New Prevalence Rates

Today the new prevalence rates for autism were released in an article by the CDC. Now, 1 in 68 children are on the spectrum. Advocacy, understanding, and acceptance need to increase as well. Keep educating yourself and others about autism.

Dan Marino Talks About Early Intervention

Former Miami Dolphin Quarterback, Dan Marino, talks in a 2005 interview about his son, Micheal's journey on the autism spectrum. Micheal and his family attribute early intervention to Micheal's successful progress. Research continues to conclude that early intervention DOES help children on the spectrum progress toward developmental goals.

http://youtu.be/el1kQ-3Dln4

Speaking from experience, the fear of the unknown can prevent many people from seeking assessment and treatment for their children on the autism spectrum. What will this diagnosis mean for my child and family? Will my child "catch up" to his/her peers? What can I do to help them? What could have contributed to their autism? Will my child be able to lead a "normal" adult life? These questions and many more go through parents' minds and may delay the initiation of assessment or acceptance of an ASD diagnosis.

If you believe your child or a child you know may be on the spectrum, please seek intervention as early as possible. The benefit of early intervention far exceeds the uncertainty of the future. 

"See, the Sovereign Lord comes with power, and he rules with a mighty arm. See, his reward is with him, and his recompense accompanies him. He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young. (Isaiah 40:10, 11 NIV)"

I have only recently grasped the extent of God's sovereignty. God knows all, has GREAT plans and the mighty power to make them happen, and is in charge of EVERYTHING. Isaiah 40:11 promises us that God will lead us as parents. However, we must seek God first and pray for wisdom of His desire and the understanding of His will for our children. 

When the uncertain future for your child scares you, take comfort in God's sovereignty. Pray for guidance. Study His word. Seek support from others. Email me! I will pray for you and with you. Watch and be amazed at how God will use the experience to change your heart and bring glory to Him.

We Went on a Walk

Whenever we have an upcoming event or fun activity I always debate about when and how to tell Bradley. He still has difficulty understanding the concept of time, so if I tell him too early Bradley is disappointed that we aren't going to the party or event that very minute. If I tell him too late, I miss the opportunity to explain to Bradley where we are going, what we are doing, and who we'll be with. I have found that some planning and discussion of the event helps Bradley feel more comfortable when we arrive at where ever we are going and have a better time during the experience.

About three weeks before the Houston "Walk Now for Autism Speaks" I decided to officially join my friend, Lori's fundraising team, "Amazing Him: Team Erik." Lori invited me to join the team earlier, but the hustle and bustle of the beginning of the school semester had my attention. Once we were team members and fundraisers I was overjoyed with the financial and emotional support friends and family gave. 

I started telling Bradley about the walk about a week before the event date. I told him we'd be "going on a walk for autism with a bunch of people who are special like you" and that he'd make a new friend named Erik. I also explained to Bradley that there would be many people at the walk and that some of them liked the same things he did. Bradley was growing increasingly excited each day that we talked about it, but was most excited to meet his new friend Erik.

The day of the walk finally arrived and the boys and I headed for Reliant Stadium with our Red Rider Wagon in tow. When we arrived I unloaded the wagon and then loaded Max and our bags of supplies and snacks back into the wagon. We found our group and after a short transitional adjustment for Bradley we settled in. Amazing Him: Team Erik was comprised of loving, approachable, and sweet adults and kids who automatically welcomed Bradley upon our arrival. However, Bradley wasn't real sure about what was going on at first and was somewhat negative about changing his shirt and putting on the team shirt that everyone was wearing. 

It is hard for me to understand how Bradley can go from being super excited and talking about this walk for a week, to not wanting to be there and going home instead. This happens so frequently when we do something new. My guess is that Bradley has a specific expectation of what he thinks is going to happen and when reality doesn't equate to that expectation, he panics. While I don't think he means to be rude, Bradley's attitude quickly shifts and he says, "No thanks... I want to go home... I don't want to do this." Needless to say, this is embarrassing for me and then we have to spend several minutes readjusting Bradley's attitude and getting him focused on the current event or task.

