When, as a transracial adoptive family, we move into a new community, or when our children move to a new school, we are faced with the challenge of explaining how we are connected as a family. Let’s face it, this is a constant part of the experience of adopting across racial lines: every place we go together, we face direct or unspoken questions that confront  the legitimacy of our family. It’s understandable: we don’t look alike, people are naturally curious. But that doesn’t change the trepidation that these transitions bring up for all of us.

James was starting fourth grade at a new school. As usual, it went smoothly for the first several days, because people hadn’t matched us up yet. As long as only one of us picked up James, they figured his other parent must be African American. But eventually everyone realized that we didn’t match, and so the questions began.

It was my husband Ted’s day for pick-up. The kids waited for their parents by the big tree in front of the school. Since we lived about five miles away, Ted was driving. He had parked at the other end of the block. James was waiting, backpack hanging off his shoulder, eager for a snack and ready to go home after a long day at school.

As they walked to the car, James walked next to the chain-link fence that surrounded the block-long  schoolyard, with Ted next to him on the street side of the sidewalk. Inside the fence was a little boy who, as it turns out, was in James’ class. Black like James, Dexter worked to get James’ attention.

“Hey, James,” Dexter called out, “James, is that your dad?” James tried to ignore him at first, but Dexter was persistent and he wasn’t going to let up.

“James, James, is that your dad?”

James responded with a distraction. “Hey Dexter, look, the guys are playing basketball, they want you to come over.”

Dexter looked over and contemplated the game, but there was something here he needed to know.  “Yeah, yeah, but James, is that your dad?”

Taking James’ backpack, relieving him of one burden, Ted remained silent as they walked the trek to the other end of the block.

“Hey, Dexter, what did Ms. Johnson say we have to do for math? I didn’t understand that part about the apples and pears, did you?”

James, walking with his head down, looked like he wanted to sink into the sidewalk itself. Ted remained silent, allowing our son handle his friend without interference.

Dexter was nothing if not persistent. Everything James had thrown his way had not distracted him from his purpose. Eventually even James seemed to accept the futility of fighting off this unwanted curiosity.

As if in front of a firing squad, James turned and spat out his response: “No, he isn’t my dad!”

Time stopped. The instant was transformed into something bigger and more potent than any of the three had planned. It was one of those split seconds of parenting that we all fear, where no amount of preparation can possibly predict the feelings and tension of the moment of truth.

Ted and James walked silently to the car and got in. Seatbelts on, snack delivered. Ted turned to James and said: “James, I just want you to know that I know that you love me.”

Our baby collapsed in the arms of his father and sobbed, wracked with the pain of denying this man he loved and worshipped. And in that moment, Ted proved himself to be worthy of that devotion, because he understood that what had just happened was not about him. Not about whether or not James loved him. It was about James trying to manage the walk between fitting in with his same-race peers and loyalty to his family—race vs. adoption vs. his own personal identity. And in that moment Ted understood that the injured party was James.

We spent a lot of dinner-table conversations discussing how to handle such situations in the future. We all had suggestions and ideas. In the end, James and Dexter became fast friends because it turned out that Dexter had a white mother himself and had been looking for an ally in James. But that was later, and it didn’t change the challenge of the moment when James had felt he had to choose.

Getting to the end of the block and having a father who recognized his pain—this is what James needed. On this day and many others like it, Ted was my hero, because he showed the true meaning of acting in “the best interests of the child.” If I am honest with myself I have to acknowledge there were more times than I care to remember when I failed in that goal.

I was recently advising a parent whose eight-year-old is asking questions about his birth mother: “Where is she? Why did she choose adoption? Did she love me? Does she think about me?” This boy is on target developmentally, expressing what research tells us are normal questions for an adopted child his age. But Mom was struggling. She finally confessed that her son’s questions were hurting her feelings.

Mom felt bad, she didn’t want it to be about her, but she was struggling with her own buried fantasy that her son would grow up so satisfied with his relationship with her that he would never need to wonder about his other mother, his first mother, and why he wasn’t with her. She knew better, she wanted to be better, but she was honest enough to admit that that she was wrestling with her own sense of entitlement, wanting to be able to fix her baby’s pain by being his only real mother, able to completely reassure and comfort him simply by expressing her own love and commitment. Opening the door to his other mother and her own lack of control was scaring her. I recognize her feelings within myself – within all of us who are our children’s last parents but not their first.

When I suggested to Mom that her reaction might put her son in the position of having to take care of her, instead of working on understanding his own experience, she whimpered and acknowledged what she already knew to be nothing less than the truth. And of course what I know is that she has already begun the most important work of being a good adoptive parent. We focus so much on picking just the right words and planning for particular conversations, but some of the most important work we will ever do is being able to hold our own adoption journey separate from that of our children. We need to let them explore, without having to worry about taking care of us.  We can then go find our own support and validation elsewhere, with friends, family, and professionals, but we should never ask our children to take care of our needs or fears.

For children adopted across racial lines, race and adoption often become inextricably connected. Many transracially-adopted adults talk about being unable to think about adoption as an issue separate from race. Because race is so obvious a marker of difference between members of a family created through transracial adoption, it is common for the child to experience his or her race as a powerful reminder of his or her adoptive status within the family. Racial differences may serve—sometimes appropriately, at other times inappropriately—as the universal explanation for all of their issues of “not belonging.”

