7 Things Every Special Needs Parent Should Know TODAY

1. Play time with YOU outside of therapy is just as important 

Parents understand the importance of therapy, and spend lots of time and resources to make sure their kids get professional help. However, I find that during the course of this process, the power of playing with you is often overlooked.

My tip I always give to parents is to spend at least as many hours playing with your child as they spend in therapy. This might sound like a lot, but it is through play, in which you not only help your kid practice what they learn in therapy and build skills, but just as importantly, you teach your child the vital things in life that therapy can’t. You teach them how to share, love, negotiate, compromise and how to win/ lose. They see how to be helped and also learn how to help others from you. 

While therapy is a way to help kids become more comfortable and adapt to their areas of challenges, these areas should not define them. When you play with them, it helps them intrinsically see their unlimited potential and all the ways in which they can be great kids. It sends a message that they are treasured, valued, loved and we are not always trying to ‘fix’ with therapy.

There has been recent articles about how our children in Hong Kong are not getting enough playtime:

2. Parenting stress is normal, we are all human

Research finds that special needs parents typically report higher levels of parental stress than parents of typically developing children. With the added complexities and emotions which come with raising a special needs child, distress understandably can be and is often more severe. 

After diagnosis, you may find yourself having feelings of anger, guilt, shame, despair and even self pity. You try to make sense of the situation and torturing questions start to flood your mind: What did I do wrong? Why did it happen to me? What is wrong with me? For Some parents, it’s not their first child but then they have to deal with taking everything they thought they knew about parenting and throwing it out the window.  

Considering all this, most distressed parents will tend to suffer guilt and attempt to make an adjustment to reduce distress, but sometimes this can come at the cost of distorting ourselves and our relationships with the rest of the family. 

The reality is we all want to fix and to “right the wrong” by actively doing something. We might dedicate our whole life to caring for the child but along the way we may grow apart from our spouse or may end up pushing others away, projecting our guilt onto something else and not taking care of ourselves. This is the reality we might all face, but ideally we want these relationships to remain emotionally and socially healthy with extra skilled help needed to help the child overcome daily challenges. This leads on to our next point…

3. Remember to be kind to yourself 

We all struggle and make mistakes at times. It can be so hard mentally dealing with all the parent guilt, blame, our own feelings of frustration or anger when our child is not listening, having a meltdown and when others just simply don’t understand what you go through on a daily basis. All this can be so emotionally draining and exhausting. 

When we are in this state our brains think in black and white and it's hard to see the positives. This can make it even harder to make the right choices and actions. So be gentle and kind to yourself. It's okay to ask for help from your support network so that you can take a break. Remember you might have never had to make these decisions ever in your life before and that can be tough in itself, sometimes there is no right and wrong and we have to just go with what's available or sustainable for the family whether that be the right school, therapy choices, parenting responses etc. Think about it this way, you must have heard on the planes you must put your own oxygen mask on before assisting your child, parent, sibling, partner. You must take care of yourself because if you run out of oxygen, you can’t help anyone else.

4. Trust your gut instinct 

At the end of the day. You know your child best. Therapists, doctors, teachers do not spend 24 hours a day with your child like you do. You are the expert of your child and if something doesn't look right, for example how your child is responding to the assessments or treatments, don’t be afraid to follow your gut or ask further questions. If you feel like the therapist didn’t quite understand or you have some concerns and worries that they may not be the right fit to help your child, then it’s worthwhile to express this concern and it’s a good idea to get a second opinion. I would also comment that you shouldn’t be afraid to shop around for a therapist. Although there is a balance to it, as constantly changing therapists can be disruptive to a child’s progress. 

Observe the sessions and see how your therapist connects with your child (ask yourself - do you feel comfortable and understood?). You can even ask for the credentials and certifications of the therapist in different areas to make sure that the therapist has experience in the treatment methods you believe is beneficial for your child. Ask about the therapy goals and timeframe to review the goals. If you are seeing plateaus, try to get more information on how you can help or ask if there is something the therapist sees differently, to help you understand your child’s progress better. To find out more about whether you have the right OT for you, see the bottom of this page to receive our Complete Guide to Choosing the Right OT.

5. Make time with loved ones 

Unfortunately, the rate of separation and divorce is much higher because of the added pressures of having a kid with special needs. It depends on your child’s needs, but more often than not due to extra financial pressures, one parent has to stay home to help their child. In this situation, I wanted to emphasise that the parent at home will get to know the child more and at the same time feel utterly exhausted. The other parent may also suffer if they aren’t able to actively help and feel disconnected from the child. Everyone also copes and approaches it differently. There might be fights along the way on what's best for your child. So make time for your relationship away from your children. If there are siblings, remember to make time for them. It’s okay to ask for help and organise a support worker or respite carer for a few hours if possible.

6. Videos can be very useful 

This is obviously a personal choice and decision but taking videos is a great way to show the therapist or doctor what is happening at home. These videos could cover for example, during feeding or what is happening in the playground. The therapist may not know the extent of what is going on but a video or picture is worth a thousand words. For younger children it is also a great way for you as a parent to track progress. You can ask permission from the therapist if you can take videos or if they can take videos and send to you. You are able to capture more information about your child’s social emotional development, their sensory differences with regulation and what their attention looks like over time. Especially for early intervention, you will capture in videos, your child’s increased complexity of play skills and the gleam in the eyes during connection with a play partner, which is hard to capture on paper when setting goals. 

7. You are not alone on this journey 

You may not find another parent in the exact same situation but many may have similar challenges and experiences. You can find those people in different ways. You could contact your local autism organisation and they might have resources of parent support groups around your local area (list of groups for Hong Kong coming soon!). For parents who may not speak english, you can ask for parents with similar cultural backgrounds or common languages. You can make friends this way and ask questions or support each other. Another option is Facebook groups online. There are numerous support groups, some are even more specific for different conditions or diagnosis. In Hong Kong, we have Special Needs Network Hong Kong. Parents will post recommendations for specialists they have had good experiences with and helpful strategies or questions. If your child is going through the Occupational Therapy process we also have our own parent support group https://www.facebook.com/groups/OTParentSupportGroup where we answer your questions and share helpful resources.

Emily Nguyen is a Paediatric Occupational Therapist and caregiver to her little brother who has Autism Spectrum Disorder. She writes from the perspective of her experience as a therapist as well as a caregiver to a special needs family member. The blog posts are intended to inspire and educate but are in no way intended to offer medical or mental health advice. Please see disclaimer for details.