Once Bradley was on track to have fun then he and Erik were peas and carrots. Erik was super sweet to Bradley and they played well together.

 

Before we knew it we were about to move forward to the stage for the opening ceremonies. Lori led us in a beautiful group prayer that really resonated with me. In her prayer she thanked God for choosing her and her husband to be Erik's parents. I feel the same way with Bradley. It is an amazing blessing to be Bradley's Mom (and Max's mom too).

Walking up to the starting line we were about 50 yards away and listening to the emcee announce sponsors, donors, leading fundraisers, and special thank yous. Happy and relaxed Bradley and Max soon turned in to impatient, cranky, and frustrated little boys. The announcements lasted at least 20 minutes and the boys only became hotter, sweatier, and increasingly more annoyed. Bradley wanted to start walking, but we were surrounded by hundreds of people with very little wiggle room. Max was miserable. He was hot, didn't want to sit in the wagon, didn't want to be held, and didn't want to be told what to do. Bradley kept urging us to walk, "Come on Mom. Let's go. Move. Let's go." But it wasn't time to go and no matter how patiently I explained this to Bradley he just didn't understand.

After what felt like an eternity of waiting, the official start began and we were all excited. However, we weren't really moving. We literally inched our way up to the start line a mere one step at a time. The starting archway was narrow and the crowd was wide. It was wonderful to have such an amazing turnout for the event, but getting everyone through the narrow arch was a headache. At this point Max was screaming, literally screaming in my face. Max was screaming at the top of his lungs. He did NOT want to be held. Max wanted to run around the crowd of hundreds. Sorry Max- not an option. Max screamed in protest. I whispered into Max's ear, "It's okay Max. Mama's here. We're moving now. Look! We're going under some balloons soon." Nope- didn't work. Max continued to scream.

As we inched our way closer I tried to stay positive.I was sweating my face off. Sweet Erik noticed I was sweating and demonstrated how to cool myself off by quickly pulling at the front of my shirt. There was no cooling off for me. It was hot and the stress of Max screaming in my ear, Bradley's impatience, hundreds of people around me, the fear of losing track of one of my kids, people pushing by us, inching our way forward, being cut off by other impatient walkers, and the Texas sun were too much for me to keep my composure. On the verge of tears I began to complain. "Don't these organizers realize that autistic kids have a hard time waiting? What are they thinking? I am absolutely miserable! Uggh! This is not fun." I said these things out loud. Strangers heard and looked at me with pity.

We finally made our way through the inflatable, blue archway and I felt defeated. I felt horrible that I was complaining during this time of empowerment for so many. I continued to fight back tears but felt so alone. How strange... I felt alone in a sea of hundreds of other people. I didn't see anyone else struggling like me. I saw tons of teams helping with the kids. I saw fathers there with their children. My husband was bow hunting for deer. Someone asked where my brother was. He was bow hunting too. I felt alone. I felt incredibly frustrated. I wanted to cry.

We caught up with the rest of our team, but I couldn't stop to wait for the remainder of the team members. Bradley and Max were finally happy that we were moving and I didn't want to stop. We had about 2 miles to walk around the stadium parking lot and my arms were already shaking from caring 30 pound Max and pulling 50 pound Bradley in the wagon uphill. Thankfully several of our team members offered to help me with the boys and I finally accepted help from Lori's brother, Adrian. He is a childhood friend of my brother, so I've known Adrian for 20 years or more. Adrian is young and athletic so I didn't feel too guilty about him pulling Bradley in the wagon. I immediately felt relief. I still regretted my bad attitude earlier and hoped that no one in our team had noticed. Now I was enjoying the walk and enjoying my conversation with Adrian.