This does not mean that transracially-adopted kids do not experience adoption-specific issues around loss, rejection, guilt and shame, grief, identity and intimacy. But it often means that those issues are  racialized. For children of color with white parents, loss can look like separation from other people of color, shame can feel like being ashamed of being the race that they are, and identity questions become focused on race and so on. Racial identity formation is already complex. Adoption identity formation is complex. Add these two together for children and the waters of self-identity and self-esteem become even more muddied, making the journey of finding oneself that much more challenging.

Just as we cannot prevent our children from experiencing the loss of their birth family, we cannot prevent them from experiencing the loss of growing up in a same-race family. No one can live in an environment “diverse enough” or “friendly enough” or “good enough” to protect children from the hurt of racism. Does it matter whether we live in a diverse area? Yes. Does it matter whether our children have mentors and role models who share their experiences as people of color and transracial adoptees? Yes. Will these life choices allow us to protect our children from the pain and hurt of having parents who can never fully understand their racial experience? No.  What we can do to take care of our children is confront our own blind spots and biases and work to become effective anti-racist allies.

What I believe is that James’ walk along that school yard fence is just one example of the mighty forces at work in the experience of our children. James’ long walk between his black friend and his white father, between races, between being born to a family and adopted by a family: this is the journey of transracially adopted children. Caught between parents they love and people in the world with whom they want to feel a connection, we adoptive parents need to walk with them as they navigate the complexity of having to explain themselves and their family situation to everyone who asks—without ever asking them to choose.

Beth Hall is an adoptive mom, co-founder and co-director of Pact, An Adoption Alliance—an organization dedicated to providing adoption services to children of color and co-author of Inside Transracial Adoption: Strength-based, Culture-sensitizing Parenting Strategies for Inter-country or Domestic Adoptive Families That Don’t “Match” 2nd edition, published by Jessica Kingsley Publishers.

Life Story Work with Children Who are Fostered or Adopted

A Day in the Life…

Katie: 8.30 Arrive at work and try to catch up with emails. Reply to a birth mother who has reluctantly agreed to meet to support me with information gathering for her son’s life story. Need to book a room for a couple of hours, anticipating that she will need to express her feelings about the legal proceedings and the role of Social Care in her family life before I will be able to explore more positive stories about the child and their family life. Mindful of what a big decision it has been for her to meet with me, but also a little apprehensive about how I’ll manage strong feelings in the room.

Katie: 10.00 Session with an eight year old looked after boy and his foster carer. We are three sessions into a therapeutic life story intervention. I decide to assess the child’s emotional literacy. He is a big football fan – plays and has a season ticket to watch his local team – so I use footballing magazines to encourage him to create some Mood Boards. Together the three of us trawl through the magazines looking for images of footballers that express a range of basic human emotions – happiness, sadness, anger. I encourage the child to identify the feelings and he uses me and his carer as able assistants to cut the images out ready to stick onto his boards. I am surprised by how well he manages with this task. He is not a very articulate child and it would be easy to assume because of his history that he would struggle to identify non verbal communications, including recognising facial expressions in others. We create boards that will be a great tool later in the sessions when it will be important to support him to express feelings about events he has experienced in his birth family. This is also a good opportunity to get to know more about what is important to him in the here and now. The foster carer is invaluable here in reinforcing his strengths and sharing successes he has experienced in placement. I come out of the session feeling energised and privileged to have been able to share and celebrate his achievements.

Lesley: 11.30 Life story clinic appointment. This is a chance for social workers to discuss a piece of life story work they are doing with a young person, whether it’s for a baby about to be adopted or with an 18 year old who has spent his whole childhood in care.

The social worker comes in full of enthusiasm and questions, which is always a good start. She’s working with a 14 year old boy who has had many short term placements and a very muddled up idea of why he came into care at the age of four. He desperately wants to know more. We start by trying to unpick the tasks in this piece of work; thinking about the whole thing can be rather daunting, especially when it’s only one of so many other jobs of the social worker. We think about where the information for the story can come from and who should be approached. I encourage the social worker to look not only at the official Social Care story to be found in the files but to find out who else knew this boy and what alternative stories could they tell? Family members, nursery and school staff, previous foster carers may all help to bring this boy’s story to life for him. Funny stories; moving stories; things we will never find in the files-and so important.

Then we move on to the time spent with the child and what to actually ‘do’. I want the social worker to consider activities to help the child to feel safe so that he is supported to both tell and hear his story. We plan some activities in the ‘here and now’ such as likes/dislikes, what this boy is good at, what his safe place would be like. We move on to thinking about giving the child a space to reflect on his own memories of his past. This is so important in order to know where to take the work and to assess how able the child is to access his thoughts and feelings about what happened to him. I suggest the activity of sculpting to help the boy express his views on past and current relationships. Having a bag of objects for him to use as symbols of the people who are or have been important in his life creates a 3D genogram which can tell us a lot about how he views his world.

I think this is enough for now and the social worker goes away hopefully feeling more confident and armed with some practical ideas. I felt the session went well but I always wonder whether I touched on all the points I needed to or gave too much information and overwhelmed the social worker. It always feels good to be able to share my experience and knowledge with new workers and one of the advantages of the clinic is that she can always come back as the work progresses.   

