Instead of going to school tomorrow, Gavin will be heading up to Akron Children's Hospital.  He will be receiving his monthly antibody infusion, to treat his primary immunodeficiency. I haven't written much about that lately and thought that perhaps some of you were unaware that Gavin receives IVIG every month. I think he's quickly approaching the 2 year anniversary of his first infusion. He will need these for the rest of his life, barring some break through in medical science. He typically does pretty well with these infusions and his body seems to tolerate the foreign antibodies pretty well. I wish this wasn't necessary but unfortunately, it is. Hopefully, tomorrow will be another relatively pain free experience for him. Fingers crossed.  :-) This was posted via WordPress for Android, courtesy…

Welcome to the very first edition of Voices of #Autism and Special Needs Parenting. This something new that I'm trying out and I really hope to see it take off. Basically, I'm helping others to share their stories, experience and let their personal voice be heard. This is so important, at least in my opinion, because it helps to demonstrate the profound and dynamic difference there with #Autism, when going from person to person and family to family. Not everyone has the same experience, even with the same diagnosis. This is where #Autism Awareness, in it's current form is broken. Not enough people recognise that no two people with #Autism are the same. Far too many assumptions are made. In the first of many voices, I would like to share Brian W's…

I'm feeling really overwhelmed this morning.  To be honest, it's sorta residual stress I was feeling yesterday. This whole residential placement situation is so stressful.  If the funding board is not convinced that this is in Gavin's best interest, they won't approve funding.  If they feel that the likelihood of success is to slim, they won't approve funding.  If they feel that we should try other ideas first, so that Gavin can stay in our home, they won't approve funding.  Their goal is to do everything possible, not to remove the child from the home. What's happens if they dot approve the funding? Where will we be then? There is literally a 0% chance that we could fund this on our own. We would have to cover almost $500 per…

Today we received some concerning news in the mail. The results of Gavin's Ohio Standardized Test scores showed up.  They were really, really low.  I don't have the previous results on hand to compare but I will be talking to the school today. I'm really concerned about this because he's regressing still. I think that we have forgotten about the regression in the wake of everything else that he has going on. Having said that, we still very much need to get to the bottom of what's going on. This is extremely important and we are going to have to divert resources to finding the answers.