I decided to interview a family friend whose son, Christopher, was pretty much diagnosed with Down syndrome at birth. Being a family friend, I have been around Christopher on occasion for a few years now. His big smiles and hugs or silly dances can brighten up anyone’s day. In fact he is one of the reasons I decided to peruse special education.
Christopher was first officially diagnosed with Down syndrome upon being born. Alyssa, mother of Chris, told that she and her husband had no idea that their son would be born with this disability. She said the doctors had indicated that he had a heart defect, but there were no other signs pointing to her son having Downs. Chris being born prematurely was placed in the NICU
for precautionary measures. The doctor soon after shared some concerns relating to a couple of markers that Christopher was showing. “ They took a blood sample and sent it off for testing to confirm the possible diagnosis,” says Alyssa. The test came back positive for having Down syndrome. I personally can imagine this moment being very upsetting for any parent, a new
parent especially. No one necessarily wants their child to have any sort of disability but if put in this kind of situation the parent will express no less love for that child, and frankly, “the bliss and joy of having a child outweighs anything felt in that sad moment.” Alyssa said she knew at times taking care of Christopher would be hard, but it was all worth it.
Alyssa had the loving support of her family and close friends especially her one friend Joanne, who also has a son with Down syndrome; she told me that this made everything a little easier. “ I knew early intervention was essential for my son,” Alyssa states. I now know this as well having learned about many disabilities and the crucial developmental stages in a child’s
early years. The first years of life are a critical time for development; children go through the most rapid and developmentally significant changes during this time as they achieve the basic physical, cognitive, language, social and self-help skills that are the foundation for future progress. Christopher began his early intervention therapies at only about 4 months old pretty much until age three when he would enroll in kindergarten. Alyssa experienced no real troubles
obtaining these services for her son as he was qualified under IDEA, and IDEA mandates these services. Physical therapy, occupational therapy, as well as speech and language therapy as he got a little older were provided at service to him, Alyssa told me. She says that the unsurpassed feeling was actually seeing her son progress. I can only imagine the way she had felt at this time.
Being put in the situation where you have to take care of this baby almost in an unknown world, as it differs in its ways of raising that baby compared to any baby born without a disability. Watching her son progress and seeing it with her own eyes I definitely believe is reassuring and in the end realize that raising your child will be one of the most rewarding things in life. Christopher is now nine years old. “It wasn’t the Downs I was concerned about most, but more so the heart defect.” Alyssa was told that her son Patent Ductus Arteriosus (PDA). If the Ductus did not close by itself in three months, he would need to undergo heart surgery to close it. “I couldn’t imagine sending my baby into heart surgery at only three months, this is what scared me most,” said Alyssa. I was informed he did indeed need the surgery and everything went well, although it delayed his progressions with the early intervention during his recovery period. Other than that, “my biggest concerns would be for him making friendships and being successful in the future.” After reading the chapters in the book and completing the modules its evident that often times children with disabilities find it challenging to make these types of connections, whether it
be friendships or just a stable connection. I think Alyssa knew this too upon Christopher first starting off school, but one again expressed her gratitude for Joanne as she helped her through this and often times the both of them and their sons would go to the park, or pool, which she said helped a lot.
“At times I felt lost,” Alyssa told me referring to getting involved for the first time in the school system and meetings. I see this being as an almost mutual feeling for a lot of parents of a child with a disability when figuring out the school system. We’ve talked about it in class, half the time during IEP meetings terms are thrown around that the parents and peers may have no clue of the meaning, and communication needs to be strong. Alyssa agreed and said that, “Thankfully I
was able to contact Christopher’s teachers through email pretty much whenever and they would always get back to me in a reasonable time, or even some teachers had set up times to talk if I had any questions, concerns or anything.” I think this level of communication is essential to have your child benefit most in the classroom. Referring to the terminology Alyssa told me about something that helped her very much in following along during the IEP meetings and contributing to the best
of her ability; for every meeting she brings a little notebook so she can jot things down or write down terms that she can later look up. “For me this is my go to, and if I still don’t know something after I shoot an email to the teacher,” says Alyssa.
Personally I think to some extent inclusionary practices may depend on the severity of a disability in some aspects, like if a child has inappropriate behaviors in certain situations that may harm themselves or harm others. But for the most part I think ALL children should be included. Alyssa agrees, and is thankful that her son was able to participate in things like recess and was able to play along with the other kids. She says, “If a child can do it without causing harm, let
them,” I think this is a great way to put it. I mean why should they be excluded? Last year I played in a recreational basketball league for fun with all my friends, we had one more spot to fill, and we were contacted by the man who ran the league because he wanted make sure we wouldn’t care if this girl Annie filled the last spot on our team. None of us did. The first game Annie showed up, we learned she had Down syndrome. I never missed a game that year because it was always amazing to watch her play and celebrate after she made her shots. We were all her biggest fans. I think this proves that no one should be excluded because of a disability; if they want to play or take part in whatever, let him or her. I shared this story of mine with Alyssa too, and she very much enjoyed it and could relate as Christopher was currently playing on a peewee
Tee ball team. She says she will never forget the look on Christopher’s face when he got his first hit and made it back to the dugout to be cheered on by his teammates.
