Without a Crystal Ball

Our Journey through Chronic Illness

When I was a child, my goals were to be in the FBI, a lawyer, a famous writer, or a top executive of an organization. Never one time in my life did I tell anyone that I just wanted to be a mom or a wife. It just was not a part of my dreams or life goals. I successfully completed my college degree, and I went on to start climbing the corporate ladder when I finished at 22 years old. My life was pretty successful. I bought my first home at 25, owned a nice car, and was able to live a fairly comfortable life. It felt good to be meeting those goals and dreams. However, then I met my now husband, got married and we got pregnant within a year of being married. My plan was to still continue to work. I had been able to juggle a lot in the decade I had been in the corporate world, and I thought I could most certainly juggle a child too. Unfortunately, that was not the plan for us. After my son was diagnosed with several very serious illnesses, I was unable to meet the demands of my high pressure career and care for his very serious needs. After 3 years of doing it all, I left my employment, my large pay check, and I started my full time job of caring for my son.

I looked around and started talking to other parents in the community of children with special needs and medically fragile children and I noticed a trend. I was not the only person that was forced to make a choice between my career and my child. There were times I would sit up at night and wonder why this happens so frequently to this community. Slowly I took stock of what had gotten us to this place, and I realized just how this unique situation is incredibly incompatible with working. In fact according to a survey done by The National Survery of Children with Special Health Care Needs more than 30% of parents end up leaving their employment to care for their child. This survey was just a sample size, and based on my own experience in this community I would say that number is far greater than 30%. I spoke with other parents to find out why they left, what happened, why were they in this position, and here are the top 5 reasons I have found.

1. Lack of Daycare facilities for children with Special Needs

Daycare is about the only way any parent can work and have a child. Whether you send your child to a daycare facility, a home daycare, have a nanny or a family member watches them, someone has to be responsible for that child while you are working. For families where their child has significant needs, finding adequate care can be impossible. For children that are medically fragile, daycare can be dangerous and even life threatening due to the number of germs they are exposed to on a daily basis. Many large facilities are unable to accommodate the specific needs of children. Nannies and private home worker salaries can be financially impractical for many families. Many of us end up at home because we have no one else that can manage the complex needs of our children in a safe place. The only option for many of us is to stay home.

2. Our Children have a lot of Appointments

I have shared with numerous friends that I feel like my life is spent in a car driving to an appointment or a waiting room waiting for the appointment. Our children have multiple doctors, which often means monthly or weekly appointments to various clinics. Children with special needs often have developmental delays. Most of these children require therapy to help them gain skills they would otherwise not learn on their own. For our family, my son has 5 therapy appointments a week to help his gross and fine motor skills, speech and feeding issues. We also have more than a dozen doctors and many of them want to see him multiple times per year. We rarely go a month without a visit to the hospital or the clinic for my son, and most months we are there multiple times. Someone has to be available to take the child to the appointment, talk to the doctors, therapists and learn what is being instructed or taught by the professionals. Most of us realize early it’s hard to balance this schedule and work commitments.

3. Unexpected Emergencies Happen A Lot

Anyone that raises a child that is medically fragile or has special needs knows that emergencies happen a lot. The first few years of my son’s life, we spent a lot of time in the hospital. I missed a lot of work because my son would be in the hospital for weeks at a time, and as soon as he was out he would be unable to go back to regular daycare. As his needs have increased, even more emergencies can happen. Many children that are medically fragile have equipment they rely on to remain alive. Equipment can go faulty or break, and thus our children can require immediate help from medical professionals. My son is G-tube fed, has very poor physical stamina, and numerous illnesses that can send him in to crisis at any given time. When I was working, I used nearly all of my Paid Time Off caring for him during these emergencies.

4. All Employees are expendable

The harsh reality of working in a capitalist society with an economic system built on profit and losses is that every single employee is expendable. I remember the days when my dad would talk about how employers valued their workers and would go above and beyond for them. It seems the world we live in now, which is fast paced and ever changing, is less about worker satisfaction and more about profit and loss. When I was unable to meet the challenges and demands of my job, I was pressured almost immediately to find ways to eliminate the outside distractions in my life that were impeding my performance. Unfortunately, my outside “distraction” was my medically fragile son. There was no way I could manage his needs, his appointments and his well being and the needs of a demanding job. For 3 agonizing years, I tried to balance it all and I was very unsuccessful. I found myself a disposable commodity to them instead of a valued employee after 12 years of dedication on my part. I wish this story was isolated, but I’ve spoken to numerous people with the same story.

