Tag Archives: autistic spectrum

My child is different, now what?

It has been more than a year since my last post, which is way too long but it has been an extremely busy year. The year has been swept away with life in general and constantly being on top of my son’s needs. There have been so many new experiences and insights during the year, which I hope to share in time.

I have also embarked on a new career. I am now a supportive counsellor with a special interest in parents on a journey of specialised needs. I have been doing short informational talks on various topics around special needs. These talks involve a lot of research and time. They are proving to be very beneficial, and I think they would make interesting articles for my blog. Therefore in the interests of time and sharing – some of the articles I post will in fact be based on previous talks that I have given.

I look forward to continuing on this journey with everyone.

My child is different, now what?

Receiving a formal diagnosis or having friends, family or a school teacher tell parents that their child is different or even “there is something wrong, with your child” – the message can come in so many forms, is at some stage met with mixed emotions by all parents. The message may be surprising, shocking, devastating, even relieving. But it probably also comes with immense confusion as to now what?

• What do we do?
• Where do we go?
• Who can help us?
• Do we have to change schools?
• What about medication?
• What does our child have?
• What does that mean?
• What is the prognosis?
• How will we manage financially?

Sound familiar. The list is endless. The list is overwhelming.

The journey of specialized education needs is easier for some than others. This depends on the case and each parents own way of internalizing and dealing with the experience. The road is not an easy one, but it is also not all bad. It is a different journey to the one any parent envisages for themself, their family, their child. It is filled with more bumps, often bigger bumps and potholes – some of these bumps and potholes simply creep up, causing stress and even pain or anguish. The repeated crashing into these bumps and potholes can wear one down, but some much-needed TLC, can give one the strength to continue to navigate. As one becomes more aware of the terrain the journey becomes so much easier.

Through reading and interaction with others; here are some tips for making the path a little easier:

1. The most important – TLC – look after yourself and your marriage.

2. Create a good support system; this may not always be family.

3. Someone to talk to honestly about your child, and your feelings about your child.

4. Remember you are your child’s parent. Do not become their therapist or teacher, try not let their needs be all consuming.

5. A good supportive school system makes the world of difference.

6. A doctor you can trust.

7. Not exposing yourself to too many conflicting opinions and too much information. The Internet can be a blessed source of information but also a curse.

8. Take joy in the small wins. This journey will be made up of many of them. A parent who has a child with ADD – knows what a win it is when their child is able to sit long enough to concentrate on homework without a fight. A parent with a child with autism knows how liberating it is when their child is finally toilet trained or when they stop running away from you in a public place. A parent with an anxious child knows the joy of when their child is able to walk into school all by themselves for the first time. A parent of a child with dyslexia knows the pride they feel when their child reads their first sentence without a mistake. Never take these small wins for granted – they are the steps to bigger successes.

9. Lastly trust your gut.. Remember when your baby cried in the beginning, and you were never sure what they wanted. Soon however you knew what every cry meant, what your baby needed and wanted, when no one else did. With special needs some parents lose this instinct temporarily. Some parents may feel, how did I not know. Some parents may feel it very difficult to relate to their child, because they are so different. But parents are also the best champions for their children; no one will fight for your children like you will. The fact that you are trawling the Internet looking for help and support is already an indication of this.

Holding Back

I frequently find myself wondering how much emotion is appropriate to show ones children. My kids have seen me very upset by another person once and crying from being very ill once. Each child had a very different reaction and handled the situation uniquely. My ASD son on seeing me being upset was rearing and ready to go and hurt the “ugly man” who made me so sad that we had to hold him back. My other son was calm yet a bit concerned and interested in this newfound side to his mom and my daughter was a bit confused. On the incident of me being very ill my ASD son was very anxious and crying, he tried to help me, called for help and screamed when he had to leave me. My other two children comforted me in their own unique ways.

I think it is an important lesson in life for our children to see human emotion especially from their parents. It can be used as a guiding force in how to handle various emotions. Although I firmly believe in this principle my kids have not seen all my ranges of emotion, specifically sadness, anxiety and fear. I keep these very much in check, as I also believe as a parent I need to protect my children, they do not need to be exposed to too much too early. So what is the elusive balance, in teaching our kids emotion and how to deal with it through our own experiences, yet protecting them from our own hurt, fears and anxieties?