Throughout the course my stress went away and my heart filled with joy. Bradley was having a blast! He was smiling at, waving to, and hugging strangers along the course. Volunteers were cheering for Bradley as we passed and complimenting his Angry Birds rain boots. I really enjoyed visiting with Adrian and Lori and I shared our experiences with raising the sons we love on the autism spectrum. We talked about the tough times and the progress our kids have made. Somewhere along the way Max fell asleep in my arms and we moved him to the wagon and Bradley marched along side us.

As we approached the end of the course Bradley recognized that we were almost finished with the walk. He became very excited when he saw the pedestrian bridge we crossed at the beginning of the course. Bradley's excitement turned in to a jog toward the bridge, so I ran after him since Adrian was comfortable pulling sleeping Max in the wagon. The closer we got to the finish line the happier Bradley became. "Look Mom! We're almost there!" Bradley cheered as we walked back through the blue arch, "Hooray! We did it! Hooray!" I was so happy and proud of Bradley's fantastic attitude and joy.

Bradley wanted to play on one of the inflatable slides in the parking lot so after we found Adrian we wheeled sleeping Max toward Bradley's slide of choice and stood in line. Again- autistic kids and lines don't exactly mesh at times. Many of the kids waiting didn't want to wait but their parents stood strong and made them. I was very proud of Bradley's willingness to wait his turn. Bradley's turn was up next and it began to rain. After sweating for over an hour, the cool rain was a welcomed blessing. Kids crawled out of the netted slide and left with their parents. I asked if we could still let Bradley jump and play in the inflatable playground and the volunteers agreed. Bradley jumped and slid and had fun while the rain came down. Surprisingly, Max continued to sleep through the rain.

We could see more rain clouds approaching and hurried back to our team's spot to gather our things. Thanks to the help of Lori and her husband we were able to gather up our many bags very quickly and head toward the car. Adrian helped with the wagon again and we found my vehicle among the sea of cars.

Before the end of the walk I realized that the walk experience was incredibly significant to me because it was so congruent with how my life has been with Bradley's autism spectrum diagnosis. In the beginning (before diagnosis) I was frustrated with the lack of progress Bradley was making in his speech. People were telling me something was wrong but I wasn't handling it well. I felt heavy burdened by this uncertainty. I'm sure I complained quite a bit. I was anxious and scared of losing my child. I lacked confidence in his future... our future. I was rude to diagnosticians and service providers who were merely trying to help. I resisted diagnosis because I feared a label. I envied other families who looked like they had it together. I felt lost.

As we walked through the archway of diagnosis I began to feel some relief, but I was still panicked. We had such a long journey to go and I was already physically and emotionally exhausted. How am I going to do this alone? People are offering to help, but I don't know them. I can't expect them to carry my burden. Gosh this is so hard! Why don't I have the support I need? Well, maybe I do have support. Yes- I do have people wanting to help me. Maybe not who I expected, but they genuinely want to help. Yes! Thank you for your help. (Don't cry). Thank you for your help! You promise to help me through all of this, right? 'Til the end? Please?

Somewhere in the midst of the walk of treatment I am gaining confidence. I can do this. I can be the mom Bradley needs. I can be there for Bradley AND for Max. I can get us through this. I am not alone. There are people here with me and for me. They "get" me. They understand Bradley. They love Bradley. I love Bradley even more. Bradley is happy and Max is relaxed. I have friends who understand. I have friends who understand me even when I don't talk. They love me for who I am and know that my focus HAS to be on Bradley if I'm going to be the mother God desires me to be for Bradley and Max.

As we approach the finish line Bradley is happy. Max is relaxed. My friends and supporters are behind me. My burdens are distant. My God is providing me with the love, peace, and relief that I need. Bradley is overjoyed and smiling. Bradley eagerly runs toward our future with his hand in mine. I love Bradley even more.

