In my previous post I talked about my personal struggle with emotions in relation to my son’s apraxia and sensory processing disorder. It can be be long uphill battle if we let our negative emotions get the best of us. Although it can be difficult sometimes, I am trying my best to remain positive and face this with a winning attitude. Progress is slow and sometimes even stagnant , so it is imperative for me to approach this on a whole new level. I have had to learn to relax and trust that it will work out in the end. It may take years of therapy but we will get there. I would like to share some strategies that currently work for me. They may or may not work for you but my hope is that my list will give some inspiration for those struggling to make it day to day.
1. Think in terms of small , slow progressions . Think of progress in terms of their individual successes without comparison to “normal” development.
There is no way to predict how fast or how slow one will progress. For long periods of time it may seem like no progress is being made and then suddenly a big leap happens. I have found it important to look for the small individual progresses and stop comparing him to his peers. He is in his own league and comparing his abilities to the “norm” only worries me. Bittersweet moments for me include :when a phrase or word he’s been using now becomes clear, hearing him count to 10 with minimal errors, and seeing a stranger understand him in a known context. After over a year of therapy we are seeing these moments at 4 years of age. These examples are not of huge significance for those with a typical four year old ,but to a parent with a child who has apraxia it brings tears to the eyes. Each clear word or phrase that comes is like a window into his soul. I remember the first time he said “I uv ew mama” (I love you mama) at four years old. I had tears of joy as he squeezed me tight with his hug. I had been telling him “I love you” since he was born and to hear the words come out of his mouth was and still is an indescribable feeling.
2. Cherish their strengths and their passions
On most days my son does not really see himself as different. He attends a small, nurturing Montessori preschool and we have a wonderful group of homeschool friends. He currently sees speech and occupational therapy as places he goes to “play” and have fun. One of his strengths is he a gregarious, lively extrovert who loves attention. His therapists adore him and he loves his “play” time. He loves books, Legos, music and coloring. These are tools I use to help him learn because these are his passions.
3. Find YOUR zen
My son is a high energy, active extrovert with sensory issues and I am a quiet introvert who is easily overstimulated. While he is fun and full of life, he is also exhausting physically and mentally . The trips to preschool, therapy and extracurricular activities of my older kids are also tiring . In addition, I homeschool my two older children. Therefore, over time I have had to make time for myself to relax and recharge. I love taking daily walks in the evening while listening to my headphones. I get to zone out without interruption and clear my mind. The physical exercise is also good for the brain and helps me to stay fit in order to keep up with my active preschooler. Each morning I try to do some form of mindfulness exercise to keep me centered and in the present. Other activities that relax me include reading and photography. Although your schedule is probably full with appointments, it is important for you to make time for yourself and still do activities that you value. You will feel refreshed and better able to face the demanding but rewarding job of taking care of your child.
4. Confide in your close friends and family
We moved 1000 miles away from family about three years ago so it has been a struggle for me to not have my parents or in-laws near by to help. I am very fortunate to have the support of close friends. If you need to talk or you need some respite, do not hesitate to ask those close to you. They may not ask you on a regular basis how you are or if you need help but that does not mean they do not care. It can be difficult to know what to say or how to offer help to those in need. But I have found whenever I have asked or when I have needed to vent they have always been there for me. Being afraid of being judged or feeling weak have been the two main obstacles I have had to overcome. But the truth is I could not have made it through with my closest friends and family.
5. Find a support group
I have yet to seek out an in-person support group but I did find a couple of Facebook groups . There is something therapeutic about seeing stories and updates from parents of children with apraxia. Hearing others talk about struggles, triumphs, and tips give a sense of relief that you are not alone. It is also bittersweet to hear the progress of the elementary children because it gives me hope that in time it will all work out. I can get caught up into believing that the present situation is permanent but being in a group I am reminded how progress is slow but does happen over time.
6. Have special one on one time with your other children
A strong feeling of guilt sometimes overwhelms me because I have a significantly less amount of time to spend with them recently. I have to make a conscious effort to make sure we are spending time doing fun things together. It can be something extravagant like going to a show but it can also be simple such as playing a game or going on hike alone.
7. Date your spouse
It easy for the exhaustion and stress to take over leading to increase tension in the marriage. Taking some time to go out for a couple of hours together can help you reconnect and have fun.
8. Educate so you can advocate
It did not take me long to realize that I needed to educate myself on speech disorders and sensory processing disorders in order to help my son get the proper treatment. I tried to be relaxed and not flash my master’s degree card but I soon realized that it was going to be up to me to be not only the parent, but an advocate. I know the professionals do the best that they can, but in reality my son is one of many that they are treating. In addition, they only see him in a limited context where I have daily interaction with him. Therefore it is imperative to know anything and everything you can about your child’s problems. Keep a journal of behavior observations , strengths and weaknesses. One place I see you will need detailed information is the school system . IEP’s paint a narrow and sometimes mostly negative or inaccurate view of a child’s abilities. You may find yourself advocating for certain treatment in the school system or advocating for more sessions to be covered under your insurance. It can be frustrating and overwhelming but the more you arm yourself with knowledge, the more confidently you can advocate for the best treatment for your child.
9. Eat well and sleep well
For the most part we eat a whole , real food diet without a lot of added sugar or dyes. Not only has this helped my son but it has also helped me by giving me increased energy and the fuel my body needs to sustain energy throughout my long days. I also try really hard to get enough sleep. It is easier to be more relaxed, energetic and maintain a positive attitude when I am well rested.
How do you maintain a sense of balance on a daily basis? I would love to read your strategies in the comments below!