The other side of things.....

  

We celebrated her fourth birthday in October; the year hasn’t been without its challenges.

You see, my daughter at four has speech delay, she also has scoliosis.

The usual challenges of parenting are compounded for parents and primary caregivers of children with special needs. Some of the many challenges include learning about the disability; researching, locating and accessing effective treatments and resources; Coping with the emotional and physical demands of caring for an individual with a disability; Getting to the innumerable appointments with medical providers, therapists, advocates,  and school personnel; Advocating for appropriate school interventions, accommodations, and/or placements; Paying for the many treatments and interventions not covered by health insurance or the school system

There is also Stress that comes with this; the burden of stress is big for parents of those with special needs.  Finances are often a source of stress. As a parent of a child with special needs; you often have to sacrifice your career to attend to your child’s needs with a resulting loss of income for the family, not to mention time away from work which you will have to make up for because you also want to show that you can actually deliver to the best of your capacity despite what is going on in your personal life, and you need that recognition.

As a single parent; I do not have the emotional or financial support that comes with an additional partner /spouse to help ease this load.

I hugely depend on myself for almost everything, my own needs and the needs of my child.

I have to think about paying for her child care, protecting her emotional wellbeing to ensure that she can be emotionally  intelligent as she is growing and to try as much as I can to play the role of a father as well as mother to her. This means I have to put aside my own needs first because her needs matter more, she’s small and vulnerable and I tell myself am all she has.

I have often gone broke and been unable to save properly because I’d find myself sourcing for her care including paying cash for her brace materials to people who may know someone who knows someone with that material and they all need a cut in this process.

You are at the mercy of the system.

I have had to ask for time off from work often and travel, that meant expenses for fuel and lodging as well as food as I searched for healthcare that was not found in my location.

The emotional impact is enormous, you fear and worry about a lot of things.

Your child’s pain and suffering

Your child’s future

The question of whether you are doing enough or doing the right things to help your child

You tend to have guilt over the limits of your ability to protect the child;  

The loss of attention toward other children (if you have other children), your spouse and aging parent/s, my mother right now, also needs her own medical care.

Your jealousy and resentment of those with “normal” children.

I have often been in situations where I felt “self-pressure” when am around colleagues or friends with children that may even be younger than my daughter’s age, talking animatedly about this and that and the pride in those children’s parent’s faces as they beamed on their children’s “intelligence”

Because my daughter has scoliosis and has to wear her brace for at least 20 hrs. a day, she cannot wear smaller clothes ,I always have to get a size bigger so she can wear the clothing over the brace, however it is not always like that, because sometimes the weather can be really hot and extra clothing on a hard brace means extra weight and heat. So I’d just let her wear a vest and put the brace over, no cute dresses or anything like that because we have to ensure that she is consistent with the brace if we are to see good results.

As a parent for a child with special needs, you feel isolated because you miss out on many family-oriented activities because your child’s disability prevents her/him from successfully participating; or you, because you’d be away at a hospital appointment or something; you usually encounter criticism and judgment of your parenting from others who don’t understand your child’s disability; you feel like an outsider around parents of typically developing children.

I remember the first time I learned about my daughter’s scoliosis and I took her for a physical examination and the doctor there jotted down some notes, looked up to me and said, “how could you not notice this?”

Another time I was unwell and I went for a checkup, as the doctor was asking me about my history and how many children I had, when I mentioned one and he looked at my age on the chart, he murmured that I “started having children late”

I sat there in silence because how could I say to this insensitive doctor that I have had a miscarriage before my current daughter and that I had not been lucky when it comes to relationships?

All these factors play a role in when and how you have children. There’s no woman that wakes up to decide to be a single parent when they had wanted all along to have an environment where both parents where available.

How can I explain to this insensitive doctor that my mental health mattered more than sticking around in a toxic relationship just “to have children early”?

So I sat there in silence. You can’t explain anything to someone who sees nothing wrong in what they do or say.

I have learnt this overtime, that sometimes the best you can do is stay silent even when it hurts you.

You also suffer from a lot of grief.  

You grieve over the loss of hopes and dreams you had for your child; not having the parenting experience you had imagined and recurrent reminders of what your child misses out on leading you into chronic sorrow.

Fighting for services, feeling unskilled, experiencing stigma and prejudice as I had shared in my examples and also coming to terms with life being different from how we expected can all take their toll.

You can feel a range of emotions, often all in one day, dependent on what is happening in your life, an ‘emotional rollercoaster’, which I can sum up as “your greatest joy and also your greatest heartache”

You are our child’s greatest advocate but this can have an impact on your wellbeing.

 No one can fight forever without there being a knock on effect. 

Moving from worrier to warrior is not an easy journey and neither position is without its challenges.

Parents of children with special needs are often exhausted and frequently become depressed.  

