When a Child Struggles the Parent Also Struggles

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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.

 

Reference:

Prigerson HG, Maciejewski PK. Grief and acceptance as opposite sides of the same coin: setting a research agenda to study peaceful acceptance of loss. Br J Psychiatry 2008193435-7.   Abstract/FREE Full Text

 

 

About Jennifer Walker, MS

I currently blog about mindfulness, meaningful life-learning, Montessori and Childhood Apraxia of Speech.
This entry was posted in Childhood Apraxia of Speech (CAS), Special Needs and tagged , , , . Bookmark the permalink.

7 Responses to When a Child Struggles the Parent Also Struggles

  1. Pingback: Nine Strategies to Maintain a Positive Outlook When Your Child Has Apraxia or Other Disorder | The Passionate Learner—-Jennifer Walker, MS

  2. luckieststar says:

    This post didn’t just speak to me, it yelled. Smacked me in the face. I could have written almost this exact same thing. Becoming the helpee after always beinng the helper, recognizig the grief. I’m a year into trying to find a diagnosis for my sons neurological issues. So glad i stumbled upon this post. Thank you ❤️

    Like

    • I am so glad you found the post helpful. Being from a counseling background I am used to looking for the positive in everything and I wanted to present the other side. There are times when we have these “negative” thoughts. I really wanted to normalize that for people. Not to dwell on the negative but to recognize that it creeps up on you. I sincerely wish you the best of luck as you find answers regarding your son. Not knowing exactly what is wrong can be extremely frustrating because you do not know what direction to take when it comes to helping him.
      Take care!

      Liked by 2 people

  3. holisticjen says:

    Dear Jen, You visited my blog (Thanks, I appreciate that!) so I checked yours as well. It’s nothing short of delightful, and I love how you have me interested to see what the positive strategies of dealing with the apraxia will be. My life and work is the law of attraction, so I also want to add that you mention feelings–and feelings are the indicators of where you are at on any topic–if you are sad or isolated, you are looking away from the good your child CAN do or become. If you are happy, then you are feeling optimistic. That is the big difference in how you will experience an illness or challenge with a child. Do you believe that there is one narrow way that speech help will come to your son-and is it in the form of teachers and therapists only? Or, do you believe that there are many ways–being optimistic, being happy, eliminating your fears, and allowing the good that you want to flow. This good will literally come out of thin air and into your experience IF you are focused on the goal–great communication. You can always PM for more info, but I’m just giving you a brief way of looking at how Law of Attraction works. I see health and wellness for you and your family. You are loved!

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  4. Pingback: My Apraxia Awareness Message : We Need More Positive Experiences | The Passionate Learner—-Jennifer Walker, MS

  5. Every doctor’s appointment, every evaluation, and every IEP meeting sends me down a rabbit hole. I sweat before hand, get defensive during and after I need to nap or have a drink.
    Our struggles began when I also reported to the pediatrician that something was wrong with my son’s speech at 18 months. My doctor told me to MAKE my son speak, so for 4 hrs I tried to make my son say milk. I cried each time but held my ground. It was the worst day of my life, something I regret now but I didn’t know what else to do. That same doctor fought me for 4 mouths for a referral to a neurologist. I finally got the referral and then we got an official diagnosis! I found perseverance and anger gets a lot done when others would crumble. I am comfortable with justified anger, I have a penchant for fighting so now I fight for my child.
    I found BabyNet online and asked for an evaluation online and the next day called my pediatrician and asked him to send a referral to BabyNet as well. I had my son evaluated but was denied services because he was cognitively fine but linguistically delayed but not enough to raise a red flag, so we were referred to Parent Smart, I thought maybe I was crazy, was I trying to make something out of nothing. Is he just a late talker? Have I not read enough? Do I not ask him to talk to me enough?
    The Parent Smart worker asked us to check his hearing but did not take the results for her file. I had my son evaluated again by BabyNet before he turned 3 and because of the hearing test we had done 6 months prior he was deemed qualified for services. I was so angry that we lost 6 months of services from BabyNet because the hearing results were not included in his file.
    My son now receives services from Rock Hill Schools (2x’s a week for 30 minutes) as well as private speech therapy (1 day for 1 hour). It is the beginning of a long journey. I am blessed to have a husband who stands with me when I am in fight mode, and keeps me grounded when life goes haywire. We have an extended family who geniuning want to help but are not sure what to do, so they just love him. And honestly, a toddler needs love and acceptance which he has in abundance. The rest we will tackle as it comes.

    I look forward to reading more of your posts. I would love to know how you selected schools for your son? It is something we are exploring for our son.

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    • Thank you for finding my site and I’m glad to hear you found my post helpful. I am sorry to hear about the difficult road you are facing. Apraxia is rough, progress is extremely slow, and there are many battles to face. I have researched endlessly to educate myself in order to become the best advocate for my son. I empathize with you because I’m three years in to IEPs and I still have yet to leave one without breaking down in tears afterwards. Not because they are all bad but because there is still a long road ahead.

      The best advice I can give is to let your child enjoy life as much as possible. Focus on his strengths. Attend the therapies and practice at home but keep it lighthearted. They can sense when we are worried and pressure them to speak. Once my son turned 5 I saw a huge increase in speech intelligibility. His kindergarten year has been an overall positive experience. I chose The Children’s School, which is the public Montessori school of choice. He went to a Montessori preschool too. The Children’s School has a tuition based 3K and 4K, which I highly recommend. Also, they have a phenomenal speech therapist who has experience with apraxia. She was the third therapist we have seen in the RH school district and the only one I have been able to develop a good working relationship with. A Montessori school has been beneficial for my son in many ways. The hands on materials and open work cycle really help his executive function, sensory processing and fine motor skills. I believe this indirectly helps with the motor planning deficits with apraxia. I would love to get together with you some time because it is difficult to find others with apraxia. My email is jenaclauson@yahoo.com if you are interested. Please email me with any questions you may have. I read somewhere that apraxia is like running a marathon. It is a long, emotional journey. The anger and other emotions are normal reactions. We want what is best for our kids. I am happy to hear you now have a proper diagnosis. That was a huge relief and turning point for me because proper treatment could occur and people started listening. Please remember to take time for yourself to relax and recharge by doing what you love. And don’t give up, advocating is exhausting but worth it in the end. 😉

      Like

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