We had the pleasure of connecting with April, the blogger and mom behind Living by Faith, and are so excited to share this interview with our community. She’s an amazing blogger and parent, and wrote the poem “Special Needs Mom – A Look Inside,” and created the video “I do not have special needs.“
After Levi’s birth, there were so many things I wanted to say to everyone. I wanted to update friends and family on his health, but more importantly, I wanted people to know how we were feeling. So many people seemed to feel so sorry for us, and I wanted them to know that there was nothing to be sorry about. We were proud parents of a new baby boy, and we wanted our friends and family to be happy for us. I had a lot of friends tell me how they were following along, and it kept me motivated to continue telling our story.
Tell us about your child’s down syndrome diagnosis?
We did not do any prenatal testing, and there were no soft markers or indicators of Levi’s condition during my pregnancy. He was born around 1am, and the room got quiet. He looked different to me, and we knew something was wrong, but we didn’t know he had Down syndrome. The next morning, the pediatrician told us about the markers he saw and suggested we do a blood test. We got a positive result for Trisomy 21 when Levi was one week old.
What were your main fears and concerns when you received this diagnosis?
I automatically began worrying about his adulthood. Would he live with us all of his life? Would he be able to groom himself? I worried if our friends would not want to be around us any more. I worried that people would make fun of him. It’s really ridiculous when I look back on it.
What advice do you have for parents with newly diagnosed children?
If I could change one thing about all of this, I would have spent his first few days looking at him as a baby, not worrying about his adulthood. Things changed for me when I contacted our local Down syndrome association. The social worker at the hospital handed us a tote bag with a parent information packet from the Down Syndrome Association of Central Kentucky when we left the hospital. I waited until we got Levi’s blood test back before I called. Talking to other parents that understood my feelings was extremely helpful to me. One of the hardest parts in the beginning is feeling alone. The first person I spoke on the phone with told me about her 4 year old daughter with Down syndrome being able to read, and that gave me such hope.
What inspired you to write your special needs mom poem?
A lot of new parents share a popular poem called “Welcome to Holland.” That poem just didn’t resonate with me. I don’t like how the end of it says the pain “will never ever, ever, ever go away.” Still I saw it shared on website after website as an encouragement for parents. It just isn’t that encouraging to me. I wanted something that was real and honest but more empowering and positive. I am so happy that it is being shared and people are connecting with those words.
Tell us a little bit about the “I Do Not Have Special Needs” Video
For my job, I present seminars to preschool teachers. In one seminar we talked about children with “special needs,” and a teacher came up to me and told me her high school son has Down syndrome. She said, “You know, he doesn’t have ‘special needs,’ he has the same needs of all other kids. Those words really stuck with me, and I wanted to do something to express the deep meaning of that thought.
What is speech therapy and why is it important for a child with down syndrome?
Speech therapy is bringing in an expert to support you as you help your child develop speech. We started Levi’s speech therapy at 6 months old. We were given suggestions to help him with swallowing and eating, and I learned things I’d have never known had it not been for his speech therapists. I was grateful to have the support from an expert, and I think early speech therapy was very beneficial for strengthening Levi’s mouth muscles. It helped him to eat and drink properly, which both were important foundations for speech. We recently found out that Levi has speech apraxia, which is something traditional speech therapy does not help. I have sought out some local experts in this field to help us, and we are making progress. I am currently working on an article for my blog to share what I’ve learned.
What is physical therapy and why is it important for a child with down syndrome?
Children with Down syndrome usually have low muscle tone and reach their physical milestones like crawling and walking later than other children. It is very important for a child with Down syndrome to have physical therapy, not only to help them reach their milestones, but to make sure they are doing their movements the proper way. Some children find a way to get where they want with the least amount of effort, which can keep them from strengthening the muscles they need to move properly & easily in the future.
What is occupational therapy and why is it important for a child with down syndrome?
Occupational therapy helps with daily living skills. Many times for youngsters with Down syndrome, this means helping develop the fine motor skills of holding eating utensils, pencils, etc. Occupational therapy is beneficial for children with Down syndrome that have difficulty eating. An occupational therapist can also help with sensory problems, such as difficulty with textures on the skin or in the mouth. Levi’s occupational therapists have helped him to write his name, try new foods, and feel comfortable touching gooey textures like finger paint and certain foods.
What is an IFSP? Why is it important for children with Down Syndrome?
