrs after the symptoms have subsided. Our children know that anytime Kade gets sick or has a fever he is required to be in the hospital, in Cincinnati, for at least 48 hours with IV antibiotics to ensure he does not have a major illness.
Allie and I have always been planners. We like to have everything planned out and stick to a very structured schedule. With Kade, you never know what something is going to happen. At times, we have to drop everything, pack, and leave for the hospital within an hour. With Allie’s mom living with us it makes thing much easier to be able to allow the other children to continue on with their normal schedules. We also have some really incredible friends that are ready to help in the time of need.
As I said earlier, Kade does attends public school. This requires us to ensure that Kade has many things in place at the school. Kade’s IEP has an attached medical plan that can be changed as needed without having to meet every single time. This plan changes routinely depending on what specific items Kade is needing at the time. We are extremely lucky to have teachers and guidance counselors that are willing to ensure these things are taken care of. We as parents have to be very open and specific in order to ensure Kade’s safety at school. It is very important to us that Kade has the least restrictive environment at school and that he remains in a general education classroom. Kade is unable to have outside play time due to the radio-sensitivity. However, Kade is able to go to another classroom and do centers with those friends while his class is outside. We wanted to ensure that he wasn’t just placed in a classroom and made to sit until his classes outside play time was over.
As parents of multiple children with special needs, we have become very good at knowing that you have to continue to advocate for your children even after you have explained everything. If you don’t feel like something is going as you think it should, ask for a meeting with the teachers and guidance counselors. Be willing to tell them exactly what your child needs! More often than not, parents feel like educators and even doctors should understand what is best for your child because of their diagnosis. The truth is, we as parents know our children best, even if they aren’t biologically ours. Not every child with the same diagnosis has the same triggers or responds to things the same way. If something works at home be sure to share it with the others taking care of your child. We have explained exactly what needs to happen and had to turn around 5 weeks later and have the exact conversation again and prove that what they are doing wasn’t enough. We have also found that transitioning from one school to the next is also very difficult. Each school works differently, even if they are in the same district. Be sure to request meetings with teachers before the school year even starts. Make sure the teacher knows that you are open to daily communication.
There was a time about a month ago Kade’s teacher was calling us about everything. We had to tell her to stop looking for symptoms. The thing with Kade is if you look hard enough you will always find something. His O2 will be too low, he will have a fever, he will be short of breath, etc. Kade is extremely sick but we still want him to be able to live the life as best he can. Truth is we don’t know where Kade’s life is headed or how long it will last but most important is that he lives whatever is left to the fullest.
Most of all don’t be scared of the label! Yes, there will be some teachers that see that label and may assume the worst or vice versa. This is why it is so important for parents to be loud, be present and don’t back down. Make sure that you stand firm for your kids and what you feel is in their best interest.
Thank you to Jessie and Allie for sharing their story with our community. We are so grateful for the time they took to give us a glimpse into their journey.
Blaire Harter, M.A., CCC-SLP
Executive Director
blaire@collaborativecorner.org