For the rest of that day Bradley told everyone, and I mean EVERYONE, we met that he "went on a walk today." He shared his experience with strangers at Chick-Fil-A, police officers we met, and our family members later that day and weekend. Bradley loved our walk and asked if we could come back again. I promised Bradley we would and I can't wait to keep that promise next year and walk with Max and Bradley again.

Early Signs of a Potential Learning Disability

Nearly every mother may be hesitant to admit that their child might have a learning disability. It is difficult for parents to be objective with their children. Family, friends, child care providers, and teachers may bring concerns to parents before the parent recognizes them. Speaking from experience, the earlier you can have your child assessed and treated for their identified challenges, the sooner those challenges can begin to be overcome. Check out this link for 5 signs your child might have a learning disability.

http://moms.popsugar.com/Signs-Your-Child-Might-Have-Learning-Disability-30981340?utm_source=com_digest&utm_campaign=com_digest_v2&utm_medium=email&utm_content=article_1

My First ARD

Bradley's 3 year ARD (Admission Review & Dismissal- aka super, big important meeting about your child) was nearly two hours of identified challenges I was aware of, assessment review, identified challenges I disagreed with, diagnostic criteria, identified challenges I had no idea about, paperwork with acronyms I didn't understand, identified challenges that seemed silly to worry about, Momma Bear protection, identified challenges that broke my heart to hear, tears sliding down my face, and a few more identified challenges- just in case the first hour's worth of challenges wasn't enough. Am I overreacting? Was the ARD really that bad? My clinician mind says, "It probably wasn't that bad."  My Mommy heart says "It was ABSOLUTELY that bad!"

I recently attended a training conference on "High Functioning Autism" and the presenter, Timothy Kowalski, MA, CCC-SLP, who specializes in treating individuals on the ASD spectrum described a common reaction parents have when given the news of their child's ASD diagnosis.  I'm paraphrasing him, but he said something to the effect of, "The moment parents hear the clinician tell them their child has autism, they don't hear anything else discussed in that meeting. At that point the parent is freaking out thinking that their child is 'Rain Man'."  The other parents in the training and I chuckled and nodded our heads because we remembered that moment. Tim Kowalski was a fantastic presenter and offered invaluable feedback. Needless to say, I bought all 4 of his books that day!

Check out Mr. Tim's website: http://www.socialpragmatics.com/

Clinicians- The assessment team can be incredibly professional, informative, thorough, empathetic, and kind, but the parent (even the toughest Momma Bears) cannot predict how they will feel and/or react when the diagnosis is said aloud in the ARD.  It's a shock, a sting that only parents know. See my post about "Stages of Diagnosis" for more commentary and information about common reactions parents may experience.  My clinician friend, Monica, shared a great comment on a previous post, "We (I) make sure to review two strengths for every weakness I state. I make sure to tell the parent that their child is still the same child but just needs supports and interventions. I make sure to tell them that future potential cannot be determined. We also tell them that this does not mean their child will not learn. We have kleenex boxes ready and we offer them breaks."  

Clinicians- this is what I needed as a parent in my first ARD

1. Positives with the negatives.  The parents know the child better than you.  If you present only negatives, you may discourage the parent more than you realize. I understand the importance of being honest and realistic with parents about diagnoses and goals, but let the parents know that their child is awesome too.

2. Reminders that although the future is uncertain, it is certainly not bleak with a great treatment team like yourselves in our child's corner. Tell the parent that they can help their child too and promise to teach them ways they can help (then do that).

3. Kleenexes and bathroom breaks for goodness sake!

4. An explanation that diagnosis means treatment. Tell the parents that this diagnosis is not necessarily a life time diagnosis and it isn't something that will inhibit their child's development. Instead- the diagnosis will allow treatment, potentially state funding for assistance with this treatment, reassessment of the diagnosis, and a plan for the child's future.

5. Make certain that the parent understands their child's diagnosis/diagnoses. Help them understand the range of severity of symptoms. Explain the autism spectrum to them in lay terms. "If you know one child with autism, you know one child with autism." I love that quotation. Autism is such an individualized disorder that parent needs to be told in more professional terms that their child is NOT Rain Man.