Katie: 1.00 Meeting with the Steering Group looking at how IT services can support Leeds social workers in the life story process. A new IT service has been commissioned and we are looking at what system requirements we can request that will provide some structure around the process. I am keen to emphasise the need to avoid a manualised approach that ignores the importance of the relationship between the child and worker/carer in the life story process and to highlight the need to personalise the life story for every child. That said, I’m relieved that some thought is being given at a senior level to how as a local authority we can ensure that all looked after children have timely access to high quality life story work – both in terms of process and end product. This new system will save a lot of time for workers by locating all information relevant to life story work including photographs and video as well as text together.

Katie & Lesley: 3.00  Meeting to discuss the training to be delivered in the summer to social workers and social work assistants who are engaging children and young people in life story work. We review the evaluations from the last training to look at areas where we can improve on the material we deliver. A priority for social workers is accessing support in sharing difficult information with children and we think about how we might create a resource that will provide some guidance and structure around common concerns such as domestic abuse, drug and alcohol misuse and parental mental health issues. As always it is important to stress that any information sharing needs to take into account the child’s chronological age, cognitive and emotional abilities and developmental stage.

We both feel very passionately about training delivery and really enjoy engaging with social workers around a subject we feel should have a much higher profile for all looked after children.

At the end of the day we reflect together on our growing understanding of the relevance of life story work in supporting children’s recovery from experiences of trauma and abuse. We are realising that we are increasingly using a therapeutic life story approach as the first intervention before considering our more traditional therapeutic training as art and play therapists.

 You can find out more about Katie and Lesley’s book and order your copy here.

Click here to sign up for a free copy.

Customers in the US who request a copy of the catalog before May 31, 2013 will also receive an email voucher good for a 10% discount which can be used to order the books in the catalog. This is an excellent opportunity to pre-order a copy of Tony Attwood’s forthcoming book, From Like to Love for Young People with Asperger’s Syndrome or Mild Autism, to check out Jennifer Cook O’Toole’s latest bestseller, The Asperkid’s Launch Pad, or to get hold of Elle Olivia Johnson’s Parent’s Guide to In-Home ABA Programs which was called “required reading” by Library Journal.  

You can also use the discount to augment your library of JKP’s top 12 best selling books for working with children and young people on the autism spectrum, including:

• Freaks, Geeks and Asperger’s Syndrome by Luke Jackson
• Kids in the Syndrome Mix of ADHD, LD, Asperger’s, Tourette’s, Bipolar and More! by Martin Kutscher
• The Complete Guide to Asperger’s Syndrome by Tony Attwood
• My Social Stories Book by Carol Gray and Abbie Leigh White
• Everyday Activities to Help Your Young Child with Autism Live Life to the Full, by Debra S. Jacobs and Dion E. Betts

To request a copy of our Children with Autism Spectrum Conditions catalog, please click here. The catalog will arrive shortly in the mail. You will receive your 10% discount voucher via email at about the same time.

If you are already on our mailing list and would like to take advantage of the 10% discount, please feel free to request an email voucher by sending a request directly to orders@jkp.com

Click this link to see our full listing of books on Asperger Syndrome, Autism and other Syndromes.

Egg donation—how did it all begin? There are published records from as early as the late 1800s of experiments conducted on women who lost their ovaries at young ages. However, it was not until the arrival of in vitro fertilization in 1978 that physicians had a means for enabling a woman to become pregnant with another woman’s eggs. The first child born through egg donation was born in Australia in 1983.

In its early years, egg donation, though possible, was not readily available. The first donors were either sisters or cousins (of their recipients) or they were infertile women who were undergoing IVF. Since cryopreservation of embryos was not available to all, some of these women had “extra eggs” for which they had only two options: discard or donate to other infertile women. Another group of early egg donors were women seeking tubal ligation who were invited to donate their eggs in exchange for the cost of their procedure. Either way, donated eggs were relatively few and far between and for the most part, came from women whose donation was based more on practicality or expediency than on an affirmative decision to help an infertile couple. The scarcity of eggs made the experience challenging for would be recipients who had little way of knowing if and when donated eggs would become available to them. One mother of a now 23-year-old through egg donation recalls taking medications over an extended period of time to ensure her uterus was ready for implantation should a donated egg come along. She was literally “on call” for news that an egg was available. When the call came, there was no asking about who the donor was or what her genetic history revealed. The recipient was instructed to go immediately to the fertility clinic, where she underwent a full laparatomy (a surgical incision in the abdominal area) and a gamete intrafallopian transfer (GIFT procedure). The donor’s eggs were mixed with the recipient’s husband’s sperm and placed in her tubes.

Much has changed. Not only has IVF fully replaced GIFT as a vehicle for egg donation, but beginning in the late 1980s, women were actively recruited for voluntary egg donation. This began in medical clinics, some of whom continue to recruit donors. However, in the United States, independent “Egg Donor Agencies” rapidly replaced medical programs as the main source of donated eggs. By the late 1990’s it was common to see adds like the following in college newspapers:

“Make a dream come true. Help a childless couple become parents. If you are under 34, healthy, a non-smoker, please consider donating some of your eggs. You will be compensated for your time and effort.”

The arrival of these programs transformed egg donation from something extremely difficult to arrange to something that, with financial/health insurance resources and access to medical treatment, can be launched with a few visits to internet web sites. One need simply type in “Egg donation” to be connected to agencies with names ranging from “Precious Wonders” to “Tiny Treasures” to “An Angel’s Gift” to “Peas in a Pod” and “Our Fairy Godmother.” As of this writing, there are 94 Egg Donor Agencies listed on the website of the American Society for Reproductive Medicine. Most have tantalizing websites that offer hope to infertile couples many of whose journey to parenthood as so far been filled with only disappointment and loss. They also offer the promise of financial and emotional reward to young women who are invited to undergo ovarian hyperstimulation and egg retrieval.

