Marti Leimbach
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Better Together
 

This year, the juniors at my son’s primary school performed Macbeth, an ambitious undertaking for primary school children. Nicholas, my son, had a very small part. He did have a line – okay, a word – but mostly he was off stage among the invisible choir, well out of the way of the action, which was probably just as well. On the night of the performance he complained constantly about how he did not want to be in the play. He didn’t like the costume, didn’t know his line (word) and thought the whole thing was boring. Couldn’t he stay home and watch Basil Brush reruns instead?

Meanwhile, on the same night, in a different part of Berkshire, my husband was attending our daughter’s choral concert. Our daughter, Imogen, is one of those extraordinary children who gets put in top sets not because she is such a genius but because she works hard, respects her teachers, and continually strives to do better -- just because she thinks that is the right thing to do. If you take her to a movie, she thanks you three times before you’ve even picked up the tickets. If you take her bowling, she offers to let her brother have an extra go, throws the game so he wins, or waits patiently through his temper tantrum if he doesn’t. She is so good -- too good -- and sometimes we worry about her for that reason!

When we go places with Imogen, people compliment us. They remark about how clever she is, or how cheerful, how interesting or nice. It is wonderful to go around with her because you can feel, however erroneously, that her charm is a reflection on you, on your superior parenting skills or combined genes. That is just one reason why a child like Nicholas is such an essential member of our family. It isn’t just that we love him (we adore him) but he teaches us something about ourselves and about people around us. With Nicholas, you will rarely get a compliment. “He has such nice blond hair” is about the sum and total of what we might hear on a good day. What usually happens is people try to ignore him as he fastens his attention on something they have that he wants. Nicholas has an obsession with guitars, so a busker may be accosted with questions about the particular model of guitar he is playing, then urged to play a song from Deep Purple rather than the soulful folk tune he’d been strumming before Nicholas appeared.

I am incredibly proud of both my children – and I think they illustrate a larger point, which is that two completely different types of children – one a high-achiever and scholarship winner, the other a “special needs” child hanging on for dear life at a state school – can exist side-by-side much of their day, peacefully and happily. For the truth is that they are best when they are together. As different as they are, they are siblings who play together and have their secrets from Mum and Dad, who tell each other jokes and always ask when the other one is coming home. There is no finer argument for “inclusion” of autistic children in mainstream schools than my daughter and son sitting together reading books at bedtime (her book ,When Hitler Stole Pink Rabbit; his book, Thomas The Tank Engine: The Complete Collection), or seeing Imogen coax her brother onto the ice at a skating rink, holding him up as they move painstakingly together.

There are times when we do things apart – Imogen can only spend so much time at train museums and guitar shops, while Nicholas cannot be expected to survive a day of high speed rides at Thorpe Park. But having such different children has not caused us to feel divided as a family, but rather a little more humble, a little more respectful of differences in others, and perhaps a little more tolerant than we used to be.
 
Friday, June 30, 2006 | 10:39:57
Comment by Carri Cassidy
 
Here I am living in CA with Kaitlyn (my "Imogen") and Kirsty (my "Nicholas"). I completely understand your assessment of your family as more humble, more respectful of differences in others, and more tolerant than you used to be. Kirsty has caused these same affects (effects? Sorry not an English major.)in our family. Before Kirsty was diagnosed with developmental delays, I was so proud of Kaitlyn (and myself I embarrassingly admit) for the wrong reasons. I thought my husband and I had produced this remarkably articulate, intelligent, lovely child as a result of our superior genes or something ridiculous like that. I used to brag about her (more embarrassment on my part!) wondrous accomplishments. Then my second child got to be nearly a year old and wasn't crawling, babbling, etc. and as time went by she was diagnosed with developmental delay, but no reason for this happening has been found. Her wonderful pediatrician assured me right away to not blame myself (as he wisely knew I was already doing) and to realize that God wired some kids "differently." I have since changed so dramatically in the way I view the world. I have always realized that, despite her differences (or probably because of them), Kirsty has special gifts to offer to the world. She is so happy and friendly that she truly brightens the lives of everyone she knows and meets. It warms my heart and brings tears to my eyes to read your comments of the positive ways Nicholas has changed your lives. I feel exactly the same way about Kirsty.
 
Saturday, July 01, 2006 | 05:13:22
Comment by Marti
 
Hi Carri, You know, I wanted to add a story to your own (marvellous!) one about a little girl in our village who was similarly delayed. She didn''t walk until she was 2 years old, had seriously slow speech, used to just sit and do very little and slept a lot. In school she was always way behind and she preferred playing with the small children. In fact, when she was 8 years old she was friends with my 5 year old daughter and my 5-year old seemed academically a little bit ahead of her. By then she was talking and looked pretty normal in every way, but she was still quite delayed and didn''t seem to have the spark and ability of her peers. But guess what? That child is now a teenager and speaks 2 languages and is doing fantastically well. She is delightful and a whole lot smarter than anyone would have ever known. All the physical delays melted away pretty early on (she was pretty good on that score by the time she was 8-9 years old). I think that children who are delayed achieve amazing things and this little girl was always so lovely anyway. She used to sleep over at our house a lot so I knew her well. She was wonderful. She lives in France now. Apparently, she didn''t speak a word of french for 6 months after they arrived (even though she was going to french school) and then, bang, started speaking in short sentences. I really loved this little girl. She brought a huge amount of love and contentment to everyone around her. Sadly, I don''t see her now that they are ln France!
 
Saturday, July 01, 2006 | 10:08:11
Comment by Carri Cassidy
 
Thank you for sharing this success story with me. As you realize, I collect such stories for my well-being. This little girl sounds very similar to Kirsty, who is now 7. The only difference is that Kirsty has always been very active and a light sleeper. In fact she used to wake every night and still sometimes joins us in the wee hours of the morning, although she almost always goes right back to sleep now. It's most interesting for me to hear of children like the little girl you mention because my experience with the students I have met through Kirsty's schools are that there are none like her. All of the students I have met who have speech and academic delays that are as pronounced as Kirsty's have obvious physical symptoms (i.e. Down's or other genetic conditions.) Kirsty is "normal" in physical appearance and features and the experts feel there is no cause for genetic testing. Her MRI shows no abnormalities, so the delays are centered around the wiring, or connections in the brain. (I don't really understand how this works...) Anyhow, I'm wondering if the little girl you mentioned way a premature baby. I ask because Kirsty's neurologist has proposed the theory that her brain was "not as developed as it should have been" when she was born, similar to that of a preemie. She used to be obviously ataxic (shaky when she walked and a tremor in her hand when she did things like bring a spoon to her mouth), but has made great success with interventions only (no meds to stop the ataxia), so the theory is that her brain has developed and she has "outgrown" some of her symptoms. She is still a great mystery to us, but things happen even in normal pregnancies. So I try to focus on how to help her achieve, but a part of me is still trying to piece it together. The difficult part about having no diagnosis is having no "starting point" to go from. On the other hand, there is no diagnosis limiting her either. The bad and the good of it... :)
 
Sunday, July 02, 2006 | 04:23:09
Comment by Marti
 
Hi Carri! I don''t know if she was premature or not, I''m afraid. I do remember that she had a problem with her hands, nothing that I would notice, but her mother told me something about her finger pads not having the right amount of feeling in them. There may have been other small deficits, too, but I''m not sure what they were and they were not all that obvious!
 
Sunday, July 02, 2006 | 16:49:51
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