I rarely share my thoughts and feelings about this with even with some of my friends as I loath the thought of them going about “broadcasting” about what I was/am going through, especially to people that do not support me or that have hurt me.

I do not remember the last time I ever felt rested, I often wake up feeling tired, even when I may have had an early night still wake up feeling tired; I often work on zombie pilot mode and get my work done, have conversations at work with people, associates and colleagues; relatives and friends.

Once in a while I treat myself; I do my nails, do my hair, I try to look good always, because I do not want to appear as I often feel, and it does help to lift the mood sometimes; and sometimes I meet a guy I like and it almost feels like I have my shit together; but when I get home and close the door away from the world, I feel the weight of exhaustion and depression accompanied by feelings of helplessness.

You will find that parents who have children with special needs will have their reserves of time and resources for self-care are even more depleted than those of parents of typical children; and yet their need for refueling is also greater.  

However; besides these challenges there is also the positive impact that comes with raising a child with special needs: you grow as a person; put life into perspective and appreciate what is really important; greater expertise, knowledge & awareness; you make new friends who truly understood you; you become more determined, you fight & find strength as well as enjoyment and pride in your child. 

You learn to hope and have a sense of purpose.

You are not alone

I hope that by raising awareness and writing about this, we can realize we are not alone. 

As my daughter is growing up, despite the numerous professionals I have met so far, no one has ever asked how I am doing or acknowledged that the situation, especially the behaviors that I found challenging, could be difficult for me and our wider family.  It is assumed that we ‘just get on with it’ or if it is clear that we need support, there often isn’t any funding or anyone who can provide that support outside of friends or family.

Also; any suggestion that we may need help can feel like a personal failure; I mean surely we can manage to exist on two hours sleep a night, hold down a full-time job, support a home, manage challenging situations or behavior, fight for services and education and have no mental scars!

Knowing and feeling are two very different things. I knew I wasn’t a failure, but I couldn’t shift the feeling that I was; that in some way I was weak or not able to cope whereas others were.  Whatever I tried never felt enough.

I realize now that is not the case.  

We all have our struggles, our times of despair or ‘failures’.  It is ok, we are ordinary human beings in an extraordinary situation for which nothing can really prepare us.    

And sometimes hearing from others in a similar situation can be helpful and even empowering.

I am still learning on how best to cope with everything but some of the things that have helped are:

Being realistic: I always try to cope with everything alone. Maybe you do that too; sometimes I stop people from helping in case they don’t help in the way I want them to. I often do this and it isn’t helpful, it can actually build resentment and create further isolation. Am learning to slowly to allow others to help me, it cannot always be perfect, nothing is, but you need the help and when it presents itself, all things considered that it’s ok, allow it.

Self-Care: Taking care of yourself is part of taking care of your kids, and a happy mom manages better; this may not be what you think it is. It isn’t necessarily a trip to the nail salon or a spa day (although those are great too), but self-care is also just even having 10 minutes to yourself, locking yourself in the bathroom; with your phone or a book. Sitting down with a coffee. Asking a neighbor to come in and sit with your children for 15 minutes. Joining a support group, whether in person or online. Exploring what's available in your local area.

Becoming aware of unhelpful feelings: We all experience them, for example, guilt or anger. Use them instead to drive you to act on why you are feeling that way. Guilt can really trap your mind and make you believe what you are feeling is truth, so having awareness of it can help deal with it when you need to.

Remember that feelings pass: They come but they also go again – how you feel now is very different to how you felt last year, last month or last week and will be different again next week, next month, next year.

If adopting a strategy like mindfulness remember that you can do as little or as much as you need to and it doesn’t have to be the whole 45 minutes – 10 minutes ‘being in the moment’ while you go for a walk will help calm a frantic mind.

Eating well: Eat and drink healthy and lots of water; or juice, it helps keep you hydrated. There have been times I would go all day without drinking water because I’d be busy with work, it used to leave me feeling even more exhausted at the end of the day. Nowadays I ensure I move around with my bottle of water and sip all day as I go about my business.

Trust your parenting: Know that you know your child and their needs and be confident knowing you don’t have to justify them to anyone. You may have to evidence their difficulties if you're seeking help and support, but that is very different to justifying their behaviors to family or peers.

Quieting the inner critic: I am the worst at this and i do this a lot to myself, but above all don’t be your own worst critic. If negative thoughts automatically spring to mind, or you have a tendency to be self-critical, remind yourself how disempowering this is, not just to you, but to everyone you're trying to support.

Being kind to myself: Remind yourself that when you've had a difficult day or needed a daytime nap that it is OK to do so – it was what your body needed during a difficult day. Tomorrow will be different. Today I ate unhealthily, but that is OK, tomorrow I will try to eat more healthily. I became frustrated due to outside factors, but that’s OK, tomorrow I will try a different approach. Adopting self-tolerance and understanding is one of the best strategies of all.