Just as there have been changes in the availability and accessibility of donors, so also have there been shifts in the way people think about egg donation. In the early years there was a real sense that the science was advancing far more rapidly than our understanding of what it means for a person to be physically born to three people. Instead of taking note of what a seismic shift this marked in human reproduction, physicians presented egg donation as a treatment for female infertility. In so doing, they missed the opportunity to examine, make sense of and ul†imately celebrate what egg donation means for identity formation and our understanding of kinship. Sadly, egg donation was pushed into the shadows, spoken of in hushed tones and burdened by secrecy.

The experiences of parents through egg donation, their children and their donors changed significantly with the arrival of the Donor Sibling Registry in 2000. This US based worldwide registry was founded in 2000 by Wendy Kramer and her son, Ryan, who was conceived via sperm donation. The registry helps people connect with donor relations.  In the 12 years since its founding, the DSR has helped connect over 9200 individuals with their donor relations. Wendy Kramer reports there are on average two new matches every day. For egg donation families, this has meant that parents have connected with donors, donors with offspring and as the name of the DSR suggests, offspring with other offspring.  As word of the DSR has grown and with it, people’s appreciation of the significance of genetic connections, families have been turning to the DSR in new ways. As of this writing, there are several egg donor agencies in the US that include the DSR in their donor-recipient contracts, making it possible for people who want anonymity (or at least to start out with no identifying information) to remain in touch and share photos and updated medical and social information.

Where Are We Today?

Looking at egg donation today we see a very different picture from what we saw even as recently when we prepared our 2005 edition of Having Your Baby Through Egg Donation.  In addition to the changes noted above, we see changes in the way ED parents feel about their path to parenthood. The secrecy that prevailed in the past has lifted and been replaced with honesty and privacy. True, there are some ED parents who still feel they have something to be secretive about, but increasing numbers are treating their child’s story as an open but private matter. They don’t go around saying “my egg donor baby” etc, but acknowledge donor conception when there is a reason to do so. In talking about it in a natural and appropriate way, most find that others are fully accepting of and comfortable with egg donation. Accompanying this more open approach to egg donation in general has been increased comfort with the donors.  As one mother through egg donation put it,

“When I first heard about egg donation, I did not want to meet my donor because I thought that I would see her face in my child and it would upset me. Now I feel the opposite. I have twins and one looks just like the donor. I love it because it is a constant reminder of the remarkable woman who helped make us a family.”

With increased comfort and familiarity with egg donation has come increase use of this option. Or perhaps it is the reverse—as more people have become parents through egg donation, more of them have become comfortable speaking openly about it. Either way, the use of egg donation is on the rise. In 2010, the most recent year for which the SART (Society for Assisted Reproductive Technology) statistics are available, there were 9, 321 transfers using donated eggs. Over 55% of these result in live births. This is the official SART number. Wendy Kramer of the DSR found, in surveying parents through egg donaton, that 42% were never asked to inform their clinic whether they had a live birth. Some did so voluntarily and others did not. If we add in the pregnancies that resulted from frozen embryo transfers, there were over 8,000 births in the US alone (in 2010) from donated eggs.

So egg donation in the US is accepted. It is also common. And it is available. All that said, it can still feel overwhelming to embark on a path to egg donation. Recipients must identify a medical program that they have confidence in, figure out how they will afford the medical treatment and often, donor and other fees and they must find and secure a donor.  All of this is do-able but it takes time, wherewithal, money, stamina and information.

Although egg donation has enjoyed widespread acceptance and relatively little scrutiny in the United States, this is not the case throughout the world. In Italy, for instance, a law was passed in 2004 completely banning oocyte donation, banning as well use of donor sperm and helping women past childbearing age becoming pregnant via ARTs. The road to this law started in 1994 when Italy made headlines when Dr. Severino Antinori used donor eggs to get 63 year old Rosana Della Cortes pregnant. Robin Marantz Henig’s New York Times article (2004) states,

“We are learning the wrong lessons from our earlier misadventures. Things got a little out of hand, yes, but that is because governments around the world adopted a hands-off policy towards the whole affair. It was too complicated to reach consensus about what steps were too intrusive, about when human life begins, about what risks were worth taking for the sake of having one’s own biological child. So governments turned their backs on reproductive technology and allowed the field to be taken over by cowboys.”

Still, unable to come to a consensus about exactly what should be accepted and what should not as far as egg donation, countries like Italy, Austria, Norway, Sweden and Switzerland have also nearly eliminated ovum donation. While such strict laws serve to call everyone’s attention to the potential for ethical abuses in egg donation, they also create new social problems. There now exists what has been termed “fertility tourism”—people living in countries that ban oocyte donation are traveling to other countries to obtain eggs.

Visit our website to get additional information or to order a copy of Having Your Baby Through Egg Donation 2nd edition by Ellen Sarasohn Glazer and Evelina Weidman Sterling.

