When Did You Know?

I often get asked "when did you know your son has autism?". This isn't a tough question for me to answer but it requires an entire background story because his official label/diagnosis wasn't received until he was 5 years old. He is now 7.
Gabriel developed normally and on track. He walked at 14 months. Though later than many of my friend's children, he was still within the realm of normal. It was right before his brother was born at 20 months that I started to notice differences between him and other children the same age.
I remember sitting at the computer with newborn Alex in my arms and shaking bcause I kept clicking on autism as an answer to Gabriel's behavior. Gabriel pushed the kitchen chairs and table over repeatedly. He didn't play with toys very long and needed constant attention. It seemed like he could cut off his head and wouldn't notice any pain.
Other people told me he was just a boy and to wait it out. He would catch up. This was especially comforting from other parents who have children with autism. Surely they must know. I called Andrew to the computer that night and cried. He cried but reassured me that Gabriel couldn't have autism. It didn't quite fit.
Remember, my background is in child psychology so I know enough to scare the crap out of myself but not enough to diagnose my children. I continued to have that nagging feeling so I contacted the local county program to evaluate him. I also contacted two therapists to evaluate him.
The final diagnosis was a speech delay and SPD - sensory processing disorder. Gabriel had just been diagnosed with a heart issue a few months prior which made everything seem overwhelming but it seemed MUCH better than an autism diagnosis. I would take it and run with it.
I took Gabriel to speech and occupational therapy several times a week in Miami. Therapists also came to the house and everyone reassured me that they didn't see any signs of autism. He would catch up and be a typical, normally developing boy.
When Gabriel was 3, we moved to Iowa and he entered the preschool program there. When he was 5, I took Gabriel to our pediatrician for his wellness check-up. He took his time observing Gabriel. He was patient with me. He was patient with Gabriel. I was oblivious. The pediatrician looked at me with concerned eyes and said, "we need to refer him for an evaluation."
What? What kind of evaluation? I broke down and sobbed. Here it was - exactly what I had feared for the last three years. But everyone, even professionals, had reassured me that I was wrong. Gabriel didn't have autism. That scary A word.
I called his occupational therapist and told her we would be making an appointment and asked her if she thought he had autism. She told me that it was possible. I sobbed.
The best advice she gave me - even with the label, he is the same boy. The same child who can get help from school and professionals if he gets that label.
It was at that moment that I KNEW he had autism. In my heart and in my gut, I knew we would hear it. I just prayed it wasn't so.
It's been two years since we heard "your son has PDD-NOS. It's on the autistic spectrum." I feel like I'm still grieving. Those six letters (funny how both words have 6 letters - PDDNOS and autism) have changed everything in my world. In our family. In our daily interactions. It's a cloud that follows us everywhere and it won't leave. I hope that when I think about this again in two years, it won't be as painful.

100 days of school - Alex and Gabriel

Alexander brought home an assignment to glue 100 things to a piece of paper. I love numbers so this was a fun challenge for me. I pulled out my former scrapbooking decorations and we counted and glued like crazy! If it was up to me, I would have sorted by color or type but Alex is our pokey puppy so I didn't even bring up that suggestion to him.
Knowing Alex had a 100 day celebration at school coming up, I prepared a card for him to make for his teacher. Gabriel didn't want to be left out so they both made cards for their teachers. They worked very hard on them and were so proud to take them to school.
Gabriel ended up making a fun hat for the 100th day of school and came home with a colorful accessory. He was disappointed he didn't get to make a 101 day hat too!

Who has heard of Convergence Insufficiency?

On December 23, 2011, Gabriel went to a developmental optometrist. He had an extrensive exam done. It was interested to watch him during the tests especially tracking while he was reading numbers. It's an expensive test, costing $350 out of pocket. We will be lucky if $100 of that is covered by insurance.
Andrew and I went back in January to discuss the results with the dr. We found out that Gabriel has three more conditions. He has: convergence insufficiency, ocular motor dysfunction, and visual perceptual dsyfunction.
It is shocking how much is "wrong" with Gabriel. As if a heart condition and autism isn't enough, he deals with severe sensory processing disorder and hypotonia. Yet, he has such a strong self-esteeem and sweet personality. He rarely complains about these difficult conditions.
The dr recommended 6 months of visual therapy which will cost close to $5000, involve a 45 minute drive to and from the office, and daily activities at home. It's no wonder special needs children don't participate in extra cirricular activities. How can the average family afford extra activities or find the time for them when they face things like this?
I need to ask for more academic and testing accomodations for him at school. I'm sure they will be thrilled to add these to his long list of accomodations needed for him to succeed. (please note the sarcasm)

