The Biggest Need For Families With Disabilities

I may be too presumptuous in making a judgment about all families with disabilities, but I'm at least confident that this applies to a good majority of families. I believe that the biggest need for families with disabilities is respite.

What is respite? Respite is when someone watches your child so that the family can either get some rest or do some activity that they wouldn't normally do. It could be for a couple of hours or even for a weekend. This is not babysitting, as caring for a person with a disability is more complex.

The biggest need is not finding money to pay someone, the biggest need is finding someone to do the respite. There were many times that we had funding to pay for respite but had no one who would do respite for us. I have recently heard of other families going through the same thing.

Why is it so difficult? I assume that many people are intimidated by the idea of caring for a person with a disability. While it isn't for everyone, it is also not as overwhelming as some assume.

If you are a church that is looking for a way to minister to families with disabilities, offering respite would be a great place to start. There is a huge need and actually doing it is not that difficult. Consider how your church might be able to make a difference in this area.

Disability Ministry is Not Just to Those With Disabilities

Disability ministry is extremely important. Churches must be reaching out to those with disabilities. But that should not be the only goal for disability ministry.

While not taking away from the needs of those with a disability, disabilities affect the entire family. Much of the contact that I have is with parents of children with disabilities. I know from experience that it is not easy. There are all sorts of financial, physical, emotional and spiritual challenges that go with being a parent. The same is true with being a sibling.

If your church wants to become disability-friendly, you need to take a wholistic approach. Yes, provide a safe and welcoming place for the person with the disability. But consider how you can minister to the rest of the family as well. You can really make a difference.

Good News: Happy Birthday Abby!

Although my website is back up, I'm not posting there until I have transferred to my new host and I do a bit of redesign. So once again, I will do my Good News post on this blog rather than my other one. That is fine as my good news is autism-related.

Tomorrow is our daughter Abby's fourteenth birthday. It is hard to believe that she is this old already. It seems like only yesterday that we were bringing her home from the hospital.

Abby is a major daddy's girl (just like Logan is a momma's boy). We have always been very close. It was one of the hardest things when she went off to a group home. But we have made good choices that have strengthened our relationship with her. We get regular visits with Abby and they are always lots of fun.

On our most recent visit, Abby was super-hyper. There was lots of giggles and jumping around. It is so good to see her happy.

Happy birthday Abby! We love you!

Good News: Love My Kids

Since my main website is down again, I will write my Good News post here. I do a weekly Good News post on my blog as a way of trying to stay positive.

This past week, we had our two children with autism come for a visit. It was nice in that our other three children were away at camp and so things were a bit quieter in the house. It is difficult having our children living in a different city but there are good things. We get to see them regularly and the overnight visits are going very well. Our relationship with them is much better now than it was when they lived with us. We can enjoy them without all of the daily stress that comes with autism.

We have a lot of fun with our children and that is good news.

Enjoying some Mac & Cheese together!

In This video, my daughter shares her opinion of my singing.

The Hardest Thing About Autism

I want to make it clear that what I'm about to say is my experience and is not meant to describe the experience of any other autism parent.

I understand that there is pressure from within the autism community to not see or speak of autism in a negative way. I hear those concerns, especially from those who are on the milder end of the spectrum.

Having said that, I have two children with autism, aged 13 and 15. Since they were diagnosed at an early age, autism has been a part of our life for a long time. We have had a lot of great times and a lot of difficult times.

Being scared of them running off, destroying property and hurting siblings has all been difficult. But there is something else that is harder for me.

It happens when I meet children the same age as my children and realize how far away they are from "normal." I know that I'm not even supposed to speak like that, but I don't know how else to describe it. These children have friends, get part-time jobs, prepare to get their driver's license, think about what they will do for a career and so on.

Our children are both nonverbal and I would love to be able to have a normal conversation with them. The autism affects their behaviours in such a way that they live in a group home and not with us. Other parents take for granted these simple things that they can enjoy. But for parents with children on the severe end of the spectrum, this is a daily grief.

I do not resent other children who are not affected by autism the way our children are. But it is a difficult reminder of hopes and dreams that ended with a diagnosis.

The Assumption of "Normal"

It is common that when you meet new people, that you ask each other about family. I tell people that I have five children and they respond by asking about ages. When they hear that I have two teenagers, they often respond with common understandings of what teenagers are like.

The truth is that my teenagers are not typical. They have autism, are nonverbal and live in a group home.

I have a moment in which I decide whether or not to explain our situation. I'm not embarrassed by my kid's autism. It is just sometimes a pain to go into the details and I hate the look of pity that I frequently get. Often I just nod my head and pretend that I know what teenagers are like.