Practical Mathematics provides a set of simple, hands-on strategies and tools for teaching key mathematics concepts to children with an autism spectrum disorder and other developmental delays. With an emphasis on the importance of incorporating a child’s special interest into learning Adkins and Larkey strive to make maths fun for all children on the spectrum. Topics covered include colours, shapes, categories, numerals, sequencing, addition and subtraction and using money, and the book includes worksheets and activities for incorporating mathematics into daily living skills.

We have 5 copies to give away to anyone interested in writing an online or offline review.

If you’re interested add a comment to this post saying why you want to review this book.

We will get in touch.

This giveaway is now closed.

If you’d like to print off a copy of the booklet, simply click here to download and print.

“When do I talk to my child about ASD? He’s 10 at the moment.” From Lisa

As a general rule, I think the best time to explain your child’s diagnosis is when he or she starts asking about it, or seems to realize he or she is different. If you try to explain it much earlier they may not be able to see any difference (and so not really believe it) or they might not be able to fully understand it. However, if you leave it later, then realizing you are different, but not understanding how or why can be quite an upsetting or depressing experience.

I remember when I started to realize that when I different, I was about nine or ten (but other people will realize it at different times). There wasn’t one moment, but over a period of months, maybe a year, I started to see that I seemed to think in a different way, and that I had problems understanding how other people expressed themselves. This made me start to get a bit depressed, and encouraged me to spend more time alone. Other people get depressed, but express this by getting angry at other people – “its your fault, not mine” type thinking.

On balance, too early seems better than too late, so I would err on the side of caution. However, there is an important caveat to all of this. I can only tell you when I feel is best for most children, but this will not apply to all. Equally, knowing that your child has realized they are different is very subjective. Ultimately, nobody knows your child better than you. Most parents, when they ask me this question, tend to have a “gut feeling”, and are looking for re-assurance to follow their gut. My advice is to follow that gut.

On a final note, one way that I often recommend introducing the idea of ASD for younger kids is the excellent book All Cats Have Aspergers Syndrome by Kathy Hoopmann. For older kids, looking at some of the big figures in history who are thought to have had Aspergers Syndrome can be a good way (Michael Fitzgerald has two great books for this The Genesis of Artistic Creativity and Genius Genes). The important thing is to introduce it as a pattern of strengths and difficulties. The name is simply a way to describe that pattern, and to allow people to share strategies to maximize strengths, and find ways to overcome difficulties.

“Hi Josh how did you cope with the move from primary to high school and what tips would you suggest to help my son going through this transition?

Moving to secondary school is a demanding time for any child, but particularly for those on the spectrum. The unfortunate truth is that I didn’t cope at secondary school. I didn’t have a diagnosis at that time, or any sort of support from the school, which meant I went down hill quite quickly. Your child, however, is in a different position – he or she has a diagnosis. In the UK that gives you some leverage with the school, who, as far as I am aware, are required under the Disability Discrimination Act to make reasonable adjustments in order to accommodate disabilities, regardless of whether or not your child is statemented (quoting the disability discrimination act at them not only makes you look smart, but also tends to start things moving).

Ultimately, kids with a diagnosis going into secondary school are already going to be working much harder than every other kid, because lunch time and break time aren’t breaks for us, and in addition to learning the academic stuff, we are also learning the social stuff. If we are giving 100% to try and adapt, we need the school to come the rest of the way. Providing teacher training/education, safe areas to go during breaks, a single teacher who we go to for any problems, and the ability to leave classes to cool down for 5 mins, are all ways that have been used effectively in the past, to different degrees for different people. However, the most important thing by far is preparation.

Preparation is for both the school, and the student. For the student, it is getting to know teachers, rooms, routes, sights, sounds, smells, routines, schedules, and 101 other things, so that they are going into school on day one knowing exactly what is going to happen, and what to do. For the teachers, it is about learning about the student: understanding both the diagnosis and the individual, and how best to support that particular student. Through this preparation, student, parents, and school should be able to identify potential problems, and their solutions, well in advance, to try and facilitate a smooth transition.

I have created two documents to help with school transitions, both of which are available for free on my website (www.mugsy.org/josh). The first is a 1-page (double sided) information sheet about Aspergers Syndrome for teachers. This is designed to give them the basics of the diagnosis, and tips for teaching people with AS, all on one piece of paper that they can keep to hand. The second is an information sheet (double sided) to be filled in by the student, staff and parents, to give teachers a quick guide to this particular individual, and how to support them. The whole idea with both of these documents is to give teachers the necessarily information quickly, easily, and in a form that they can keep to hand.

Joshua Muggleton is the author of Raising Martians – from Crash-landing to Leaving Home (2011) published by Jessica Kingsley Publishers.

Part of our celebration of World Autism Awareness Month 2013- see more posts on Autism, Asperger’s Syndrome and related conditions.

Amanda asks “my two are hermits and hate socialising. They tolerate it but I would like to make it less stressful for them. I’ve tried all the usual things of iPod and head phones, shopping on quiet days, chew buddy, iPhone gaming… Any other suggestions would be good.”

It sounds like you’ve done a good job of considering some of the sensory concerns that may bother your kids, Amanda. That’s a great start. At least as important is making sure that “typical” social expectations aren’t being imposed upon kids who aren’t wired typically.  In other words, do they want to have new experiences and friends….or is that what others want for them? It’s so hard for us, parents, to tease apart our desires from our children’s.  And Asperkids, by their very nature, are going to need less (not none, just less) socializing and more “down” time.  That needs to be respected. But, if your kids are feeling “stressed” in social situations and you’ve got the sensory stuff nailed, the other major component is anxiety.  Your kids love gaming because the rules are clear and predictable. People are anything but! So who would want to get out there and hang? When the world feels chaotic, it feels scary.  That’s why I wrote The Asperkid’s (Secret) Book of Social Rules. It’s a comics-infused explanation of the world’s hidden social rules that levels the playing field for ALL of our kids.