Andrew's Big 4-0

Ack! How can Andrew be 40? And how can the big 4-0 be right around the corner for me?? We had a casual family celebration for Andrew this year.
Lane and I took an entire day to complete shopping and wrapping for his birthday. We made this "40 sucks for him" (an idea from Pinterest):

Lane was so proud that she gave the gifts to Andrew the night prior to his birthday. It was adorable to see her ask him to open his gifts. Gabriel tends to have a tough time with birthdays but he did well and even wished his dad a happy birthday.
Happy Birthday Andrew - may your 40th year be the best yet!

Valentine's Day 2012

Holidays are a lot of fun with children ages 2, 5, and 7. It can also be a big undertaking for us. We made 11 gifts for teachers and therapists this year. I wanted to make extravagent gifts but reality set in as well as a budget so we found something less time consuming.
I gave the kids an empty paper towel roll and shaped it into a heart. Then I gave them purple and red paint and some paper.

They enjoyed stamping paint hearts on paper. Later, with some ribbon and my hot glue gun, I created a fun presentation that included a large candy bar. I added Valentine's Day tissues and delivered the gifts to the teachers.

10 Things You Can do to Help a Family Affected by Autism

http://www.psychologytoday.com/blog/autism-in-real-life/201101/10-things-you-can-do-help-family-affected-autism

10 Things You Can do to Help a Family Affected by Autism

Helping a family whose child has autism is a precious gift.

Published on January 21, 2011 by Kymberly Grosso in Autism in Real Life

When a child is first diagnosed with autism, parents often scramble to find appropriate autism services, doctors, schools and therapists. What we don't always anticipate is that relationships with friends, family and neighbors often change. Some will stand by our side, doing what they can to help and embrace our child no matter the diagnosis. However, some people will either sit quietly on the sidelines or abandon the relationship altogether.

So what happens when you find out that your friend, family member or neighbor has a child who has been diagnosed with autism? How can you help your friend? How can you help their child? There are many ways you can assist a friend from talking to offering a playdate. Here are 10 things you can do to help a family whose child has been diagnosed with autism.

1. Being There
It sounds easy enough, but parents of children with autism need someone to listen and ask how they are doing. As a friend, you may not understand all the autism jargon, but moms and dads who have kids with autism often want to talk about their kids.

What can happen, however, is that the diagnosis of autism pushes us and our kids into isolation. It isn't like we want to be isolated, but we are sometimes so busy with autism related activities and therapy, it does not leave much time for anything else. Offering to come over for a cup of coffee or to get together just to talk can be one of the best ways to help your friend get out of his/her autism bubble and combat the isolation.

2. Discussing Autism
To talk about autism or to not to talk about autism?...That is the question. The answer is "It depends." Most parents who have kids on the spectrum are more than willing to talk about autism. But there are parents who do not want to disclose the diagnosis, talk about autism at all or how it affects their child. Some parents may be in denial about the diagnosis and will not even want to say the "A" word let alone discuss the topic.

So if you are a friend, what do you do? Let your friend bring up the topic of autism, and do ask how the child is doing. Even if a friend does not use the "A" word, he/she will appreciate you asking how their child is doing in general... without ever discussing autism. If your friend is open about the diagnosis, showing interest in their child and the topic of autism is certainly appropriate. Because we never take progress for granted, parents who have kids with special needs are proud of their children's smallest accomplishments. To know that friends care about our kids makes sharing these times all the more special.

3. What Does a Child With Autism Look Like?
Seems like a strange question. But I know that there have been times when a person has met my son and then makes a comment such as, "He doesn't seem like he has autism." or "He doesn't look like he has autism." The interesting thing is that there is no "look" to autism. Yes, some of our kids may have similar behavioral or social characteristics, but they are all very different. So this is why if someone tells me they have experience in autism, that doesn't mean they will know or understand my child.