Parents- this is what you need to know from the clinical standpoint
1. Your child was evaluated because someone cares- You, the school, the teachers, etc. The evaluation is done to help the child.  In order for your child to receive help- they will need documented proof they need help (aka a diagnosis).

2. The assessment team does not know your child like you do. Your child probably didn't exhibit all of their strengths during the assessment process. A stranger is asking them to do strange things after all... Please don't feel defeated when hearing the identified challenges. Your child is awesome! You know that and you see it- a diagnosis does not take away from the great things you know about and see everyday

3. Parents have the right to disagree. You know your child best. You care about your child the most. But I urge you to pause before making any hasty decisions about denying help or refusing to sign anything. ARDs are intense. You will need some time to think things over. Take notes during the ARD. Ask questions during the ARD. Express your opinion and concerns during the ARD. If you aren't comfortable with the recommendations and don't know what to do about it, ask for some time to think about it.  Better yet, try to get information before the ARD so you can prepare yourself for the emotions you'll be feeling and the questions/concerns you'll have.

4. Request a pre-ARD meeting with whoever you think you'll need more information from. You were likely a part of the assessment process. If the LSSP interviewed you, ask to have a brief meeting addressing his/her clinical findings. Even if they have not completed their report, they should be willing to explain their findings and diagnoses.  

5. Most importantly- Seek comfort, confidence, and peace from God. Know that He is in charge. God is sovereign and has a perfect plan for all of His children (including you and your family). Feeling anxious or worried? Check out Philippians 4:6-7 and 1 Peter 5:6-7. These are my favorite scriptures about worry and what God desires us to do about our stress and worry. Pray for your child- that God will let their strengths shine and give them courage and confidence to work on the challenges they may have. Pray for yourself and your spouse/partner parent- that God will help you be the parent He desires you to be for your child and that your child needs you to be. Pray for your assessment and treatment team- that they may recognize your child's true needs and have the wisdom and patience to implement treatment to the best of their ability. Pray for your child's teachers- that they will have the love and patience to help your child achieve their learning goals and grow in their abilities. And pray for those who don't understand your child and other children with autism- that God will fill you with His love and wisdom to teach others to be accepting and understanding of differences in your child and other children.

Emotional Stages of Diagnosis

Hindsight is 20/20. Every adult knows this. I definitely realize today that I have had multiple responses and reactions to Bradley's PDD-NOS diagnosis.  The passage of time, personal reflection, and consultation with Bradley's service providers has led me to realize that many parents will go through a cycle of emotions when their special needs child receives their diagnosis.  When talking with others I've compared my emotional experience to the stages of grief.  While I'm going to make a comparison between the two, I want to emphasize that having a child with special needs is not something I want to grieve. I hope after reading my rationale you feel the same.

As an instructor of psychology, I teach my students about The 5 Stages of Grief. This model, also called "The Grief Cycle," was developed by Swiss Psychiatrist, Elisabeth Kubler-Ross.  Dr. Kubler-Ross emphasized that the grief cycle is a model or framework. She noted that not every individual will experience all 5 stages the same, in the same order, or with the same intensity. Kubler-Ross also explained that some grieving individuals may revisit the same stage more than once or may not experience one or more stages at all.  The purpose of her model was to help grieving individuals learn that healing DOES take time and that it is a normal, human reaction to respond differently to different types of grief.  Dr. Kubler-Ross emphasized that grieving is an individual journey that will help the individual move closer toward acceptance and hopefully learn to effectively cope with their grief (Kubler-Ross Foundation, 2009).

For more information about Dr. Kubler-Ross' research and Grief Cycle model check out: http://www.ekrfoundation.org/five-stages-of-grief/

Bradley was diagnosed with PDD-NOS at age 3, and within that first year post-diagnosis I went through many stages that are similar to Kubler-Ross' Grief Cycle. Below I have explained the basic concept of Kubler-Ross' stages and how I saw it manifest in my life.