Hannah asks, “How do you teach your child that there are hierarchy in roles , ie- mum and dad aren’t told what to do by a child, but a child is told what to do by an adult… Such complex understanding is needed from such a young age, mostly I guess its inflexible thinking that causes our son to tell us what to do- but we are the parents not him… But explaining that to a 5 year old is something that I’m having difficulty with! Can you offer any tips?”

This is a really common problem! In fact, it’s such a biggie that The Asperkid’s (Secret) Book of Social Rules has a whole chapter devoted to making corrections (or not) and the sticky hierarchies that complicate everything. Really, the issue is that we Aspies crave accuracy. When something’s amiss, it needs fixing….now. Leaving it “wrong” (or seemingly wrong, anyway) is as difficult and distracting as ignoring an itch. To really help your son understand the “why’s,” please read the Rule Book yourselves, and then simply translate for his age (I’ve done this for my 6 and 3 year-old). For right now, here’s a super-shorthand you can use for the “hierarchy” issue: Down, yes (gently). Across, maybe. Up, no way.

“You can kindly correct someone over whom you have control or influence…only correct a peer if you HAVE to — they won’t like it….and never, ever, ever correct an elder or authority figure…unless safety demands it, correcting “up” is just rude.”

Sarah asks,  ”how can we teach our 8 year old son the concept of time and being ready for things, such as school, outings, doing jobs etc by a certain time? We have tried timers and visual schedules but he gets lost in looking around and touching things he doesn’t take notice of his timer.”

Oh, Sarah, I know the feeling! This is a big one at our house, too. Generally, we rely on a few tools:

• a visual timer (see Resources in Asperkids — this is NOT the same thing as a regular timer)
• streamline your home. The Asperkid’s Launch Pad is all about how very specific, easy changes in the way you lay out his environment can have an enormous impact on the day.
• set way points – break down every task into smaller milestones so he doesn’t get lost mid-process and then be insurmountably behind.  So, instead of “You have 10 minutes to get dressed” say, “Change pants. Change shirt,” and have him repeat the shortened directions out loud as he does it (almost like a whispered chant). He shouldn’t say or do anything else until those words are “done.” Then, move on to the next step, be it brushing hair or getting socks.  The same thing goes for schoolwork, etc. (You can also read a blog I wrote about this at www.Asperkids.com/candyland)
• use technology! Reminder alarms and messages on iPod’s and smart phones can keep everyone more on-track.

Pam asks, “will his self stimming behaviors ever decrease? Every year I hear from his teachers and the Occupational Therapist that he has a “tool box” of sensory strategies to use, but it doesn’t seem to help much. Can you offer any advice that will help?”

“Stimming” is a way of decreasing anxiety and increasing focus – just the way you might bounce your knee or tap a pencil in a long meeting.  While some of the needs met by stimming may be sensory, that’s not the whole story.

Anxiety is the basis for stimming…and a whole lot of what we, as Aspies, do.  In order to reduce one anti-anxiety behavior, Pam, you need to offer another solution (if you took away my private “in case of stress” M&M stash, I’d sure need a substitute!).

Look more closely at what’s happening when your son is stimming most: what’s making him nervous? Use The Asperkid’s (Secret) Book of Social Rules to counter social anxiety.  Provide chewing gum (two pieces at a time – tell school it’s a MEDICAL NECESSITY) or a very sour hard candy and lots of “fidget” toys, all of which will send calming signals to his mind and body. There’s more practical information on this very question in both The Asperkid’s Launch Pad and in the upcoming Asperkid’s Game Plan.

 Lynne asks, ”I believe I may have Asperger’s due to problems in social interaction since childhood. I am socially awkward and often feel overwhelmed when there is a lot of stimuli, even when surrounded by family. I have found ways to accomplish tasks that I once found difficult by organizing and planning things. But if something happens to change my plan, I melt down. I have been admonished at work because of having to have things done “my way”. I have found ways to function in life. Do you see any benefits of getting diagnosed at the age of 56? And what methods may be used to help me? Is it worth the time and money for me to pursue this at this point?”

Knowing yourself better is important at EVERY age.  Your life isn’t over, Lynne! Don’t dismiss the value of the many years left ahead of you by underestimating the power of insight.

If you think you are an Aspie – odds are that you’re right.  Read Asperkids, and you’ll see just how powerful the impact of my own adult diagnosis was in reframing the way I saw my past, present and future.  After all, the better you “get” yourself, the more healthy relationships you will have, the more satisfying work you’ll accomplish, and more effectively you’ll be able to meet needs you may not even realize you have.

With or without a formal diagnosis, read The Asperkid’s Rule Book. You may not be a teenager any longer, but know that I started writing that book as a journal for myself at age 34…and I’ve had adults (your age and older!) from all over the world tell me that this book has literally changed their entire lives.  I hope it will give you the same peace of mind and spirit.