5. We spend a lot of time managing and organizing the Care

I hate talking on the phone. I would much rather email or text. Unfortunately, I have to be on the phone to coordinate and organize his day to day life. On a daily basis we have Medical Supplies to order, insurance claims to dispute, insurance authorizations that need approval for medical equipment or medication, therapy and doctor appointments to schedule, and doctors we need to update. If our children are in school, we have to prepare for our IEP meetings, coordinate care with the staff at the school, and ensure that our child’s needs are being properly met at school. Many children with special needs also receive state and county support. As their parents, we are in charge of filling out the mountains of paperwork, getting health records, and jumping through the bureaucratic hoops to get them services.

As you can see it’s more than a full time job caring for a child that is medically fragile or has special needs. We as parents are nurses, doctors, therapists, administrative assistants, and chauffeurs. For most of us in this world, the demands and needs of our child make working impossible and impractical. Next time someone asks me what I do for a living, I’m going to tell them I am the CEO of my son’s care.

 

 

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31 thoughts on “The 5 Reasons it’s Difficult to be Employed and Raise a Child with Special Needs

  1. Margie Bullock?iframe=true&theme_preview=true says:

    This experence is exactly how my husband and I have went down the same road, my daughter is 28 years old, and it has been a struggle. My husband and I made a decision that one of us need to stay home to care for her, he was care giver because I made a bit more money. My job lasted until the plant shut down a year ago, and now I have looking for a job either I am over qualified or they want us to relocate. Our daughter will always come first, she is severally disabled and needs round the clock care. Her father takes care of her, but there is certain things he has not been able to do.

    Liked by 1 person

    1. Michelle Dillon?iframe=true&theme_preview=true says:

      Thank you for this article! I have three special needs children and I do still work. It is very difficult and took me a long time to be able to do. Special needs daycares would be awesome. They have them in England. USA would do so much better in following their model of how they treat parents of special need children. You couldn’t have done a better job hitting the nail on the head in this article. Much appreciated!

      Like

      1. Margaret?iframe=true&theme_preview=true says:

        We actually have exactly the same situation in the UK, which has only worsened over the past 20 years. I am a lone parent, so had to downscale to a low paid job in order to bring up my 3 children, one of whom is severely disabled and I have had no support in caring for her. I have had to fight every inch of the way just to access specialised education and therapies for her. I have never come across specialist day care here. Maybe it’s available for those who can afford to pay in London. The UK government is expert at making the disabled and their carers feel like worthless scroungers, while failing to provide any of the much needed specialist resources that are so badly needed.

        Like

    2. Jessie king?iframe=true&theme_preview=true says:

      My son is special needs as a single mom it has not been easy. But God’s grace and mercy did it. My daughter olivia is a big help as well. I totally understand and pray for all parents of special needs.

      Like

    3. says:

      Gosh that is difficult. I hope you have found something.

      Like

  2. Karen?iframe=true&theme_preview=true says:

    This is wonderful, and so true. My son has a trach and a gtube and is less medically fragile…but is adopted with a lot of behaviors (including self-injurious) and emotional needs and global developmental delays. I worked for the nursing.agency that (poorly, and previously) staffed us and even they weren’t particularly empathetic to my ability issues. There are days we can be on the phone all day long!- Trips to specialists 2 1/2 to 3 hours away plus traffic plus complicated bathroom and meal stops often make it a 12 hour day. Care needs to be skilled and trained so if my nurse called off or was late..or the agency gave her to someone else for the day…there was no one else to fill in. The same goes for a simple early school pick up. I had to leave work. He’s needed surgeries and outpatient therapies…etc, etc, etc. I’ve been SAHM for 6 months now and really want PT job at least but of course it has to fully work around his needs and truth is…his behaviors are so much improved with the consistency of Mom always home and keeping our routine.

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  3. myra?iframe=true&theme_preview=true says:

    Well said and accurate! I was with my job for 8yrs and then a 2nd job before having my last 2kids (4 altogether) my oldest was autistic but I could manage him and a job pretty well my 2nd child came along I was still fine but when my 3rd child came along he required a whole lot more than just therapies he is very medically complexed with 2-4x a month doc app with therapy and he is 100% fed through a tube since day 1 from him being born I could not return to work and then my last and 4th one came I didn’t even know I was pregnant because of being so consumed with getting my child where he could live healthily I still cannot have a job and I am on my own with all 4boys just recently I would love to go back to work the medical insurance denied me for a nurse also you are so right daycare would not keep him they are not trained monthly app and therapy it is all one big thing. Its nice to know that we are all not alone and the constant stares and comments if only those people would walk a day in our shoes I think there would be a lot less judging cruelty this was a great way to express how you and others feel thankyou ❤

    Liked by 1 person

  4. Gilly?iframe=true&theme_preview=true says:

    tomorrow is the first day of not working – by choice – in six years. i was in a very well-paid job before we adopted 3 children. since then i have worked on and off, but left my dream job just on xmas.

