Autism awareness month

April is always a special time for our family because it's autism awareness month.  With autism awareness month here, I have been thinking a lot about what I would want people to know about what I've learned from this experience.

It's been 18 months since whitaker got diagnosed with autism spectrum disorder.  It's been a hard 18 months-not going to lie.  But rather than focusing on how hard it has been, I wanted to really focus on is what I have learned and the positives of the situation.  

Whitaker is a happy and unique boy.  He is so happy!  We have been blessed that he is happy.  He is also a sweet boy and has always been sweet.  When Chins was born, he instantly loved chins.  I was convinced that he wouldn't care or that he would act out, but he really did love him from day one.  I feel like these two were good friends before this life and their bond here has only gotten stronger. 

 He is sweet to us and has always loved to snuggle and be held.  He loved to nurse (even though he was the worlds worst eater ever) which I firmly believe was what solidified our bond to carry us through.  He has always loved Paul and I, has always responded well to us and has always wanted to play with us. He has always been connected to us-which has also been such a blessing.  I hear these stories of families with kids who want nothing to do with their families or parents-we have never been that family and for that I am forever grateful.  

I feel like I have really been taught about true unconditional love and I feel like whitaker has never challenged my love for him.  He sure has challenged my patience-but I have only felt a deeper and a different kind of love for him in those moments. Even when he physically acts out at me when he is scared, I feel frustrated and sometimes done for the day but it has never made me love him less.  I never knew that kind of unconditional love until I had whitaker.

Another thing I've learned is that just because you feel unqualified or overwhelmed or even uneducated doesn't mean you can't be your child's best advocate.  When whitaker got diagnosed, I knew nothing about autism.  I think people thought I knew about it a lot because I was a nurse, but the truth is, I knew nothing.  So many times, I have felt like I am in way over my head-but I've learned that just because I'm not the expert in autism, I am the expert in whitaker.  I ask lots of questions, ask for every resource or handout available and really try to educate myself about autism. I still am not an expert, but I take every resource available to me and take any information that I feel we can apply to our situation.  I feel like the more educated I am-with reliable resources, might I add-the better I am able to advocate and fight for whitaker.  I also had to realize that no doctor was going to take whitaker under his/her wing and it was up to me to make sure I was educated, up to date and fighting for him.  This wasn't an easy lesson but I'm glad I have learned it.  I think that has made a huge difference in his outcomes. 

I've learned to be honest.  When we first started therapy, I used to try every suggestion that we were told.  Sometimes, just because of Whitaker's personality, those suggestions did more harm than good.  I have had to learn to be really honest with our therapists and tell them if something isn't going to work-for whatever reason either because whitaker or time and other logistics.  It's been really liberating to tell someone, "I don't think that will work because blah blah blah," and having them either help me come up with a way to make it work by tweaking it or telling me another thing to try because it makes my life easier.  I don't feel trapped trying suggestions that make things harder.  If I know something isn't going to work, I stress out about it and feel like a bad mom that I can't figure out how to make it work.  Being honest has helped me feel better and less stressed and it has been more helpful to whitaker.  Being honest is so important-and with honesty, our therapists have been able to help us more.

That being said, I have also had to learn to be open.  When we first started telling people about whitaker's diagnosis (and still to this day) most people with little experience with autism would think about that one story they've heard about autism.  I've heard some interesting solutions or suggestions.  I used to get really annoyed when people would give me these suggestions because everything was so overwhelming I didn't want to hear about this obscure and rare therapy that cured a neighbors best friends sisters cousins baby.  I also used to take it personally because people never asked what we WERE doing.  Now, everyone was only trying to help-but at the time, I couldn't see it that way.  That being said, in all those suggestions that seemed laughable at the time, some real gems have been shared with us.  I have had to learn how to hear those suggestions and filter them out to what will work for our family and what won't. It's a balance between hearing people out and also keeping perspective.  When I hear of a new therapy or something to try, I always ask our therapists if they've heard of it and if other families are trying it and if they feel like it's been worth it.  Unfortunately, I don't have unlimited time or money, so we have to do our research on what has evidence to back it up and what others families are trying and having wins with.  That has been really helpful for us.  

I've also learned that appearance matters.  Now, don't be outraged when you read this, but having your kids dressed and groomed really does make a difference in how they are accepted.  My boys are dirty-they are boys-but I try really hard to have them looking presentable for as much of the day as possible.  When whitaker is dressed in clean (and cute) clothes, groomed and clean, he is much more accepted out in public, especially when he starts to have a meltdown.  People have told me, in the midst of a meltdown, "oh, well he is just so cute!"  If whitaker looks dirty, if his hair is a mess or his nose is nasty, and then he behaves poorly, I think people assume the worst.  Now, it's not like Paul and I are rich-but I spend a lot of time trying to shop sales and price adjust because having him look cute makes a difference and it matters.  Even as far as teachers and therapists, I think when you have a child who looks cared for, they are willing to go the extra mile for them.  I think we all associate clean children as children who are cared for-which means their parents care about them and are invested in them-which means they are willing to do whatever they can for them.  Appearance matters -bottom line.

I've had to learn to have a thicker skin.  I've had to let go of the fear of judgement from others who don't know the situation.  When you don't know that whitaker has autism, and he looks totally normal, and then you hear him talk or see him start to self-stim or throw a tantrum it is confusing because his behavior is inconsistent with his appearance.  It throws people for a loop.  I see it all the time when people take a second look or whisper to whoever they are with.  This is still really hard for me.  I hate it-but I have had to learn to toughen up and not be so easily upset by it.  I've posted about judgment before-and hope you'll go and check out the post.  But I really have had to thicken up my theoretical skin and not let it bother me so much.  I've had to let go of being embarrassed to sing "patty cake" the entire time we are at the store or pulling out the iPad when we are at a restaurant or other event.  It's been an important step for me.  

And lastly, I am so grateful for the love of family.  My sister, who has three kids of her own, has been one of  my biggest supporters.  She babysits whenever she can and I never worry about whitaker when he is there.  She has taught her kids how to love him and play with him.  She protects him and defends him.  It's been such a blessing that he loves them and her.  He asks to see her kids every day.  Now, everyone in our families have been super supportive and loving-and they have all accepted him-but I feel like it is so important to have your family and your kids cousins on your side.  One day, we were up with my sister hanging out when Paul was gone hunting.  Her little 7 year old came and asked me, "Jen, does whit still have autism?"  The question totally took me by surprise, but what it started was a conversation with my two nephews about my little boy and how they could love him.  It also had shown me that my sister had talked to them about it, not only helping me and whitaker, but helping them know how to understand and love him.  If you have a family member who is going through something or who has a child with an issue, try to be like my sister.  Support makes all the difference.  And through the experience of being supported and loved by all the members of our family, I have, in turn, been able to support and love others. Learn all you can to help them, learn the tricks, ask what they do at therapy, learn what they are working on.  It is more helpful than anyone knows.  

This experience has taught me so much-and even though I would still love for whitaker to not have autism, I am forever grateful for what it has taught me and our family. 

Jen