Jennifer Cook O’Toole is the author of Asperkids: An Insider’s Guide to Loving, Understanding and Teaching Children with Asperger Syndrome (2012), The Asperkid’s (Secret) Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger Syndrome (2012), and the forthcoming The Asperkid’s Launch Pad: Home Design to Empower Everyday Superheroes (April 2013) all published by Jessica Kingsley Publishers.

Part of our celebration of World Autism Awareness Month 2013- see more posts on Autism, Asperger’s Syndrome and related conditions.

Norelle asks,”I have read both the Exploring Feeling Books and have a question relating to warning signs. We are supporting an 18 year old man who frightens himself when he gets angry and frustrated and then doesn’t remember the moment that he loses control. How do we help him identify the warning signs of a meltdown when he is unable to identify what is happening to him?”

Thank you, Norelle,  you raise a very interesting point in that sometimes, the intensity of the emotion almost wipes out the frontal lobe ability to control but also remember specific events.  We sometimes use the term, a blind rage.  With regard to the warning signs, often the last person to know they are about to lose control is the person with Asperger’s syndrome.  However, there may be internal physical signs such as increasing heart rate and perspiration.  It may be possible to use some of the new sports equipment that measure heart rate which can be used by the 18 year old to monitor his level of agitation, or for those who support him to check his level of agitation.  This may provide the warning signs.  Another option is to list the behaviours and thoughts that indicate increasing agitation and have these down on a Thermometer to measure is intensity of emotion.  Those who support him may then point out that such behaviours or thoughts seem to indicate an imminent meltdown and that it may be wise to use some of the strategies from the Toolbox.

We have had a lot of questions relating to boys hitting puberty and struggling to control their emotions, do you have any top tips on how to help teenagers regulate their anger and anxiety?

I think in many ways, the previous question will also answer some of the points raised in Question 2, especially to be aware of the physiological signs of increasing anxiety or anger and those who are friends, teachers or family members knowing the situations or behaviours associated with increasing anger and anxiety.  We particularly now work with peers at High School to help such individuals recognise the increasing level of agitation and to give them guidance in how to help the person in situations where there may not be a teacher nearby.  For typical children, they may have many friends who notice that their friend is becoming anxious or angry and either reassure or calm down effectively.  The person with Asperger’s syndrome may not have a friend who can do this but there may be one or two individuals in the person’s class or peer group who could help the person monitor their emotions and step in to manage the anxiety or anger.  The other strategies are once agitation is recognised, the wisest response is to walk away from the situation that could lead to feelings of anger, especially when being bullied, teased or rejected.  I am not sure that this would be the wise approach with anxiety as it would be best if possible, to be brave and cope with the situation that produces strong feelings of anxiety.  It is very important to maintain self-control when feeling angry or anxious and sometimes, strategies used the in Martial Arts can help that person stay calm, cool and intelligent.

Our followers were also interested in how to help children acknowledge and verbalise their concerns. Nancy asks, “How can I get my child to open up about when things are bothering him instead of internalising his problems?”

This raises another important component in emotion management with regard to the ability to disclose the cause of the emotions and to describe inner feelings.  Often, the person with Asperger’s syndrome can be asked “how are you feeling” or “what caused your feelings of anxiety, anger or sadness” and often the person may reply, “I don’t know”.  This may be translated to “I don’t know how to put my feelings into words so that you will understand” or “I really do not know what is going on in my mind”.  It may help to have direct questions, for example, “is this an emotion associated with home or school?”  If the person replies “school”, ask “is it associated with the schoolwork, a teacher or your peers”.  The next question, “is it associated with what someone said, did or both”.  I would also recommend Carol Gray’s Comic Strip Conversations to draw the event using stick figures and speech and thought bubbles.  Another option is to ask the teenager to find a music track on iTunes that perfectly describes in the music or lyrics, their feelings and the music may speak volumes.  Another option is to type rather than talk and to send an email describing the emotions and the causes.  Those with Asperger’s syndrome have considerable difficulty in looking at someone and talking as a means of expressing inner thoughts, feelings and experiences.

Zoe asks, “My daughter (5 years old) has autism / Asperger’s – I know girls present differently from boys – is there anything I can expect in the future or watch out for that I need to be prepared for?”

With regard to daughters as well as with sons, one of my concerns will be in terms of bullying and teasing and I do know that girls can be particularly cruel in using verbal forms of teasing and bullying.  I think it is important to identify one or two other girls who can act as your daughter’s guardian in terms of stepping to stop the rejection, bullying and teasing of other children.  Another concern I would have is that some girls can be angels at school but devils when they return home.  That is, that they know that they have to be compliant and well behaved at school but this has been so exhausting and stressful that when they come home, they can be a very different character.  This indicates that there is great stress that is not being communicated at school and you would need to go through with your daughter, ways of decompressing and releasing her stress when she comes home in constructive ways.  I would also be concerned that some girls may take advantage of your daughter’s naivety and develop almost a master/slave relationship.  It is important to check the integrity of those who may become her friend.

Angela asks, “What are your thoughts about autism and diet? My 3 year old autistic daughter also suffers from temporal lobe epilepsy. Consultants have suggested the few foods diet, but I am not happy with this suggestion; I find it hard to believe autism and epilepsy can be related to diet and allergies?”