If you do know, watch or teach another child with autism, it is best not to compare what you know to the child you are meeting. Also, I would refrain from telling your friend about how you think autism should "look". Being open to learning the hallmarks of autism is important, but learning about the individuality of each child who has autism is the best approach.

Sometimes it is a difficult concept to explain to others how autism is different in each child. But as a parent, when your child has 10 friends with Aspergers, you can see easily how they are all very unique with their own talents and interests.

4. Prognosis
If you had asked me when Tyler was diagnosed at age 2 where he would be in 12 years, I could not have told you or predicted the outcome...nor could the doctors. Many times people will ask us, "What the prognosis?", "Will he grow out of the autism?" or "Will he go to college?" The truth for many of us is that we don't know our child's prognosis, and the topic can be a sensitive subject. Because we don't know what will happen, the future can be a scary, unknown.

Unlike parents of typical children, who plan for college or vocational schooling, we often do not know where our kids will be academically, socially or behaviorally when they become young adults. Can we plan for the future? Yes, but we go into it accepting the unknown variables as we plan. Our child's future may or may not include college or further schooling. We often don't know whether our child will ever be independent enough to live on their own. We hope for independence, but the reality for the future may include living at a group home or our child may need to live with us for the rest of our lives.

Many of us worry about what would happen to our child if something happened to us. This too, is difficult. So, if your friend brings up the topic of prognosis, then you should discuss it. But just be aware that some parents will not want to talk about this issue.

5. Information
Lately there has been a lot of autism awareness stories in the news. As a parent of a child with autism, I do appreciate friends and family sending me information they read. If you have a friend who is open about discussing autism, sending something you read is a fine way to show you care. Just because we have a child with autism does not mean we necessarily know every latest thing that is going on in the autism world.

The only caveat I would mention in this area is that parents don't always agree about autism treatments or causes. As a result, parents sometimes react strongly to studies, articles, etc.. So my advise would be to go easy. If a friend seems receptive to new information, feel free to send it but never push too hard.

6. Playdates with Friends
I can remember when my son was first diagnosed, and my friends also had children Tyler's age. What my son really needed was to be around other typical children. However, some friends acted like somehow autism was contagious and did not want their child playing with mine. I can remember a good friend's husband expressing his displeasure with my son and his autism. After that, I never went out of my way to get our kids together, because I felt her husband didn't want my son around her children. It was a rude awakening about how some people accept our kids and some people clearly do not.

So what can you do? If you have a friend who has a child with autism, invite her and her kids over for play time. Will it be typical playdate? Maybe yes...maybe no depending on the children. Even if the playdate is a little out of the ordinary, it will offer the kids with autism an opportunity to learn typical social behaviors/skills from other children. For the typical kids, the playdate may provide a lesson in acceptance and tolerance of people who are different from them. Acceptance is a lesson that is learned best by doing, so your children will benefit as well. It can be of great experience for both families.

7. Playdates with Neighbors
When it comes to autism, being a good neighbor means more than keeping your yard clean and sharing a cup of sugar. If you have a child the same age as your neighbor's, invite them over for playtime. You may want to invite the parent and the child over for the playdate so you can learn how the autism affects individual child and how to help the kids play together.

It is important to note that many children with autism have difficulty creating and maintaining friendships, engaging in conversation and/or working within a group of children. This means that you may need to help facilitate the friendship and communication between your child and the child with autism. Also, many of our kids do better within a structured environment. Creating a well organized playdate with specific activities may help both kids enjoy their time together.
with Respite
Whether the child is a toddler, adolescent or adult with autism, respite is often a complicated issue for parents. Many parents who have children with disabilities are overwhelmed with the day to day responsibilities. Some children on the spectrum do not sleep well during the night and that further adds to the exhaustion.

However, when you have a child with special needs; it can be difficult to find someone you trust to watch your child. For example, I could easily find a teen babysitter in our neighborhood to watch my 4 years old, neurotypical daughter. But when my son with autism was her age, there was no way an untrained teenager would have been able to babysit him. My son only spoke a few words at the time and had many behavioral issues, so I only could trust my parents or another adult to watch him.

So what does this mean if you are a friend or family member? An offer to provide brief respite from a trusted friend or family member who knows how to appropriately interact with the child with autism would be great. Whether it be one hour or a night, any offer would be a gift for a friend in need. It seems like a simple favor, but it can mean everything to an overwhelmed parent to have a few hours to go grocery shopping or to just spend some alone time with their spouse.

