This is an old blog that I started in 2006. I keep it because it has a lot of historical data and people still come here. As of September 2016, no new updates will be made here. All new blog posts and writing/publishing related news will be posted over on my new site at www.jenniferhudsontaylor.net.

Thursday, October 20, 2011

Guestpost: Coping with Asperger's by Sarah

Please welcome Guest Blogger, Sarah.

Most people who meet my daughter tell me how impressed they are with her conversation skills and politeness. They find her to be sweet and friendly and she is … BUT if you met her at the ‘wrong’ time you’d think she was one of the worst behaved children you’ve ever seen. It is not naughtiness or lack of discipline that causes this drastic change in her behaviour; it is Asperger’s Syndrome.

Kezia has only just been diagnosed with Asperger's but the symptoms have been there for six years! Why so long before a diagnosis?  Well, it’s only with hind-sight that I realise there were symptoms so long ago. Initial symptoms were attributed to other causes or simply seen as little quirks, not part of a much bigger picture.

What is Asperger's? The very condensed answer is Asperger's is “high-functioning” autism. ‘Aspies’ are usually of above average intelligence, but have extreme difficulty with social skills.  It is much more than that though. For us it’s lots of little differences, in thought and behaviour, that turn everyday things like school, shopping, or meeting friends into very demanding situations.  A change of plans or simply trying to leave the house can cause a temper tantrum as it’s taking Kezia out of her ‘comfort zone’. She has a very literal understanding of language, so I have to be careful how I word instructions, responses or plans. If I say, “I’ll be there in a minute” but take longer or, “I’m coming” and don’t immediately stop what I’m doing then, in her mind, I lied.  She also requires more time to process information and cannot multi-task.

Kezia barely spoke until nearly 3 years old but then, almost immediately, her speech and vocabulary were well above average. She would get upset that she couldn’t write her name or draw as well as the other children at her nursery could. She’d get quite frustrated and negative about her efforts and just give up. I now see this as the initial signs of her motor skills / co-ordination problems and her mind-set; she has a very negative impression of herself and her abilities. These difficulties and others have become more obvious as Kezia has gotten older and progressed through school.

The temper tantrums of the terrible twos didn’t stop and actually began to increase in frequency, length and strength and the nipping and pushing that is common behaviour in pre-schoolers also increased rather than stopping. Her teachers have often said they were concerned about Kezia’s social skills. Academically there are no concerns, she is above average in most areas.

School has been a nightmare over the last six months as Kezia’s behaviour problems have rapidly increased. She started refusing to do lessons if they involved a change of classroom or if it was an activity she felt she couldn’t do. Nearly every morning is a trial just to get her to school and many days she comes out of school breaking her heart because the situation is so difficult for her.

Patience is a virtue but I’m sorry to say I’ve never considered it to be a strong point of mine. However all the professionals involved have praised me for the way I cope; for my patience, understanding and for being “commendably calm”. I’m not saying this to boast, but in recognition and thankfulness for the Lord’s help. I've prayed consistently for patience, wisdom and strength and, in His mercy, He has answered my prayers and continues to do so, helping me through each new day or situation. I don’t just take a day at a time, it’s often more like hour-by-hour or even minute-by-minute as things can change so fast!

I’m on a very steep learning curve and am always trying to be one step ahead of situations in an effort to spot and diffuse problems before they escalate into total meltdown. It is often physically and emotionally draining, but Kezia is my gift from the Lord (Psa 127:3), and I know He’ll help me be all I need to be to support her. I’ve always been shy and self-conscious but, with the Lord’s help, I’ve attended large meetings of professionals and been able to address them all.  I’ve also attended parent group sessions, led by child psychologists, where we not only had to speak; we had to do role play at every session! I never thought I’d do that, but the Lord gave me confidence to do it and do it well, according to the leaders. When I feel I can’t cope, I take courage and renewed hope from the following scriptures:

“My grace is sufficient for thee: for my strength is made perfect in weakness” (2 Cor 12:9)

“I can do all things through Christ which strengtheneth me.” (Phil 4:13)

“Trust in the Lord with all thine heart and lean not unto thine own understanding.”  (Pro 3:5)

“Commit thy way unto the Lord; trust also in him; and he shall bring it to pass.” (Psa 37:5)

About Sarah
Sarah lives in Scotland and is one of my readers who has become a great friend.

6 comments:

Thank you for allowing me to share a little of my story, I hope it may be of help and encouragement to others. Special thanks for your lovely introduction and for counting me as a friend. God bless you and your family, Jennifer.

Sarah, thank YOU for sharing. How old is Kezia? Praying for both of you. What a struggle - but she WILL grow you, as God will.

Hi Joanne, my daughter is 9. Thank you for your prayers and encouragement and for sharing your story earlier in the month. There was a lot that you wrote that I could identify with too.

Sarah, my heart goes out to you. My son has Asperger's, too. He is 19 now and in his first quarter of college. He has two cousins who also struggle with Asperger's. Among the three of them, my son has the least trouble with behavior but the most trouble with the obsessions aspect of Asperger's. However, we saw a marked improvement in my son's meltdowns as he grew older. That was so encouraging to me! Some things will remain challenges to him, but he is growing into a mature, capable adult. (Having said that, I had a heated discussion with him two days ago about waiting to do a homework report until just before bed--he has always hated to write reports! Afterward, I found myself thinking: "this is the same problem he had when he was in junior high." And that old familiar worry crept in that he would not be able to accomplish the goals of college.)But for the most part, from trusting him to get on a shuttle bus, to trusting him to learn to drive, to trusting him to remember assignments, he has done much better than I feared he would do.

Half the battle is knowing what we're facing, and you're doing a wonderful job with that, Sarah. You're facing each challenge and coping as well as possible. You sound like a very capable and loving mom.

Praying for your Kezia as she moves through her school years, and for you, too. We're in it together and we can make it, and our children can, too, with the Lord's help! Thank you so much for sharing your story.

Thank you for sharing your story. I worked full time as a caregiver for a family whose child was later diagnosed with Asperger's. I was the one who noticed a difference in development than with his twin. It is heartbreaking enough to know your child needs more, but to have a caregiver be the one to tell you is a difficult place to be in.Once diagnosed we all worked together to make his environment and education work best for him. Unfortunately I suffered some pregnancy complications and had to leave my post, which disrupted things. I have long kept in touch with the family over the years and am pleased to hear of his progress in life's events.I am particularly happy to hear he is attending a university and plugging away at life at his own pace.I was recently able to encourage another friend whose son was recently diagnosed, she like you has always known something was different and it was so very hard for her to get that diagnosis, because he is so high functioning in all other areas than social. I encorage you to have hope for your daughter's future at her pace and never lose site of the fact that you are a child of God and He will never leave you nor forsake you if you give your heart to Him. You are never alone

Dee, I read your blog several days ago and wanted to comment but I was using my phone and unable to. It was a great encouragement to read your story and your comment to me here. I'm sorry for the tough days you still have but I'm glad that the positives far outweigh the difficult days, as they do for me also. Thank you for sharing, for your prayers and for your kind compliments.

Anonymous, Thank you also for your encouragement and advice. It's good to hear of another boy/young adult managing so well. I gave my heart to the Lord when I was only 7 and I know it is His strength, and not my own, that gets me through each new trial.

God bless you both.