    Might i suggest a sixth – and in my opinion – the MOST important reason?

    Self-care.

    Nuff said xxxxx

    Liked by 2 people

    1. says:

      Love number 6!!!

      Like

  5. Gilly?iframe=true&theme_preview=true says:

    yep it was the reason i left my job, along with the other 5 on you list. From now that’s the most important piece of advice i can give to anyone adopting or bringing up children with challenges.

    And if anyone reading needs a further hint, whose oxygen mask do the airlines tell you to put on before helping anyone else? YOURS! How can you help anyone else when you are incapacitated?

    Exactly 🙂 x

    Liked by 1 person

    1. says:

      Love it! Thank you so much for sharing!!!

      Like

  6. Toni?iframe=true&theme_preview=true says:

    I have a 15 yr old son who is now up to 19 surgeries since he’s been born. I have been in and out of employment. I currently work 12hr overnight shifts 3-5 nights a week to help with the finances, take care of my son during the day. I have no nursing care for him, the agency closed our case due to” lack of staffing”!!!.
    My son is wheelchair bound,depends on us for everything!!. People ask me how I do it, I say, ” I just do, he’s my son”!

    Liked by 1 person

  7. says:

    Thank you so much for this well-crafted piece. I had two pieces published on HuffPo over the holidays on this exact same subject. Mine is a Canadian perspective, but eerily similar to what you describe. Thinking about solutions, I wonder if framing this issue as a feminist issue would help (although I do know of many male caregivers too)…and if there’s a way we can join up with the larger caregiving movement – those who look after loved ones in the adult world – whether that’s elderly parents or aging spouses.

    I left my beloved job (at a children’s hospital – how’s that for irony) in November because of their inflexible work environment combined with my (now adolescent) son’s growing needs and lack of child care options for a kid who is 13. It is good to know we are all not alone – let’s keep supporting each other and sharing our stories!

    Liked by 1 person

  8. Debbie?iframe=true&theme_preview=true says:

    my son was abused in school and day hab my son is totally dependant he could not tell me all of the hell he went thru he would come home same diaper on he was not being feed I call the state so many times he would pick up stuff put in his mouth they know that he has to be watched at all times they left him and went back in the building before the driver could let the lift down my son roll off the curb and fell out of his wheelchair into the driveway hit his head on the pavement chip his teeth his eye was almost shut scared up his face they call me and told me what happen and they checked but they did not see a teeth they wash his faced and put him on the bus and sent him home I was pissed I said my son done fell out of his chair and hit his head bleeding and nobody called the ambulance he got home I told that driver he should not brought my son home the ambulance my son have seizures I carried my son to the hospital he was so pitiful he look like some body had beat him up he could see out one of his eyes his mouth was swollen his face was skinned up He did not go back there I put him in another day hab it was worse he almost got killed out there I had to quit my job I can get another job I can not get another son I found out they were putting hand sanitizers on his hands which made him sick it has alcohol in it I keep my own son I love him I can not trust Day Habs with him the he went to were awful so many do not care I am still hurt my baby went thru all that hell he could not tell me what was going on I pray for all of the children, elderly God please protect them my son has scares from school and day hab that will never go away

    Like

    1. says:

      I am so sorry for what he has been through! Your story is all to common. Please keep sharing!

      Like

    2. Lisa Schrank?iframe=true&theme_preview=true says:

      I am so sorry for your child went through. That poor baby! I started crying as I read it. My son was born healthy until his babysitter shook him. As a result he has Cerebral palsy and is legally blind. He has had numerous surgeries. I will never say I can imagine what you and your child went through because no one could imagine the hell you and your child did and still go through.
      The daycare should be shut down.

      Like

  9. April Norrell?iframe=true&theme_preview=true says:

    Great blog! I am a medical transcriptionist and work at home. This is a huge blessing. In my quest to make more money, I discovered network marketing, which was also a huge blessing. I have my own business, working from home, in my own time. The potential to make a decent salary is very high. It just takes a little know how to make it work. It is relatively easy to get started and usually pretty cheap. I am not on here trying to recruit anyone, so no worries there. It is just a solution for those like me that have to make money, but it is not feasible to have a job in the outside world because we have to be available to our special needs children 24/7. Here are a few tips: Find a product that you love and can be passionate about. Sign up with someone that is knowledgeable and passionate about helping their teams grow their business.

