Intervention & Understanding

When we first started noticing things with MJ before he turned 3 years old we were told by many that he was “quirky” and just a bit “different”. Finally after so long I realized that although these people had good intentions and were trying to be encouraging – I needed to follow my mother’s intuition that God gave me. So, when MJ was 3 ½ we took him to see his pediatrician to discuss our concerns. This doctor had not even known MJ that long due to MJ’s previous doctor leaving the practice a few months prior and he stepping in to take her place. He asked us a few questions and talked to us about the different possibilities of issues/diagnosis. The doctor was actually able to observe some of MJ’s odd behavior in the office.

I will never forget that day in the exam room over a year ago in June 2011. The doctor was very sensitive to our concerns, and cautious about what he said and how he worded things. I can still remember crystal clear the doctor watching MJ out of the corner of his eye while speaking with us. It was written all over his face – he was concerned – even looked a bit heartbroken for us knowing what the future could hold. Ultimately he completely validated our concerns and recommended MJ be evaluated by a Development Pediatrician for an Autism Spectrum Disorder. Something else that stuck with me was his words in an attempt to be encouraging “Kudos to you as parents for catching it so early. Most kids don’t get diagnosed or the help they need until they are a few years into school. You guys are great parents for being so tuned in to him. Early intervention is key”. Knowing what I know now – sometimes I have to wonder are children slipping through without help due to their parents “not noticing” or is it because the parents hit brick walls and their concerns are dismissed, cast off, or even convinced they are bad parents? No one knows their child better than the parent and I find it hard to believe that so many children are diagnosed at a later age simply because “it wasn’t noticed”.

Autism can progress as children get older and the earlier they can get help – the better off they are for a good future. I almost scoff at the term “early intervention” knowing what I know now over a year later. The experts say early intervention is key to helping an autistic child - but yet it takes over a year on a waiting list to be evaluated for a diagnosis. The experts say early intervention is key – but they make you jump through 20+ hoops to get the help your child needs. The experts say early intervention is key – but they severely limit what they do for your child and refer you around in circles trying to cast you off on someone else’s organization trying to save their own time and budget. I don’t want to sound ungrateful or resentful – for goodness sakes our family is still towards the beginning of this process. All I am saying is that my eyes have been unbelievably opened to the issues and gaps our system has with taking care of these precious kids. It breaks my heart.

We have learned in so many different ways how early intervention is key. Unfortunately we have learned through hearing of others struggles. God has placed people in our lives recently to share their stories with us. Most of them did not get early intervention for their kids, either due to late diagnosis, or the services just were not readily available. There are stories of two particular precious children that really engraved on my heart recently. One of them completely slipped through the system and didn’t get the help he needed – and now as a young adult he struggles with drugs, wrong crowds, and is in and out of jail – all because he was not offered the services he needed to help him learn the tools to cope with his condition to get through life. The other sweet child barely got help in time. Now a young teenager – he slipped through the system and got a late diagnosis a few years after he was in school. His parents struggled for months and years to get him the help he needed – and at one point this child even considered suicide.

There are so many instances where a parent may share a concern or explain to a loved one what is going on with a child and it gets dismissed. Some of my favorites (sarcasm) that are personal experiences I had sharing my concerns about MJ – “But he is so smart” – “But he is so happy and fun” – “But he talks so well”. The tired, frustrated, and end-of-my rope mother in me is left thinking “so people think in order to be on the Autism spectrum a child must be dumb, or sad / depressed all of the time, or non-verbal”. It leaves you feeling sad for your child, misunderstood, and completely and utterly alone. Listen – I know people love our family and love our children and want nothing but the best for us. I understand that people want to be encouraging, or possibly caution others from falling into the horrible trap of “hypochondriac” mode of self-diagnosing or self-treating and over-reacting. I get it, and I appreciate it. I once was the mother on the other side who didn’t understand why all of these parents felt they had to be such “advocates” for their children. Now I totally get it. I get both sides – and I see the gap.

That is why I am sharing MJ’s story. That is why I write what I write. Autism needs a voice. I want to bridge that gap between the mother who’s been there advocating for her precious child and the mother who looks from the outside going “what in the world is she doing all of this for I don’t get it”? What better way to learn and find out then to read about the personal experiences of a family who is there?

My goal is to write more frequently. I want to promise a set schedule of posts but in all honestly our lives are not in a place where I can do that yet. We are still finding our balance. I don’t want to write so often that you lose interest in my posts because it takes up too much of your time – but I need to write often enough that you do keep interest in our story – so hopefully it can touch the life of you or someone else you know.

This week you will see posts about some of the typical struggles of children with Autism and why they are often disguised. I will also share with you some exciting things that we are experimenting with that may help MJ with one of his daily struggles. We’ll give you updates and news as it comes in hopes that our story will help others somehow, some way, for some reason. Finally – we will share with you how our faith gets us through – because with God in our lives we can find direction, peace, and even joy in these circumstances.

Stay tuned…and God Bless.