People make the assumption that your children are "normal." By normal, I mean without disabilities. I'm using other people's definitions here, because I think my kids are pretty normal. There are times they seem more normal than our children without autism!

Why do I bring this up?

I'm not suggesting that people don't ask about families in case someone is offended. Nor am I suggesting that people shouldn't assume that children are typical. Most often they are going to be right.

I guess I'm just sharing this because it is something that I go through regularly. I never resent the person that asks. But there are days that it stirs up the feelings of missed opportunities. I'm telling you all this, not to change what you say, but to let you know that there are complex feelings that may go along with the answer.

Autism Can Include Good News

On my main website, I post a weekly Good News post. I started this a number of years ago during a dark time in my life. It was a way of looking past all the difficulties and finding something that I could be thankful for. It began as a daily discipline and eventually moved to a weekly post.

Unfortunately, my main website is currently down and so I can't post a Good News post there today. But I can do it here.

First, I would like to encourage other autism families to do this. It is good to find the good news in all of the other things that happen.

My autism-related Good News is that our children are home for a visit. They live in a group home and come for overnight visits twice a month. I'm thankful that they are in a great group home where they are cared for. I'm thankful that Logan and Abby can be in a group home together, as this has made a huge positive impact on them. I'm thankful that we get to see them regularly. I'm thankful that we can enjoy them and have a fantastic relationship with them.

There are many things about autism I don't like. But I still can find plenty about our situation that I can be thankful for. This is Good News.

The Other Side of Being an Autism Dad

I won't deny that there are difficulties that go along with being the parents of children with autism. We have had quite a few crisis moments over the years. The fact that both our children now live in a group home tells you that it is not easy.

Sometimes we only hear the hard stories. But I want to say that it is not all bad. We have some awfully fun times. When our children come for a visit, my heart beats a little faster, not out of panic but out of joy. The hugs they give me when they arrive melt away my stress. Little things like going for Tim Horton's run for tea and donuts are enjoyable activity when my kids are with me. Just being around them fills me with joy and puts a smile on my face.

I do not want to discount the challenges that families with autism face. But we should not be pitied. It is not 24/7 of terrible times. To be honest, there are many times when Logan and Abby are less stressful than our neurotypical children. So be aware that I am good with being an autism dad and autism not able to rob our family of joy.

The Guilt of Relief

For some families, it is possible to care for their children with autism at home with just some additional support. In other cases, the behaviours that go along with autism make such a situation impossible and there is a need to send the child to a group home.

The second scenario is our story. Twice.

Both our daughter and son ended up going into a group home, although not at the same time. Thankfully, they are now together in the same group home.

My purpose for this post is to share some insight into just one aspect of this difficult situation. There is an immediate sense of guilt when the decision is made and the child leaves the home for the first time. But there is another type of guilt that comes some time later. The family eventually feels some relief with the child out of the home.

Life becomes less hectic. The house becomes less damaged. The nights become less sleepless.

Although all of this is good, it brings its own type of guilt. Is a parent a bad person for feeling the relief of the child not being there? Whatever the answer to that question, the guilt will be there.

If you desire to support a family with autism and they have a child (or two) who leave for a group home, be aware of this dynamic. They will need you love and lack of judgment.

What the Church Needs to Know About Autism - Episode 3

What a Visit With Our Children With Autism Looks Like

We have two children with autism, both on the severe side, both considered nonverbal. They live in a group home together with two other children. We try to have them over for a visit every week.

This is what an average visit looks like.

• I show up at the group home. Abby is usually watching out the window beside the door and so she sees me right away. She grins and does wild hand gestures. Logan hugs me and says, "Hi Dad."
• We get into the car and Logan says to me, "Turn up music please." He doesn't seem to care what kind of music, but when I am driving it is classic rock.
• We arrive home and Logan and Abby run into the house. I am working on getting them to close the car doors first. It is coming along.
• They immediately head for the television. We have often watched DVDs but Abby has been frequently changing movies soon after they start and so we have switched to Netflix.
• We then sit down to a Veggie Tales marathon. Our three younger children claim they hate Veggies Tales, as they are too old for that now, but they are glued to the screen while Logan and Abby are here.
• There are frequent interceptions of mostly Abby (but sometimes Logan) as they try to find food in the kitchen. Neither of them ever feel full so we have to be careful and only do controlled snacks.
• Logan grabs his superhero books and reads them while watching TV.
• Abby starts grabbing toys, books, DVDs and anything else to create a display on top of Faith's bed.
• There is a lot of hugging, laughing and smiling.
• Both Logan and Abby tell me, "No thank you!" when I try to sing.
• Then they get picked up to go back to their group home. But not before we get a hug and kiss from our children.

That is what a typical visit looks like and it always gives us great joy.