    Liked by 1 person

  10. robin black?iframe=true&theme_preview=true says:

    oh my gosh this is so my life from the start 13 yrs ago after my special needs son was born and our roller coaster began , i was in law school , already owned my own home and 2 kids he was the 3rd, we had so much going and then i had to give up my great paying job , and drop out of law school , daycare would not take him so i lost my job but he had to have me, he is a rare case and his disorders grow and get worse he is fragile in many ways i did panic in the first part of our journey but id rather be poor than not have him in our life he is my world but our stories and life journey is so much alike it would be wonderful to connect with you , my son has nf1 , autism, 20 food allergies, a rare chromosome disorder duplication 8p23.3, asthma , diabetes insipidus , foot pronation , 3 tumors and another possibly growing and so much more , i teared up reading this article but connected in happiness im not alone its reassuring others understand

    Like

    1. says:

      Thank you for sharing! We definitely have many similarities in our boys 🙂

      Like

    2. says:

      My son has NF1 as well!

      Like

  11. Angela Stambaugh?iframe=true&theme_preview=true says:

    I have lost several jobs in effort to raise not one but two kids with special needs. My husband is a jerk and couldn’t handle the pressure. Now I am a single mom, working full time, raising 2 wonderful albeit special kids… oh did I mention I am studying for my licensing exam. I make 20.00 too much for government assistance, but not enough to fully support my kids. My ex pays the bare minimum he can get away with in child support and I have no family here locally and really, who has time to make friends or date? Gratefully, I am employed by a man who knows, and understands that my kids have to come first and that there are days when I might have to leave in the middle of something because my kids having a melt down at school, or I have to take them to a doctors appt. I am blessed to have a job and soon a career thanks to him. So I say this to say that it is not impossible. Don’t put limits on yourself, because that is how we teach are special kiddos to put limits on themselves.

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    1. says:

      Thank you for sharing! We do not limit our son. And I don’t limit myself. It is simply harder than I ever imagined. I am glad you have found a boss that is so understanding! That is the truest blessing in all of this.

      Like

  12. Stevie?iframe=true&theme_preview=true says:

    One of the jobs on my resume is Educational Advocate For a Special Needs Child. It’s what I did for 10 years! I list the various duties and responsibilities, just as you would for any other employment; I just don’t mention that it was for MY special needs son.

    Like

  13. Kevin?iframe=true&theme_preview=true says:

    My wife had three children when I met her 20 years ago. The oldest , who was 4 at the time, Briana has a rare genetic disorder. She is a very loving and wonderful child/young adult. Two years later we had our first then 14 months later our second. A wife, a home, 5 kids, 2 dogs and a cat. We had it all, then 4 months ago my wife passed just shy of her 51 st. birthday. I had to take time off of work almost two months to get affairs in order, then back to work part-time but still on a med. leave so I could retain my full time status and pay. Then that leave was up and they told me I would have to come back at full time hours or be reduced to part-time status and pay. Pay me less but I can still come in and do the same job! No Thanks! I have a wonderful family I need to take care of! Every day Briana blows a kiss to the sky and says “mamma Hi” so innocent, makes it all worth while!

    Like

  14. says:

    Im a UK SN mummy and part time nurse. I can assure people that there are no such things as special needs day care in England, at least not local to me anyway. My husband and i both work, i work nightshift and him day shift. And we manage after almost 8 years to work and bring up 2 children, eldest in SN. Its hard work but we do it. And i feel lucky for that.

    Like

  15. says:

    Great post. I appreciate your insight!

    Like

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  17. Kirstie?iframe=true&theme_preview=true says:

    I am a single mom of a medically fragile teenager. He is completely dependent and uses a power wheelchair. I agree with everything you’ve said! Although I do work part time while he is at his dad’s for the weekend it is still tough. My coworkers wonder what I do all week while off work and my weekends that I desperately wish I could use to catch up on housework or sleep are spent waiting tables to cram in as much work on the days I don’t have my him. I also Have 2 daughters that are not medically fragile, 1, 18 years old, lives with her dad ( first husband and also my son’s dad), and my youngest is 6 and her dad, my second husband passed away when she was 2. So I have to constantly worry about my son and make sure my 6 year old daughter is taken care of while I’m at work and it’s a lot. My mom helps out a tremendous amount, picking up my youngest from school and even keeps her one night a week to give me some time with my older 2. It’s hard to be a special needs parent, it’s hard to have more than one child, it’s hard to be a single parent, I am all 3. But still I’m ok. I am lucky to have a support system of family and friends and I have amazing kids. I may be tired, but i am thankful ♡

    Liked by 1 person

  18. says:

    I think it is a unthinkable for parents who are working to support their families so often must quit their livelihood to care for their child that needs extra care, putting the entire family at risk financially and often leads to financial disaster for all concerned. Furthermore, it actually hurts the economy, thus healthcare for all, especially for children with special needs and children who have incurable illnesses is long over due.

    Liked by 1 person

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