Show and tell in preschool—it should be a fun time where the child, with great enthusiasm, shows an item that has significant meaning to the them with the rest of the class. Instead of a state of joy in picking out what to bring the night before, my 4 year old son said “no, I don’t want to.” In the morning, I tried again but I was met with the same resistance and tears. You may ask if my son was just being defiant or having a bad day and I wish with all my might that I could simply say yes, that is it. But in reality my son has Childhood Apraxia of Speech and Sensory Processing Disorder. He will be five in May and recently he has become increasingly aware of his differences in relation to his peers. Luckily, he has an amazing teacher who helped me devise a way for him to participate in show and tell by talking about the Lego shoes on his feet and tying this to his Lego collection at home. But that did not stop me from bursting into tears on the way home from dropping him off at the school.
Although I had suspected a serious problem since he was about 18 months old, he has only been recently diagnosed properly for disability. I am still coping with the fact that this is now his reality and the uphill road we as a family are facing. Even though I have tried to maintain my normal positive attitude, I have found myself slowly slipping into a variety of emotions from sadness to anger. I have wanted to be in isolation more than usual to gather my thoughts . I sometimes cry at the drop of a hat. Somedays I am so exhausted I cannot formulate a single complex thought. Sometimes I forget what has been said to me five minutes after it has been said because my mind is preoccupied. It has been a learning experience on so many levels. I am now on the other side of the table. In the past I have been the helper, the counselor, and the supporter. Now I am in this humbling position of seeking help, which I must say has never been easy for me.
When I began to analyze my feelings I saw a similarity with the stages of grief proposed by Elisabeth Kugler-Ross. One may point out that I have not lost my child and that is very true. I have three children and I cannot imagine , even for a second, the experience of losing a child through death. I am fortunate for the heath and wellness of my children. But the grieving process does not always mean loss through death. According to Maud Purcell, LCSW, it can be loss of job, loss of health through illness, divorce, etc. When a child has special needs there is a sense of loss…..loss of your expectations for a “normal” childhood with “normal” track of meeting milestones. There is a deep sense of fear because no one can tell you the prognosis or if your child’s struggles will continue in adulthood. Self-blame over runs your mind……did I do something to cause this?…..if I would have went to the right therapist sooner would he be speaking clearer by now?……..am I not doing enough with him at home? The litany of what-ifs plague your mind and it begins to wear you down.
Therefore, I do believe in certain sense parents do go through a process similar to grief. A process of emotions that come and go until we reach a sense of acceptance. Even if acceptance is reached, strong emotions may flood us when we go to an IEP meeting or we have a difficult day. Here are the stages of grief and a brief example of how I experience each stage.
Denial and Isolation: For a long period of time I focused so much on my son’s strengths that I minimized his weaknesses. Well meaning individuals would comfort me by saying “he will grow out of it” and I held on to those words like the gospel. We still sought help at the appropriate time but I settled for it’s just an articulation disorder because it came from a speech therapist. I wanted it to be true even after researching on apraxia and having a “hunch” that’s what was really going on. His sensory issues were not initially addressed because he did not meet the requirements through the school system at three years old. At four years old he suddenly qualified with significant delays. The slowness of the school system and lack of appropriate assessment put my mind at ease at the time and I accepted for awhile that I was “over reacting”. I still go back and forth with denial at times but with less frequency than in the beginning.
Recently, isolation is something I have found comforting and lonely. My sense of humor has been lacking lately and it can be difficult to be around those having a good time when I am feeling down. It can also be difficult to focus on being present with others on days when my mind is preoccupied. At the same time, some days it can feel good to be around others when I feel down but yet I am too busy running around to participate in activities. Therefore isolation takes hold in a different manner.
Anger: I am, by nature, not typically an angry person so I struggle with this intense emotion popping up more frequently in my life. It ranges from irrational anger at myself to anger at professionals we have seen who have not been helpful. Anger at dealing with the insurance company . Anger at having to drive 45 minutes one way twice a week to receive proper diagnose and treatment. Anger at an IEP that does not portray an accurate picture of my son. Anger that my son cannot receive high quality individual treatment through the school system that I pay taxes for each year but have never used because we homeschool and use private school.
Bargainning: I think we all have moments in the midst of a struggle where we bargain with a higher power for anything but our current situation. Watching your child increasingly struggle as he get older because his difficulties become more apparent is so heart wrenching. I would give anything for him not to have to struggle with each word and to be misunderstood by everyone. But the reality is he has to overcome these hurdles and he will in his own way and his own time.
Depression: There can be periods of sadness and lack of energy where one feels that even getting out of bed is a major challenge. It’s no surprise when dealing with a roller coaster of emotions. Also, the day to day challenge of working with your child can be exhausting. Sometimes it can take 15-20 minutes for me to just understand what my son is trying to tell me because he is a story teller and loves to communicate. He “speaks” in paragraphs but very little is intelligible without a context. Therefore there can be occasions when I cannot not figure it out . It is mentally and emotionally draining. Keeping up with a child with sensory issues is physically demanding. He has challenged my fear and sanity on so many levels! Throw in the dynamics of siblings and it is no wonder we feel like pulling our hair out.
Acceptance: This should be the final stage to go through and we should feel wonderful right? Prigerson & Maciejewski define acceptance as an increasing acceptance of loss , mainly in terms of cognitive and emotional acceptance, that leads to a resolution of grief. In my opinion we may go through acceptance many times before a resolution. We may think we are at emotional peace until we have to face another hurdle, like beginning elementary school or attending an IEP meeting, and our emotions send us flying back to denial or anger.
**Remember, grief is a process unique to each individual and one may not experience all of the stages. An individual may not experience the stages in order and individuals tend to move back and forth between stages. Although it is questioned by some how relevant the stages of grief are for people experiencing loss, I have found myself experiencing them with no predictability in my day to day life. ***
I must admit, this has been painful to write because it shows a vulnerable side of me I rarely display, but I hope it paints a picture of what it is like for someone to struggle when their child has special needs. It is a whirlwind of emotion from day to day and sometimes even hour to hour. My goal of this post is not to be negative but to let others who are struggling know that you are not alone. There is no right or wrong way to feel and your feelings are validated because it is your personal experience. Please know you are not alone!
Although grief is depicted as a process one goes through when experiencing a loss, it is a not a neat and orderly process. Human emotion does not work that way. We are complex creatures going through complex experiences over a long period of time. The emotions and feelings are not limited to those listed above. There is also fear, jealously, loneliness, and resentment to name a few. But intertwined with the negative are also feelings of great joy, happiness, excitement, and pride. Our children have to struggle more than the average child and that makes their successes, no matter how small, bittersweet in our hearts. After all, there is no greater joy in this world than hearing “I love you” from your child, especially when the first time you hear it is not until he is over four years old.
I am curious to know how others felt when hearing about their child’s diagnosis/diagnoses. Did you go through any stages of grief? Any other strong feelings not listed above? Please feel free to comment below and help others recognize that they are not alone. Stay tuned for my next post where I talk about positive strategies that have worked for me in moving forward to provide the best environment for my child , my family and myself.