The positive side of things...

Life has presented us all with a plethora of challenges and autism certainly has made things more difficult, but to say it is all bad wouldn't be true either.  First and foremost, my children are healthy!  Thank God for that, things could be so much worse.                                                                                             

One of my favorite things about Max is his artwork, It is so amazing and it appears to be a way he communicates and releases his anxiety. For example, back in December he had some pretty major dental surgery and for the next week, he kept drawing pictures of people and animals with very large teeth and a lot of them too! It was really very sweet and telling. His interest in art started early on when he would ask us to draw things. Of course Mike is a much better artist than I, which is a good thing since Max used to ask us to draw Manatee's and other ocean life. Finally, as his fine motor skills developed more he took over and has proven to be the artist in the family! Many ask, is this his "rainman" thing, and after the initial annoyance wears off and I explain that his art isn't detailed in a way that appears savant like, it is just very creative and it is his absolute favorite pass time. He loves the magna doodle, white board and markers, crayons, basically any medium we allow him to have. Of course the time he swiped a black sharpie upstairs and drew Blue's Clues paw prints all over his bed and walls was not my favorite, but that is why the Magic Eraser was invented, right?  Sometimes he draws the same thing over and over. Sometimes a red circle is just a red circle, other times, it is a jelly bean or rocket ship.  He also uses Play-doh and clay to make his favorite letter or number of the day, or sometimes it is an animal.  It is so terrific and it makes me smile each and every time! Art is a way to encourage Max's communication and keep him engaged in our world, which is crucial for his day to day successes. I am so proud he has found something he enjoys.

In addition, many 8 year old boys are over their moms kissing and hugging them all the time, not my sweet Max, he can't get enough of me. Sometimes this attachment can be challenging, but I am grateful. I am also sometimes glad I don't have to deal with the raucous nature of young boys. All the Star Wars, wrestling, and other rambunctious play is overwhelming to me.  I am a lover, not a fighter and I am glad Max is too.  

As for Avery, it is her desire to imitate every word even though it is a struggle that warms my heart. She only has about 10 words she uses independently, but she will try anything. So of course Zoe has taught her some funny stuff, like "stinky butt" when her diaper is full. I know lame humor, right?  Her play skills are also delightful. So often children on the spectrum don't play with toys, but Avery feeds her dolls, drives her cars and has had a million tea parties. Thank goodness she is patient because Zoe dresses her up in princess costumes on a regular basis as well. She makes a really cute Cinderella! Avery is great with puzzles too. Of course she does some of the perseverative ASD things like stacking buckets of toys or lining up cars, but for the most part, her play skills are AWESOME!  I am so glad she lets Zoe play with her, that is what sisters are supposed to do and Max is not as tolerant. This is so important for our family dynamic.  Avery is also so curious. She will climb and jump on anything just to see if she can get higher.  At the park she wants to play on all of the equipment, even the ones she is too little for. This year she is ready for a bike with training wheels and she hopped on the first time without hesitation. Of course she needs some guidance to get herself going, but she is willing to try. This fearlessness takes my breath away at times, but that kind of tenacity will help her go far in life. I wish I tackled life the same way. I hope she never grows out of it. I will probably change my tune though the first time she breaks her arm though!

My dear Zoe has the kindest of hearts and she deserves a post all her own to address her soulful nature.  She is mature beyond her years in so many ways. Autism has robbed her of a normal childhood, but she will grow into an adult with the patience and kindness many will never acquire. 

Autism can be unbearable at times, but even on the worst days all 3 of my children are so happy. They are smiling more often than not and giggling all the time. I guess we must be doing something right if everyone is so happy.  I guess sometimes the silver lining is hard to find, but if you look hard enough it will always be there.

