To say this has been a journey is an understatement. It's been filled with fear, sadness, joy, celebration, anxiety, and worry. As much as I've tried to fight it, it's our life. I live, breath and speak it. I may annoy people with my constant chatter of Reilly, but in reality, it's the only thing I know. It's never intentional. I really wish I could place my friends in my shoes for a day. I couldn't begin to describe the battles we go through on a daily basis to fight for Reilly's well being. Any other Mom with a child with Autism will understand this.
For example, Reilly is given a certain amount of money from the government each year to help fund his therapy, materials etc. We are eternally grateful for this. With this gift comes great responsibility. Constant phone calls to allocate certain amounts of money to certain therapists and companies. Long, tedious paperwork that needs to be faxed, mailed and filled out. It requires much patience and time. You have to ensure as his parents that the money given to you is used appropriately. It's as if they give you the money, theoretically, and say "ok here you go". You try your best to use this significant amount of money each month wisely. How do you begin to know where to spend this money the best? Every therapist or company you encounter relies on you to allocate them how much ever you wish. And you have to ensure the right paper work to go with that and that they use it correctly. But I do feel very appreciative to live in such a place where this exists. Not every one is as fortunate as we are. For that I am very thankful. Just trying to show to everyone how much time consuming it is.
I've had my moments on this roller coaster ride. I feel appreciative and thankful some days. Others, I wake up hateful I have to handle this much work and responsibility for one person. The therapy, the people, the paper work, the appointments etc. It feels ongoing and never ending. I had a day like today when the long journey we've been on so far has made it all worth it. First I should back track the story before I share the exciting part. Back when Reilly was first diagnosed Autistic almost a year ago he only had a handful of words he could say consistently at 2 1/2 years old. He couldn't point to things in pictures. If you showed him a real cow on a farm and one in a picture he wasn't able to connect them together. He had no attention span and no eye contact to say the least. Fast forward to today. He's now been in consistent daily therapy 5 days a week 2-3 hours a day at our home for the past 5 months. His therapist has been working on the alphabet with him lately. Recently, I caught him singing it by himself at the breakfast table. No prompting or help. Which has been the case all along. I'd have to prompt the first few or all letters to get him to say them with me. I was happy as could be. Wait, it gets better. I bought some flash cards the other day for the therapist to use with Reilly to help him be able to recognize the alphabet on a card. She's been working on this on a puzzle for a short amount of time. She was using the cards for an hour or so today. I came in to give Reilly a snack. I just casually showed a few cards to Reilly. I held up one and said "Reilly what letter is this?" ( which it was the letter Z)..He quickly responds " Z". I am almost in tears writing this. He began to say at least 10 more random letters I kept showing him. Wow. He really is such an intelligent little boy that some don't give him credit for. He really does hear me in there. He may not always show it or say it. But it's there! After this I felt like I just won the lottery!! Such a huge accomplishment for a boy who could barely say 2 words together a year ago. He can talk in sentences now. Almost fully understandable when he talks to you. He walks around constantly now and says " thanks mom". " thanks dad" and hugs us. Thank you to my wonderful son, who has seen our struggles first hand and can't stop thanking us for everything we do for him now.
Some days are easier than others. But when I hold him, rock him and put him to bed. I sit and watch him. How incredibly strong he is. He's been through so much and keeps going. I feel beyond proud of how far he pushes himself each day. Never in a million years could I imagine Reilly coming this far a year ago. I am so lucky to have such an amazing little boy in my life.