I think there is a relationship between the degree of expression of ASD characteristics and diet but we have no biological or even psychological way of determining who would benefit from a diet.  This can include taking away items in the person’s diet that may have gluten or casein but also whether additional components to the diet, especially in terms of vitamins and fish oils, may help.  From my clinical experience, I know of those with autism and Asperger’s syndrome who have benefited from a restricted diet yet there are many others for whom diet has had no effect on abilities and behaviour.  In many ways, you will not know until you try.  With regard to the three year old daughter who suffers from temporal lobe epilepsy, there have in the past, been specific diets that have helped manage epilepsy but usually, this has been after conventional strategies such as anticonvulsant medication have not been successful.  I am not sure what the consultants mean by the few foods diet and in many ways, I also trust the intuition of a mother in knowing what would be appropriate for her child.  There does not appear to be a clear link between autism and epilepsy and diet and allergies, so I would be cautious as to how diet and allergies may effect epilepsy but there could be an effect on your daughter’s profile of autistic characteristics.  I would generally urge caution and certainly, monitoring the situation with a dietician.

Edward asks, “I have just been diagnosed with Asperger’s Syndrome. I’m 61 this month. What do I do now?”

With regard to being diagnosed with Asperger’s syndrome, the person says they are 61 and clearly did not have an opportunity to benefit from the programs that are available today for those who are at school and are young adults.  However, knowledge of Asperger’s syndrome may explain past experiences and lead to a greater level of self-understanding and the ability to explain one’s self to others.  With regard to what do I do now, I suggest that you go to www.jkp.com, and explore some of the autobiographies that you may be able to identify with.  While this information may not be relevant in terms of career or relationships, those who know you may then benefit from a greater understanding of why you are different and you may be able to appreciate some of your talents that are due to Asperger’s syndrome.  Thus, when asked what do I do now, I suggest that you read some of the books written by adults with Asperger’s syndrome of similar age.  I would also recommend going on to the Internet to seek advice from those with Asperger’s syndrome, again from your generation, as they may be able to provide support and understanding.

Tony Attwood is the author of The Complete Guide to Asperger’s Syndrome (2000), Asperger’s Syndrome (1997) and the forthcoming titles, From Like to Love for Young People with Asperger Syndrome and Mild Autism (2013) and CBT to Help Young People with Asperger’s Syndrome or Mild Autism to Understand and Express Affection (2013) all published by Jessica Kingsley Publishers.

Part of our celebration of World Autism Awareness Month 2013- see more posts on Autism, Asperger’s Syndrome and related conditions.

Tips and Advice for Grandparents from JKP author Charlotte E. Thompson.

Grandparents who have a grandchild with severe allergies
tell me they live in fear of having the child eat something
to which their grandchild is very allergic. Even when grandparents carefully check the labels on everything a grandchild eats, there can always be an ingredient that is not listed. Serving simple foods with known ingredients can lessen the anxiety. As the child grows older, he or she can be taught to ask questions about foods and learn what is safe and what is not safe to eat. The child must also be taught not to trade foods with friends.

Taking an allergic grandchild on a trip can be a real problem, but there are ways to get help. The U.S. travel agency, Grandtravel, has pamphlets they can send and they will also plan a trip to keep a grandchild safe from harmful foods. The Food Allergy and Anaphylaxis Network can help with pamphlets and information, and their website is www.foodallergy.org. Eating in a restaurant can be a problem. Calling ahead of time to a restaurant or stopping in to talk to the owner about a grandchild’s food allergies can be helpful.

PREVENTIVE MEASURES

A child with severe allergies should always wear a bracelet, such as those than can be purchased from MedicAlert and similar companies. The bracelets list the child’s allergies and give a number to call for information. All family members should be aware of the allergies and know what to do in an emergency. Babysitters and child-care staff should also be alerted, as should teachers, and other people with whom a child spends time. If a child goes off to camp, careful investigation is needed about the medical care and the closest medical facilities. It would also be wise to speak with the camp director or nurse.

Epinephrine can be lifesaving if a child has a severe allergic reaction and comes in the form of an Epi-Pen in the United States. Similar products are available worldwide, I am sure. An Epi-Pen should be available in the home, grandmother’s purse, the car, at school, and at a relative’s or a good friend’s house, if the grandchild spends a lot of time there. Expiration dates need to be checked to sure they are always current. Grandparents who are fearful of giving an injection can take an orange or grapefruit to their doctor’s office and get the nurse to show them how to give injections.

Any child with severe allergies should have seen a pediatric allergist and be under his or her supervision and care. Often allergy injections given over a long period of time can help decrease the severity of the allergy. Sometimes, too, the doctor can find out that foods thought to cause a problem were not dangerous after all. The foods most responsible for allergic reactions are: milk, eggs, peanuts, fish, shellfish, soy, wheat, cashews, and almonds.  Keeping a food diary for a few days could help sort out what is causing a problem.

It is important, too, that general health needs are not overlooked. Every child needs a yearly complete physical examination, as well as a complete blood count (CBC), urinalysis, and tuberculin skin test. Often these are overlooked.

It is comforting to know that allergies usually lessen with age, but caution is always advised. It is important that grandparents treat allergies in a matter-of-fact way, so their own anxiety does not make the grandchild anxious.

Charlotte E. Thompson, M.D. is a pediatrician and specialist in children’s muscle diseases. She founded and directed the Center for Handicapped Children in San Francisco for 23 years and has worked as a consultant for six pediatric neuromuscular programs. She is a mother of two and a grandmother and lives in California. She is the author of Grandparenting a Child with Special Needs, published by Jessica Kingsley Publishers.