April 2, 2009

Autism Awareness

Today is Autism Awareness day and April is Autism Awareness Month. I don't know who decides these things, but I'm glad there are people out there advocating for autism. 

In case you don't know, autism is a disorder affecting the brain that shows itself in three main areas: 1) language development is difficult and sometimes lacking 2) social relationships and understanding social cues do not come easily and 3) obsessions and self-stimulating behaviors are demonstrated. Autism does not show itself the same in every person, which is why they call it a spectrum, as in "My child is on the autism spectrum." Some people are severe, with little to no language or social ability, but others function quite normally, but struggle to "get" things like others do naturally.

If you asked around, you would likely find that autism affects someone you know or someone they know. When a family faces an autism diagnosis, it is devastating. The devastation grows into acceptance, but there are always daily reminders that our children are "different." I hope this month will remind you that there are many families out there walking through difficult times because of autism. Pray for them. Be compassionate toward them. I appreciated just today receiving an email from a friend who prayed for us this morning because it is Autism Awareness Day. If you don't know what to say to those you meet who have children with special needs, over the next few days I'd like to include some questions I answered recently for a friend writing an article on including special needs children in the church. I also look forward to writing more about Will and the progress he's making in fighting off autism.

1) The people (friends, neighbors, nursery workers, school teachers -- anyone you can think of!) who have entered our world and offered appreciated support have done or do the following.....

I have appreciated those people who have been willing to ask questions about Will, his disability, and how it affects our family. I have found many people are afraid to broach the subject with me, for fear of offending me or not knowing what to say. I am encouraged when friends have tried to understand or have acknowledged my situation. I was especially comforted by this when we first received the diagnosis and especially hurt when people avoided talking about it when I was grieving the diagnosis.

I have also appreciated when teachers and therapists that have worked with Will have reminded me that God has a plan for Will’s life, that there is hope for him, and encouraged me not to give up. When a parent is hurting and grieving, especially at the beginning, these words are gold.

At our previous church where we lived when we received the diagnosis, there were several people who touched our lives. The preschool minister told me often that she was praying for Will and that she was excited about God’s plan for Will. His AWANA teacher gave him special attention. And we had several college girls who would practically beg to babysit and spend time with Will.


2) Have you ever felt excluded  -- from a social group, an event, anything -- because of the disability inside your family?

I haven’t felt excluded, but I have felt the stares and judgment of those who are not aware of what my child’s struggles are. Sometimes, just because Will is not typical, we stand out and that can’t be avoided. The situation just becomes excruciating when people lack compassion or know the situation but don’t take the time to get to know Will as a person and understand how his disability affects him.

3)  What are some successful environments or ways you have observed your child with a disability to fit in among typically developing children?  Same question slightly rephrased:  Are there places or ways for both your child and the typically developing children to play and enjoy one another?

My son has progressed and excelled mainly because of his interactions with typically developing children in a school setting.

4) Have you received unwelcome advice on either the diagnosis of the special need or for how to handle it?  Is this a common problem?  How did/have you responded in such instances of ignorant or unwelcome opinions?

 Yes, I have received unwanted advice, especially around the time Will was diagnosed. It seemed everyone had a friend or acquaintance with a child with autism that I was encouraged to contact. I also received internet sites to check out. Everyone had an opinion about the cause of autism and what I should do to help Will. I really wanted only the advice that I sought out from professionals. Some people tried to talk me out of it, saying “He’ll grow out of it” or “My kids do that too!” I knew they were just trying to make me feel better, but it didn’t. From friends and family, I didn’t want advice. I wanted empathy and support through listening. I often felt like people thought they knew what I was experiencing or didn’t give full weight to what we were walking through.


5)  Do you welcome questions about the diagnosis and special needs?  If so, do you prefer for those converations to be in private or do you have prepared words to offer if in front of the child/family member with special needs?

Yes, I definitely welcome questions. I think most parents of special needs children welcome questions, especially in a one-on-one situation when the child is not present.

Good questions to ask:

·      Tell me about how you discovered your child had his disability. (a good one for autism)

·      Your child is so fun to be with. What are the things you enjoy about having a child with special needs?

·      What are the challenges you face as a parent with special needs?

·      Do you ever feel overwhelmed? I would love to stay with your child while you have some time to yourself.

·      As a parent of a special needs child, how can we, as a church or small group, support you?

·      What are your child’s strengths? What does he/she enjoy doing?

·      What kind of struggles does your child have because of his disability?

·      How does having a child with a disability affect your other children?

·      What has God taught you through your special needs child?

·      What progress have you seen in your child in the past year/since his diagnosis?

·      What concerns do you have for your child’s future?

·      What treatments have been successful for your child?

It is important when asking questions not to imply that a special needs child is somehow not as worthy or important as a typical child, but to see them as a unique child, made and treasured by God, with both strengths and weaknesses like other children. A parent has an antenna for a derogatory attitude and will not want to answer that person’s questions. On the other hand, a parent will greatly appreciate and value individuals who accept and love their children for who and what they are.

I also greatly value questions from educators working with Will. Sometimes I get the impression that because they have had one autistic child in their class, they feel prepared. But I want them to get to know Will as an individual and get to know our family as a unique family.

6) If you could offer any advice to a family who has either just birthed or recently received the difficult diagnosis for a child with special needs, what advice would you give?  What is a way that you would have appreciated being better prepared early in your family's journey, or if someone did help/prepare you, what helpful wisdom did they impart?


·      First and foremost, know that there is hope for your child. It hurts very much, like the death of someone you love. But there is hope even in death and that hope is in Jesus Christ. Know that there is hope that your child will grow, will have friends, will be loved and accepted, and will be a blessing and not a burden to you and your family. It is a hard road to walk, but it is worth it.

·      Do what works best for your family. Every child is different, even special needs kids with the same diagnosis. Research the best treatments for your child, consider your entire family in choosing a treatment, and ask God to lead you in the right direction as far as treatment.

·      Seek out someone who has walked the same road for a little longer and talk to them about how you’re feeling. They will understand the grieving process and be able to encourage you. Someone did this for me. My husband and I knew a couple in our church who had a high-school age autistic son. We met with them and she told me what someone else had told her, “You are blessed to be raising a very special child of God.” That always stuck with me and reminded me to see Will as a perfect gift from God.

·      Start working to accept your child for who he is right now and not what you want him to be or hope him to be. The sooner you can get to that point, the better.

·      Avoid reading things or being around people that cause you to grow discouraged. I could not read the internet at all when I was researching treatments because it only left me deflated and discouraged and uncertain of what to do.

·      Find out what resources are available in your area. Call the school district. Call your doctor. Call community organizations. Find out about respite programs. At first you will want to hide your head in the sand, but at some point you have to reach out for help and resources.


7)  This is the most personal question...answer or don't answer as you feel led:  Did you experience grief upon receiving your child's diagnosis or when you initially realized your child had a unique challenge?  Do you feel as though your close friends (and family!) understood and supported you through this grieving process?

When we received Will’s diagnosis, I grieved greatly. My husband and I shed many tears in those first few months. It feels as if a dream has died. We knew many of the dreams we had for our child and our family could no longer happen. I wanted to deny it and I wanted life to go back to normal, but I knew it never would. Those months were heavy, definitely the hardest thing I’ve had to walk through.

I don’t think many people understood that we were grieving, but if they did, they certainly did not understand the depth of the grief. I was desperate to talk about it, but I think most people didn’t know what to say or ask and I didn’t want to be the “downer” and bring it up. What I wanted more than anything was the opportunity to express the depth of my grief and for people to listen and empathize.