I grew up in a family where my father was a typical man and very emotionally strong. My mother on the other hand is a much more emotional being and perhaps shared too much. I have always prided myself in being able to feel emotions but not overtly showing them. In truth I have realised over the last few years that this is a farce. By not showing your emotions or having an outlet, I think I have become quiet hard and one of my challenges of having an ASD child has been to feel more emotion and realising I will not fall apart.

Naturally my kids have seen me cross or angry, especially as this is often directed at something they may or may not have done. I do not like to shout, but we all do it as parents and of course I have days when I do more than my fair share. My kids always get ample warning that they are pushing me and that I am getting frustrated. How my two neuro-typical kids will handle emotions of anger I am not yet sure. They are little and still have temper tantrums or fits of tears to vent their emotions. My ASD son who already has frustration tolerance and anger issues, shouts at us and gets extremely angry and moody. I do get concerned that I, in some way, may reinforce his behaviour. Working on his anger and mine is something I address all the time.

My ASD son started “big school” this week. Who can explain why for mothers the first day of “big school” and school uniforms tug at our heartstrings, which are apparently directly joined to our tear-ducts. I found myself in a familiar position with him. I wanted to be emotional but felt I had to hold back. I did not think him seeing me with tears in my eyes would bode well for his anxiety levels. My plan was therefore to drop him off and afterwards feel the emotion. The moment I walked out of the school there was a silent sob from me, but the moment was lost and I found myself feeling sad that I lost the ability to feel the emotions I knew were inside me. I saw other moms with tears streaming down their faces and hugging one another. I felt very excluded from this experience. Holding my emotions so close and tight affects my ability to feel. I want to feel them but I have a valid reason to keep my emotions close to my heart. But by doing so, I become closed off and hardened; a very common occurrence in special needs’ moms.

Excitement is another emotion my husband and I keep close to our hearts; we were so excited about his first day of school as was his younger brother and his granny and nannies. Out pop the cameras, I would have loved to behave like the paparazzi and shoot 10’s of photos for this occasion, however 2 to 3 was the maximum amount we could get. Making a big deal of this day would set up expectations he could not handle. As does making a big fuss about the fact that he has just learnt to swim or read his first word. There seems to be an immense anxiety on his behalf about us having immense excitement in his abilities. It feels like he senses our expectations and this is too much for him.

Anxieties and fear are of course other emotions that have to be controlled. My son can feel my anxiety in a situation and it just feeds his anxiety. I think it is beneficial for my ASD son that I hold myself back in most contexts. I think it enables him to make more sense of his world and cope better. He does not necessarily understand certain emotions yet, so they may be confusing to him and can also be too much for him to tolerate and work through. Luckily for me when it comes to cuddles and love, he is really an affectionate child who is very demonstrative. I know many parents with ASD children who have this as an added battle; their children do not tolerate affection. This can be demoralising and soul destroying for some parents but they become accustomed to it and learn not to take it personally. Yet for other parents it is always an immense aspect of pain. For most moms, hugs and kisses are supposed to heal and make it better, but these too, can be another set of tools ripped from an ASD parent’s armada.

For my other two kids I feel I am doing them an injustice. Even though I am a very loving mom, they do not get to see all sides of me and learn human emotion and how to deal with feelings from me, even in a small and yet still protected way. I can talk about them being sad, excited, powerless and anxious but never really show them this emotion in me, or give them lessons in how I deal with these emotions. They are very interested in the fact that I may sometimes cry; why mommy, when mommy; even how mommy, do you have tears, do you make a loud noise or a soft noise?
I always used to have an irrational fear that if I truly felt my emotions I would become depressed or fall apart. This is not an uncommon fear. Many of us do not like the thought of dealing with our emotional stuff; we are concerned if we go there we may not be able to handle the emotions. I have worked hard in the last 3 years to come into touch with my emotions. This has been beneficial, as I love being aware of what I feel. I just wish I had the ability or luxury to show these emotions more, not always having to be so held together. I think instinct plays a role in holding me back – even if it does feel a bit unnatural. But, I have worked so hard to feel more and I do wonder what would happen if I was a more feeling and emotionally open parent? What are the gains and losses to each approach?