We are so blessed to have so many different organizations here in Phoenix to help out families with Down Syndrome. This year we focused our fundraising activities on the Down Syndrome Network and baked sugar cookies to sell and raised around $100. The other $100 came from spring rolls I made on two evenings. Other donations came from friends who helped us reach our goal of $600. We are so grateful for the friends and family show us their love and support this way.
I was so proud of the oldest two who went door to door in our neighborhood selling cookies with the enthusiasm only the inexperienced and optimistic kids have. Bug love was a little shy but she put herself out there and was so proud she helped a great cause. Bud learned to slow down his speech and I can already see him a bright eyed missionary in the future.
Bubby tried baking on his own one day while I was upstairs folding laundry. Apparently the baby locks on the cabinets aren't Bubby proof any more!! We shall chalk this one up to sensory play!! Another monkey see, monkey do - buttering bread. I suppose buttering an entire loaf is more efficient!
I can't begin to tell how wonderful it has been to have such organizations around like Sharing Down Syndrome, Down Syndrome Network and Gigi's Playhouse. They connect us to resources and other families and these interactions make a world of difference. It is because of this that we've since learned that Down Syndrome can often come with other diagnosis, such as ADD or Autism. For some time now I've wondered if some of the characteristics we see in Bubby are reflective of something more so in March we hope to talk to a developmental pediatrician on an official diagnosis of autism. Our wonderful therapists, sensitive to the strains of a special needs parent, have subtly hinted at this. They know it takes time for a parent to process it, to mourn and to gather strength and information to act on the knowledge. I wish I could say that I did not need that time, but it wouldn't be real or fair to deny it. In the meantime we've begun the screening process for ABA or Behavioral Therapy and pray that the wait list moves quickly so we get services we are in need of.
A friend is a psychologist for a school and is sometimes placed in the position of telling parents these diagnosis. She took some time to check in on me and I was grateful for her time and concern. It was hard to admit that Bubbalicious was behind even on a Down Syndrome scale. That the adorable smiles and giggles we as parents receive disappear behind a lock door as soon as ANYTHING unfamiliar appears, eye contact is lost, and he retreats to a place that is not easily reached. It took some time for me to realize that he is still the darling little man I love and will always love, that any additional diagnosis will only bring additional needed services. It helped to share these thing honestly and openly.
The weight I feel is in learning more, understanding and applying another field of special needs to our busy lives feels heavy. I have fought hard to have the balance we have now so that each child has their needs met (as much as any child can - because as parents if we are honest, we can never meet all their needs) and I feel like we've found that for the last few months. It's been nice to sit on a plateau for a bit, but apparently it is time we climb again. I'm not afraid. The Lord has carried me through so much these last few years and I know He will carry me through more. I am tired though - but there too I'm sure I will see His hand.
Anywhere I go now the most common phrase I hear is, "You have your hands full!" and it reminds me of a shirt that says, "If you think my hands are full, you should see my heart!" It is true, and still true even with the weight of what is coming. Having Bubby has taught me how much I need others and somehow in the process they need me too BECAUSE of where I've been. He has taught me to look beyond the outward appearences to the heart, just as the Lord does. In so doing sometimes I even get a glimpse of how to communicate heart to heart.
Just today Bubby was throwing a fit like no other. He's a solid kid and it's become rather painful when he kicks and bites. He was frustrated at the difficulty of communicating what he wanted and at my lack of understanding. He got most of his anger out and then I just held him. I apologized for not understanding what he needed and said I was sorry he couldn't tell me more. After a few minutes snuggling I offered him a cookie to soothe both our frustrated hearts and he smiled warmly and hugged me in return
He doesn't usually go for stuffed animals but he voluntarily hugged Dory and Stitch one day at the Mall. He wouldn't do it with any other animal and in so many ways it fits. He's a Stitch or Dory, just different enough that it's obvious. On the other hand, there would be no finding of Nemo without Dory, no fuller life for Lilo without Stitch. So it is for us. I'm grateful for him in my life. He adds to it in so many unexpected, beautiful ways.
So begins our family journey into understanding autism. Family, friendships, connections to others always move you along paths you never knew possible and since my experience thus far has been that it make me grow, learn and love more I will with faith and peace take my steps onto this path.