Evaluations

So today I met to go over Avery's recent annual evaluation results. Not exactly a new experience as I am pretty seasoned in this area. The funny thing though is that it never gets easier to see how "behind" your child is compared to their same aged peers. Yes, I know, they are only numbers and it is only a snapshot in time of what a child can really do...blah, blah, blah, I have spewed this same speech to many families throughout my career (talk about life coming full circle).  Of course it is true, those tests are nothing more than a gauge to mark progress and are truly not representative of what my she can actually do, but it is hard to see it on paper.  I just try to focus on the progress made regardless of how it compares to others and on that note GO AVERY! You are doing amazing!  

Home based services

March 4th marked 3 years of full time, home based ABA therapy. WOW!!! When we first signed up for this we thought, maybe a year or two, but that is all we can handle.It is only a season, right? It is a crazy life we lead. Six days a week, 52 weeks a year, we have anywhere from 2-4 additional adults in our home providing wonderful behavioral therapy services. It requires me to stay home since a parent or other responsible adult must be present while they are working in your home. These hardworking therapists see absolutely EVERYTHING. Good days, bad days, no coffee mornings, dirty dishes, and just about everything else you can think of as it relates to my family's daily life. It can be very invasive at times, but worth every minute when I see how my children are learning. It is a surrender of our privacy and natural home life, but I look at it like I temporarily turned my home into a clinic. I have a trampoline, mats, and cuddle swing in my living room- how's that for feng shui!

Our three years will be over soon as my Max and Avery will move onto to center based ABA services through the same company. I am excited to have my house back and proud that my children are ready for the next step. I understand why some people would not even consider it an option to do home based ABA.  It requires a massive sacrifice on behalf of parents, which for us included my career, privacy and serious down sizing! At the end of the day though, this has been more worth it than I could have ever dreamed! Thank you to all of the hard working therapists who put forth their best efforts to help my angels. We are looking forward to the next stage of therapy!

To be sad or not to be sad, that is the question.

All children are challenging and parenthood is a battle sometimes! When it comes to autism and the impact it has on families many reply, "are you sad?" or "how terrible for you!" Yep, I have been sad and yep, it can be more than terrible at times. I don't come from a place of "I wouldn't change a thing," because I think people who say that are in some ways lying to themselves. Of course I love and adore my children for a million different reasons regardless of disability, but to say I am happy they have autism or that I wouldn't change it is a lie, but not for my benefit. Of course I would prefer if my 8 year old was toilet trained or that my 4 year old could say more than 10 words independently. Obviously, I wish Zoe could talk to her siblings and they could actually talk back and engage with her like other children do, but this isn't going to happen. Instead, it is what it is and I am gonna make the best of it each and every day. I do wish they didn't have autism, but sadness and tears only last a moment. The pride and joy I share with them everyday is what keeps me going. I feel as though I appreciate each milestone a little more and am eager to get them to the next level.

Autism is hardly a dream come true, but it is also NOT a death sentence. My children are healthy and most importantly HAPPY! I am blessed to be their mother and truly proud! We don't need pity, just support, patience and compassion, but really, don't we all?

The Public's Perceptions

Last week during a typical Target outing with Max and Avery (Zoe was at school) I had the most pleasant reception from the lady behind us in the checkout line. Of course Max was playing with the tags by the candy and Avery was trying to crawl out of the cart. Max was very loudly going to town with his verbal scripting and stimulation. He was excited and happy and this always attracts attention. He was running away from me (not escaping) doing his excited "dance" and I had to keep running to get him as he rarely answers to his name and has no awareness of safety. During this time I also needed to empty my cart, pay, and get going. Avery was not happy and only wanted the shiny bag of Starkist Tuna, but guess what you have to ring it through first! She does not understand this concept. :)

Okay so chaos at the checkout is not big deal, it happens to ALL parents, but it is the staring and mean comments that usually trigger my response because my children cannot help it that a simple trip to the store can be very stimulating for them. This day was different. As I was trying to get through the line, I explained to the lady behind me "My children have autism and I am sorry it is taking me so long, this is always crazy!" She said, "No problem, I am so glad that you are doing this." I am not sure what that meant exactly, but it warmed my heart at the compassion of others regardless of her intent. Her eyes and smile were warm and not full of pity, which for the record is equally annoying as rude stares! It definitely took an extra 15 minutes to finish up and she was patient and kind. If only everyone would respond that way.

