No more training wheels

This is Little Bug's last week at Birth to Three. Nick and I are a bit panicked. For us, this means that we no longer have a team of 5 highly educated, informed, and dedicated people supporting us through this.

This journey has been amazing. Everyone wants to give Nick and I all the credit- "Your follow through at home is amazing!" or "You two must work really hard with him!"- forgetting that we couldn't do this without our team.

Our team has helped us come up with such simple strategies that we never would have thought of. They have done crisis interventions for when Little Bug's self injuring behavior was getting worse.

They have been there to set realistic expectations for us as parents and to set the bar high for Little Bug. They have never accepted can't or won't but will.

I feel a huge sense of loss at this turning point. I also feel lost. I know we will get through this and innovate and come up with therapies. For now, all I can think is that I would love to give them the world and yet I know that that would never be enough. I can't ever tell them how grateful we are.

Sick and Tired

Little Bug and I are sick and tired and tired and sick. He has a doctor's appointment today because he has had a lingering cough. I don't think its anything, but the last time he almost had pneumonia, so we are getting it checked out.

Given that he was so sick and tired, he did really well last night. We are continuing to work on sharing. Last night was a bit difficult for him to share, but he was able to consistently sign MY TURN without prompting whiling pointing at an object. He also did really well at waiting.

I know we still have miles to go, but this is so reassuring to get constructive small steps in place in order to work towards bigger goals. His Autism Teacher and the staff at Birth to Three are saints. I honestly don't think there is anything we can do to thank them for everything that they have done. We will always be grateful to them. They work tirelessly for not much money and for rewards that most people find silly- like a sticky slobbery kiss or a hug from a kid. Most of us would say "THAT'S my bonus?", but they simply say thank you and hug back. They wish for your child to succeed and want to see it almost as much as you do. All in all, they are truly vested and amazing. Little Bug is lucky to have them.

So, our good friend Mel is coming over on Sunday to watch Little Bug so DN and I can have a break! She is also going to work on the idea of a Halloween costume with him. Getting him dressed in regular clothes has been quite the battle recently and when shown a Halloween costume the anger becomes strong in him. She is bringing a Thomas the Tank engine costume to our house to see if he will do it. If he doesn't, its no big deal, but we would like to try.

Here's hoping his appointment goes well and we feel better soon!

The Good, The Bad, and The Ugly

So we had our meeting with Birth to Three. I want to start on a positive note and go from there:

• Little Bug will be starting Play Therapy this week- hopefully Wednesday if we hear from our FRC (Family Resource Coordinator) and Autism Education within the month. This is pretty exciting.
• We received good information and recommendations regarding school placements and IEPs (Individualized Education Plans). We realized that we get to start that fun in January- 6 months before Little Bug's birthday.
• We got the results from the cognitive evaluation and Little Bug averaged at 17 months. She felt that the test was not a true measure of his skills and that he has really good skills, but because the test had to be done in a very specific manner, his scores were lower.
• The wait for the Occupational Therapist will be 1 month. That isn't too bad. We should be getting a call from the OT to set up an appointment.
• The wait for the Speech Therapist is not determined but apparently is so bad, we were told to contact Mary Bridge and other private resources.
• We are now responsible for co-pays for both OT and PT. This was just changed and not told to us. This was a huge shock for us as when we began with our FRC, we were told that *everything* would be paid for- no charge to us. While we appreciate that they are asking us to only pay the co-pays, when you are looking at 2 to 3 (as OT is sometimes split into two appointments) co-pays, that is between $280.00 to $420 a month. This is not something we can afford.
• There is an option to apply to Pierce County to have them cover the co-pays. If they do not, then we will need to work with the Insurance Coordinator at Birth to Three.

So our general impressions were as follows:

• A good majority of this could have been done by mail- the results and letting us know when therapy would begin. There wasn't an option for discussion or give and take- it was this is what we have, take it or leave it. Advice- Find out what the purpose of the meeting is and decide if you really need to attend. This meeting yesterday was one where just one representative of the family could have gone.
• They were very surprised to have a family that actually knew about therapy tools and that challenged the status quoe. In fact, they had a really hard time dealing with confrontation and that is something they could improve on.
• There is nothing for children to do at these meetings. Either bring someone who is okay to have the information relayed later or hire a babysitter. Little Bug quickly became bored with toys- which is kinda typical of a kiddo with sensory issues- and began to wreak havoc.
• The communication is poor- we were not informed of the change in financial policy from Birth to Three. Birth to Three seemed very hesitant to give us bad news.

This has been an emotional roller coater. We are very frustrated that the area Little Bug is struggling is the last place to get help. To me that seems incredibly unfair and hard to swallow. While we are not stating that he doesn't have difficulty in social skills, stereo typical ASD behaviors, safety issues, self help issues, it seems that the more communication skills he gets, the more the rest of it will come together. For example, how do you teach a kid to put on their clothes if they do not understand the words that you are using?

We always have a backup plan. DN is calling Mary Bridge today to find out what the waiting list is and adding Little Bug to it. I will be contacting our FRC to begin the process of proving financial hardship for Little Bug's co-pays. Finally, we are going to be buying a HUGE amount of Signing Time! as Little Bug loves it and it is increasing his sign abilities daily.

So we have a little bit more information

The evaluation at Birth to Three went pretty well. Little Bug seemed to be more attached/in tune with these thereapists than the ones from Mary Bridge. He was more willing to contribute to activities and play along with their tests.

The therapists seemed really impressed with how much he was signing- they said that for a child to learn 20 signs in a month is tremendous and speaks well for his ability to learn.

We won't know the outcome of the cognitive evaluation for a while and I am okay with that. I honestly think that he has a lot more potential and knowledge in that little noggin than we are aware of. We just have to figure how to get it out.

On the upside, we found out that he will be doing Play Therapy- with a peer group, Education- at home and center, Speech Therapy, and Occupational Therapy. The play therapy will be three times a week for an hour and half, Education twice a week for at least an hour, and Speech and OT will each be one time a week. He should be starting his Play and Education therapy by the end of the month! YAY PROGRESS! There is a waiting list for both Speech and OT- longer for Speech than OT. Once a therapist comes available, we will get a call and have a meeting to create another schedule. Although, I expected to be upset by the waiting lists, I have to say that it feels like we are taking a step forward.

Here's wishing him luck and encouragement- we know that he can do it.