An IFSP is an Individual Family Service Plan. A service coordinator works with a family to develop goals and supports for a child that qualities. A meeting is held every 6 months to make updates. The IFSP is the starting point for therapy supports being given to a family. More people are familiar with the term IEP (Individualized Education Plan) which would be started when the child enters school. The IFSP is done for birth to age 3. An example of an IFSP goal would be, “Levi will be able to sit unassisted.” The family would be supported by being provided with physical therapy to help the child reach that goal.
Did you use Early Intervention Services? Were they helpful and what did they do for you?
We had our first IFSP meeting when Levi was 4 weeks old and got therapies through First Steps in Kentucky. The therapies were very beneficial for our family. A child receiving therapies will still be behind on developmental milestones, and there will be times a parent doesn’t see the progress they hoped for, but I think therapies should still continue. For me, it was just a relief to have the support of experts in different fields to get advice from and to feel like I wasn’t alone. I the feeling of having a team working together towards his success. It is very overwhelming to think your child’s development and success all depends on you, especially when you don’t know much about their diagnosis.
How do you manage all of the doctors appointments and a busy schedule?
I have to keep a positive attitude about how the appointments and therapies will help him. I have become friends with his therapists which helps, and when I don’t feel like we are clicking with someone assigned to us, I request someone else. I also have to make some time for myself so I can recharge and refresh. Sometimes I drive him 2 hours to see his ENT. I’ll make sure I get to a favorite restaurant or treat myself to a special coffee on our way so there is something special for me thrown in to a long trip like that.
What do you look for in a childcare provider or daycare for a child with DS?
I want someone that sees Levi as a blessing, not a burden. He stayed home with me until he was old enough for preschool, and when he had some testing done before school started, the teacher that did his testing fell in love with him and requested him to be in her class. She has been wonderful. She learned the signs he knows in order to connect and communicate with him, and she has helped his classmates accept and understand him. I couldn’t be happier with his preschool experience.
For parents concerned about other health problems such as hearing, sight and heart problems are there things to keep an eye out for? Anything to do to help make sure that their child is getting what support they need?
The National Down Syndrome Society has a great website with a section all about health concerns. Their health care guidelines outline standards of care and things to look out for and tests to have done. https://www.ndss.org/Resources/Health-Care/
Do you feel like support groups or parenting groups are helpful or beneficial?
Absolutely. Our local meetings for parents held by the Down Syndrome Association of Central Kentucky have been a very important part of our journey as a family. I think finding other parents to relate to is one of the most important things we have done.
Are there particular elements of parenting your child that are stressful?
I am on high alert for his safety at all times, which is draining. I am afraid of him walking off and getting into a dangerous situation or getting lost. That is very stressful to me.
I try not to stress about his milestones or things like that. He eats very few items, but I feel like we will have enough other things to worry about in his lifetime, so if he wants pretzels for breakfast, and it isn’t harming his health, I am going to let the boy eat pretzels. He will have plenty of more important struggles to overcome, and I don’t have the energy to stress over every little thing.
Is it common for children with down syndrome to have sleep difficulties and what strategies can parents use to help overcome these?
Sleep apnea is very common, and I would recommend all children be tested even if they don’t seem to have symptoms. Our ENT specializes in children with Down syndrome and had us do a sleep study even though Levi didn’t really even snore or have other symptoms. He had obstructive sleep apnea and needed his tonsils removed. He had that done when he was three and started sleeping thought the night after the surgery, something he had never done before.
Do you have any financial tips or insurance tips for parents?
Find out if there is a Medicaid waiver program in your state and apply for it. And if you get denied, fight for it. We have been denied year after year. The denial letter comes with directions for writing a letter of reconsideration. After I send in my letter with supporting paperwork, the decision gets overturned and Levi receives benefits. It took a lot of research on my part, but it was well worth it. Many parents are denied and give up. I think it is important to keep working towards it if you know your child qualifies.
What tips can you give other parents about meeting with professionals and providers?
View them as your teammates. They are there to help and they are experts on some of the issues your child may have. They will be there to celebrate with you and help your child reach many goals.
How has your child enriched your life?
Levi has helped me to focus on the things that really matter in life. The acceptance and love he receives in our community and families has warmed my heart and helped me see the good in people. Going through these first 4 years of his life and seeing that this journey isn’t as scary as I though it would be has made me feel stronger and braver than I ever imagined so I am going after other goals in life. I have always wanted to run and started for the first time last year. I have already run a 5K and a 10K, and I haven’t even been running a full year yet.
More about April
You can find April on her blog
and on
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