I have had many trips where it doesn't end so well, but this trip was great. Sometimes the simplest exchanges mean so much. This story is important to share, because it was special to me and my children. We all have our challenges and it takes patience to appreciate the public's perceptions both good and bad! I hate the phrase, "It takes a village to raise a child," but I do think it takes a village to show compassion sometimes in today's world!

The message I want to send here is that people really are good at heart, at least that is what I believe.

It's only a season...

My father has always told me, "It's only a season" when times are tough. It has always served as a nice reminder that even though life can be excruciating at times, there is always an end in sight. Although I have not always wanted to hear it, he is right. It is only a season and things change and brighten for the better. In the case of autism- he is dead wrong! Autism does not last a season, it lasts a lifetime and although it isn't a progressive disease it is a very daunting task to think that ASD is the forefront of our lives and will be forever. This is not necessarily the worst thing that ever happened, but this is the one time I cannot take that advice and run with it knowing things will get better.

Of course things have dramatically improved over the years, but autism is a lifestyle and not one you choose. I see the future as bright and full of surprises, but to say it is only a season truly doesn't apply.

Diagnosis

We recently recognized the 4 year anniversary of receiving our son's initial diagnosis. Time really flies and we are at such a different place now. We went from PDD-NOS and thoughts of "at least he will be high functioning right?" to a realization that he is in fact profoundly autistic and has challenges we never thought would be a part of his life. Denial is an amazing coping mechanism, one that I realize now I desperately needed to get through the initial stages of grieving and stress.

It seems odd to tell a story of grief and stress when now I am so blessed to have a wonderful son with so many amazing skills and strengths that outshine his disability as a whole. Sure he still has a tall mountain to climb, but we have already come so far, I am so proud to be Max's mom.

As for our daughter, we are around 2 years into diagnosis. I remember thinking while pregnant with her- whew, it is a girl, the odds of her also having autism are minimal and how could we actually end up with two kids on the spectrum, right? The odds were not in our favor, but it is what it is! We have already been through the stages of loss in a similar manner we did with Max, but have come to the same place. The future is full of uncertainty, but she is a beautiful girl who lights up our lives daily. I cannot wait to see where Avery and her grand sense of curiosity takes us all! She is an angel.

In the middle of all of this chaos is my sweet, precocious Zoe. Essentially she is the big sister to both and that brings on a childhood we never anticipated for her. We work very hard to find the balance between "normal" (god, I hate that word) and "keeping things autistic." She has had to grow up and sacrifice in ways most children don't, but she has the heart and compassion of a well seasoned adult. She is so tender and caring with her brother and sister and it makes my heart so full to think about her loving soul.

Then there is my husband, Mike... he has adapted and made things work and been at my side the entire time... thank you! Autism is hard for all parents, but mothers get most of the TLC when father's are equally deserving. He has shared in all of the joy and sorrow and this needs to be recognized.

As I read this back it sounds kind of sad, but please know that is not how I feel. Looking back on the "diagnosis years" are bittersweet, but I do believe God only gives you what you can handle. I am glad he has such high expectations of me.

Thank you and good night!

After 4+ years of enjoying our adventure, it is time to chronicle and share what we have learned and experienced! I have three of the most beautiful and delightful children and two of them are living with autism. This diagnosis has changed our lives in every way imaginable. It is time to broaden our journey and share our experience. I hope to gain insight and perspective from other people's stories and expand our inner circle to include more who are living this adventure! For our family and friends who already love us thank you so very much from the bottom of our hearts. Your unconditional love and support has helped us all find peace and hope in this diagnosis.