When asking Alyssa if the school district was supportive throughout Christopher’s schooling I was very interested in what she was going to reply. After reading the chapters and learning more about the parent interaction within the schools and IEP meetings and found out that a lot of the times the parents are disappointed and fed up with the school system, I felt that her
response could of went one of two ways. Surprisingly enough Alyssa said the Souderton School district has been “nothing but supportive so far.” She explained situations in which she had complications where Christopher needed to take a short leave from school and they helped her and were understanding, and were always supporters of Christopher’s hard work and were huge
advocates of him in the classroom as well as out of the classroom. “This is all I could have hoped for in Christopher’s school experiences,” says Alyssa. I’m sure this was a huge relief on her being a mother of a child with a disability and made the family quality of life a little better and less stressful. The areas she mentioned where she may have disagreed somewhat with the schools opinion was where Christopher would take his tests. They suggested that it would be better to test
else where other than stay in the classroom. “At first I did not like this,” she said. “I didn’t want him to feel excluded in any way, this is what I was scared of,” she then told me thinking about it more it was only for small parts of some days and that it really did make a difference in his test scores. “It allowed him to focus more on the task and complete in timely.” Accommodations like this are seen throughout many other disabilities as well. I think it’s important for one to realize that not one accommodation suits all but the waters must be tested and see which gets the best results, for Christopher this was simply a change in environment. Alyssa explained to me that other than that one situation she cannot really think of any times where a disagreement was reached and became a real problem. Once again, after reading example from the book of people’s
experiences with school systems I think Christopher and Alyssa got lucky and were fortunate enough to be this supported, not only by friends and family, but by the school district itself.
For IEP meetings, Alyssa told me that she has had both “the good and the bad.” “The firstone I attended was slow.” She explained that the meeting was kind of just an unknown thing being her first time. She wasn’t really sure too much what was expected of her, and once again said the terminology got a bit much after awhile. “As they went on though they got better,” she said, and she formed stronger relationships with his teachers with time, and came up with her book of notes that she brought to jot things down in. She told me, “other times it was just a lot.” Alyssa explained a time Christopher was struggling somewhat with material and was becoming frustrated and would act up. This is not anything a mother wants to hear, and from this course I
learned that bad news needs to coincide with some good news. In IEP meetings if one sits down to be told all bad things, I can only imagine how disheartening this may feel.
This optimism was brought back when Alyssa told about the time Christopher had made a new friend in his class. For any child with disabilities it can be challenging to relate or respond and interact with other children in the classroom or out of the classroom. Often times ‘typically developing’ children may almost be scared away from talking or interacting with the
student with the disability perhaps cause its something they are not really familiar with. Alyssa told me she saw this with Chris in some situations but in others he fit right in, like on his Tee Ballteam; sure the kids knew he was a little different but that didn’t change anything as they cheered him on as he ran the bases. “Christopher came home one day from school, ecstatic, smiling from ear to ear, because he got invited to some boy in the classes birthday party; I couldn’t help but
smile myself.” Thinking about this moment Alyssa shared with me, I think this is a prime example of what all mothers hope for their children, disability or not, is acceptance. Sometimes this acceptance has impact on the child’s siblings too. Alyssa is a single mother with only one son, being Christopher so I could not get her opinion or feedback on this, but I know I’ve seen
situations in which siblings get made fun of for having a brother or sister with a disability, or evensomething like using the ‘R’ word so freely. I personally have seen this happening in school and have done everything in my power to stop it, as this behavior has no place in this world.
When I was asking Alyssa how involved she is with the school, I kind of knew the answer before hand judging by her stories and experiences. “Very,” says Alyssa simply. “ I am constantly having conversation via email, or on the phone with teachers making sure everything is going good.” This communication proves to be essential and I think this can be seen in a child’s progress. “IEP meetings I try to be as involved as I can, and make sure all comments and concerns are addressed,” says Alyssa. This too is essential in my mind, everyone needs to participate and not only that but a balance of power needs to be there. Expressing both comments and concerns creates a level of balance that will benefit the child the most and possibly make
notice of any change in IEP the student may need.
This level of communication makes the job easier for all involved I can imagine. When asking Alyssa about the do’s and don’ts of communicating, she made it clear that yes, texting and emailing are great for sending a quick question that can be answered within some time frame, but also made the point, “don’t abuse texting and email,” at the same time. She explained that things
are better off spoken about whether it be on the phone or even in person. She also made a point that teachers need to make sure they are being clear. “At first I wouldn’t even know what to say at times because I had no idea what a term was,” says Alyssa, with more knowledge or a little background I think this may be a little easier and fixed. As she said, “Don’t assume we are
experts because our child has a disability,” which is a good point. Just as a teacher learns more and more on the way so does the parent. A do for teachers she exclaimed was just being open to email and text, and for everyone to understand that people have different things to do and are busy, but to trust that they will do their best to get back to you in some sort timely manner.
After completing this interview I definitely think I have a better image of what it truly would be like to care for a child with a disability; while it can be very tiring and stressful the end result is so rewarding and a generates a feeling that cannot be matched.