Denial	"Denial is a conscious or unconscious refusal to accept facts, information, reality, etc., relating to the situation concerned. It’s a defense mechanism and perfectly natural." Prior to his PDD-NOS diagnosis I knew that Bradley had a "speech delay," but I was confident he did not have autism. I remember a few family members asking if Bradley was autistic and my swift response was "No Way!" Even during the assessment and eventually diagnostic process, I thought that the assessment team was hasty in their diagnosis. I knew Bradley had a speech delay and I was confident once he overcame that he would be just like any other kid.
Anger	"Anger can manifest in different ways. People dealing with emotional upset can be angry with themselves, and/or with others, especially those close to them. Knowing this helps keep detached and non-judgmental when experiencing the anger of someone who is very upset."  My anger was secretive anger I had toward other parents. I internally fumed when I observed the lack of effort and bad attitudes of a few parents of healthy, high functioning, amazing, "non-autistic" kids. I'd see these parents in public- ignoring their child, belittling their child, pressuring them to be better... and I wanted to scream, "Be thankful for your kid and pay attention to them! Love them! You have it easy. Quit complaining!!!"  Some of these parents were strangers and some I knew very well. It frustrated me greatly that (In my mind) they tried so little yet had smart, social, talkative, amazing children. I thought I was working 10x as hard as them and just didn't think it was fair. I was also angry and rude with Bradley's assessment team. Many times I either directly or indirectly let them know that they were wrong about Bradley and they didn't know him well enough to diagnose him with PDD-NOS. I thought, "How dare they define my child by a diagnosis!!! They just met him!"  I feel horrible about being so rude and have apologized to the team members I was rude to. What I didn't realize is that we both wanted the same things- for Bradley to be successful in school and in life. Parents- keep in mind that a diagnosis leads to treatment. It leads to help and understanding.
Bargaining	"Traditionally the bargaining stage for people involves attempting to bargain with God. When people bargain, they seek to negotiate a compromise." I bargained with God many times. "God- I will spend more time with Bradley. I will be a better mother. I will try harder. PLEASE take away his autism." This is a prayer I said MANY times. I'll blog about the role God has had in my acceptance of Bradley's diagnosis and what it took for me to understand His Plan.
Depression	"It’s natural to feel sadness and regret, fear, uncertainty, etc. It shows that the person has at least begun to accept the reality." I felt incredibly depressed and helpless after the first ARD. I walked away feeling broken after an hour and a half of listening to people tell me about what my child couldn't do, what he may never be able to do, and how much work it would take to integrate Bradley into mainstream classroom education. The thought that Bradley may never meet those dreams I had for him (playing football, academic events, going to college) saddened me tremendously.
Acceptance	Acceptance means coming to terms with the diagnosis, believing the diagnosis, and being "okay" with it.  Thanks to research, supportive friends and family, and the grace of God, I finally reached acceptance about a year after the initial PDD-NOS diagnosis.  I was energized to do EVERYTHING in my power to help Bradley become successful in the classroom and in life. Today I believe I continue to primarily stay within the acceptance stage, but there are certainly times (usually just brief moments of a day) that I find myself slipping back into a previous emotion. One clarification though- I accept and embrace that Bradley is a wonderfully made child, who also happens to have high functioning autism. I will never accept that he is a high functioning autistic child that happens to be named Bradley.  Parents- acceptance does not mean we have given up hope on our dreams for our child. It means that we have accepted that God's will and His dreams for our child are better than we could have planned on our own.

Jeremiah 29:11-13 "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart."

“There are no mistakes, no coincidences, all events are blessings given to us to learn from.”

-Elisabeth Kubler-Ross

The pictures below are of Bradley on his 2nd birthday and his 3rd birthday- both spent at the Houston Zoo