9. Don't Judge
Whether it is a disapproving stare in a grocery store or comments from a family member about how we need to "better discipline our child", most parents who have a child with autism been subject to judgment from others. Considering that we live our life in a fishbowl, with countless therapists in our home and never ending doctors appointments, we often grow weary of "advice" from those who do not have a child with autism. No matter how much you think your criticism is constructive, be aware that expressing it may easily break off or damage your relationship.

Until you walk a mile in our shoes, you will never know what is like to have a child with autism. Most of us instinctively know that we should not judge others, but it can happen easily. And once it happens, it may be hard to reverse the damage.

10. Confidentiality
Some parents, like me, are very open about talking about their children and the diagnosis. But some parents may not want to discuss autism except perhaps with a close friend or family member. And on the far end of the acceptance scale, some parents may be in denial about the diagnosis and won't discuss the issue with anyone.

But regardless of how much we discuss our kids or autism, we do expect confidentiality. Just because we open up to a friend does not mean we want our friends or family telling others about our children or any issues we are having at the moment. Confidentiality is especially important to a parent who has chosen not to disclose their child's diagnosis to others . While it seems like common sense not to gossip about other people's children, it is worth mentioning that if we tell you something, please keep it in confidence unless you have the permission of the parent to share this information with others.

The Bottom Line
In your lifetime, you will probably know more people and families affected by autism. You can choose be part of the solution by helping support a friend, family member or neighbor. Take the time to learn not just about autism, but the individual child. Make the decision to accept children with disabilities and teach your children how they can help children with autism by being a friend too.

If there is one thing I learned about friendship after my son was diagnosed with autism, it is that it can be very fragile. Being a friend during good times is easy. Yet it is during the difficult times that we learn who our real friends are. I am forever grateful to those friends and family members who supported our family after the diagnosis. They made a choice to accept my son for who he is and help us in any way they could. Making the choice to support a family affected by autism is one of the greatest gifts you can give. It is also very likely that your act of kindness may turn out to be one of the greatest gifts you receive back as well.

"Our most difficult task as a friend is to offer understanding when we don't understand." ~Robert Brault


Copyright Kymberly Grosso

Oh Poo

I didn't forget the "h" as in Pooh, I mean POO. As in crap, poop, doodoo, #2... you get the picture. I love diarrhea stories. Nothing makes me laugh harder than a funny diarrhea story but I am sick of dealing with poo in my home.
If it smells bad in my home, I have no idea who it came from or where it is. How gross is that? With two aging dogs, I never know if they will lose their ability to make it outside so that's a constant fear of mine. We have to walk them a couple times a day since we don't have a back yard at our home. We are constantly picking up poo from two LARGE dogs. Yuck!
Lane refuses to poo on the potty so it could easily be in her diaper. If it is Lane, it could very well be smeared all over the table, chair, in her hair, on her face, on her clothing, and any crack and crevice she can get it in. Doesn't that make her less charming? We can't seem to get her to stop touching it when she poos in her diaper.
Gabriel has issues with the bathroom. I think it's related to his sensory and poor fine motor skills. He can't wipe well and tends to get poo all over the toilet seat. The school nurse called earlier this week to ask if I could go to the school to calm Gabriel down.
Apparently he yelled for someone to wipe his tush and then got upset when no one could do it. For some reason, the nurse was told that he has pooped his pants. I usually have the ability to go to the school quickly but Lane was at a pediatrician's appointment so Gabriel had to wait.
The nurse called again when I was walking to the car. Gabriel changed himself and it was an underwear issue. He was able to change himself and return to class.
Before I sound like I'm blasting the nurse or teachers, I need to clarify something I found out. They were told they couldn't help him becaus eit isn't on his IEP. Prior to those instructions, they were helping him without a problem.
Now Gabriel has decided that he won't use the restroom at school because he doesn't want to go to the nurses office. We've explained that he won't have to see the nurse every time he uses the restroom but he's convinced that this will solved his problem. My poor son is having so many issues with school that could easily be resolved and I'm frustrated for him.
Another IEP meeting will be called in order to resolve this issue and discuss his gluten intolerance. I wasn't prepared for these battles when we moved here. I'll continue to fight for our son and his rights though.