Mid year review

We received notification from our FRC that it is time for her to do our mid year review and then our next step will be to get ready for preschool. Talk about fast, it seems like we only just started this and have barely gotten our feet yet.

It is becoming a time of unknown. Will Little Bug qualify for preschool? We hope so. The plan from everyone in the system, has always been that of course that he would go to preschool. But, apparently, due to the progress he has made, there is doubt as to whether he would qualify. We will have to have him evaluated by the school district and get recommendations from the wizard- the wonderful neurologist who diagnosed Little Bug- as well as his current therapists. Monday was the first time anyone expressed doubt about him qualifying- well, he does have a diagnosis, so that's a good thing.

If anyone has tips or suggestions or even a vague idea about how this process works, please let us know. I have to say everyone involved has been as vague as humanly possible while still speaking to us.

Even during this time of ambiguity, we are adding new therapies- speech and brushing as well as home made therapies. We are working on item recognition. While its great that he can say quite a few words, he doesn't always get that a word represents an idea or object. So, we have crafted a home game using memory cards to have him match pictures- which keeps him interested as it is a puzzle- and having him name the objects.

A hoot and holler

Little Bug has his first day back at school yesterday. My ears still hurt. It was as though all four children in attendance were communicating by meltdowns and echo-location only yesterday. I have never in all my life heard such noise.

They all had difficult moments- being all done, not tackling our friends, not throwing fire trucks at each other, and no eating the blue sand. With school, it normally seems like each child has an assigned bad day where everything is hard and they need extra help from the therapists and parents. But, they usually happen one at a time.

They all had hard days yesterday. I have a feeling that this was due to the extended break from school- two weeks planned and a week and a half unplanned.

Therapist A came over yesterday and it was great to see her and have her work with Little Bug again. She watched the videos we had made and was truly shocked. She was surprised to see Little Bug have such a hard time, but she did say we did a great job- we were even keeled, continued with the process of the task at hand regardless of the drama occurring. She had no criticism for our handling of the situation, but was surprised.

She asked us to continue video taping as she felt like she was really getting to see the whole picture. Again, we asked her if there was something we were doing to cause such a different behavior and she still feels that it is because she is still too novel with Little Bug.

We made a recap for her of the accomplishments and hardships from break and I would like to share them with you-

1. Little Bug can now put on his own pants.
2. He tried 4 new foods- including jello
3. He has mastered the concept of 1- take 1 M&M, etc.
4. Self injuring has decreased and changed to hitting himself rather than biting
5. He is falling asleep by himself
6. He is singing along with songs- in his own language

Now, here are the difficulties-

1. Echolalia- he is repeating large portions of movies and what you say
2. While meltdowns are becoming less frequent, they are much more intense.
3. He has developed a sensitivity to having textures on his hands. This morning, running water on his hand made him scream and recoil.

One new difficulty for us and Little Bug is that he now is overly attached to me. Which is hard on Nick, because Little Bug screams when he tries to interact with him. Its also hard on Little Bug because I am the main worker of the home. If anyone has suggestions- other than backing up what Nick has told him, let us know, because this is pretty upsetting to everyone involved.

We also found out that we should begin speech therapy soon!

You're the devil in disguise

Little Bug often lives up to this with his therapists. We will tell them that he has problems dressing, biting, and with sharing and yet with them, he is fine. They have said that usually kids go through a honeymoon period with their therapists. As a parent, this is frustrating as all hell because you know that your kid is having a hard time with something and yet when help shows up, not a problem. When they leave, suddenly shoes and socks become an issue and giving a cat a bath would be easier than Little Bug. These are the times that you think things like Why can't he just put on his damn shoes and then instantly feel like a bad parent.

We discussed it with them in depth as we feel like they aren't able to maximize their time with him as he doesn't have the really bad outbursts that he has with us. Their solution was somewhat surprising- tape it and like a football coach, they will go through play by play and tell us how we can improve what we are doing for Little Bug. Not 24 hours after our discussion, we have three tapes- getting socks on, getting boots on, and putting on a coat. I imagine to the neighbors instead of doing those activities, it sounded as though he was being tortured or murdered or both. Nope, just getting dressed folks- nothin' to see- move along.

(Miss Cleo moment- I am seeing a *huge* change in topics and a slight chance of foul language.) Does anyone have a family member- or several- who just don't get it? They don't get why your kid can't just eat dinner or can't just put on their damn shoes or any other thousand examples. This has become a huge problem for Nick and I and his parents. Nick's step dad's family always gets together the weekend before Christmas. Unfortunately, this involves 30+ people in one house. Little Bug has a hard time visiting our friends who have 6 in their family. Neither Nick or I can attend because we both work.

We have tried explaining that new situations are extremely hard for him and that we aren't able to just go do things on a whim. We have to prepare and explain and have pictures in order to talk up a situation in order to minimize the meltdown- notice I didn't say avoid. Of course, since it is the holidays and apparently you must do all the holiday traditions you can think of in the shortest amount of time in order to be a good person, Nick's family has forgotten this and everything we have told them about Lennon.

His mom called and wanted to know if we would let them take him to this party! (excuse me as I roll around on the floor laughing and then wiping the tears from my eyes) NO!- that is the answer. Can you imagine giving your mostly non verbal toddler to people he doesn't see that often knowing that he will be taken to meet over 30 people he has never seen before and be expected to open presents without the two people he depends on most in the world? NO! That would be hard for any child- typical or not.

Now, excuse the hell out of me, but I am so tired of explaining the same damn things over and over again. It reminds me of what my parents used to tell me- The answer hasn't changed since the last time you asked this question, which by the way was 5 minutes ago. If you ask again, the answer will still be the same, but you will be grounded. SON OF A BITCH, this is frustrating.

I put myself in their shoes and I can empathize- they have dreams for what they would experience as grandparents. They would see their grandchildren anytime they wanted and be able to flit off on a whim for any number of fun activities. They would be able to do all the traditions they had when they were little kids and show their grandchildren what was important to them.

Well, you know what, we had dreams too. Dreams that didn't involve therapies 4 times a week and then follow up 7 days a week. They didn't involve picture schedules or having every minute of every day mapped out. They didn't involve sensory issues or regression. They didn't involve staying up at night gripped with fear because you don't know how you will pay for the therapy your kid needs.

But you know what, the old dreams are gone and it is time to make new ones. This happens for all parents regardless of whether your child has special needs or not- you want them to be good at sports and they aren't. You dreamt that they would be a Christian and they decided nope, not for them. We have to move on and adapt. By trying to adapt your children or grandchildren to fit your dreams, you are creating misery for everyone involved.

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.

Captian, MOOD SWINGS AHEAD!

So before I go into the details of what has been this morning, I want to first point out the many steps forward Little Bug has taken this weekend:

1. He wanted to play with other children at the beach. This is big for him. Normally, he tries to jack their toys and run, leaving them with their mouths hanging open. Not on Saturday. He was all about being close to them and wanting to join in. While he didn't make eye contact or talk to them, the fact that he was in very close proximity- 1 foot- and stayed there peacefully is huge. GOOD JOB BUG!
2. HOUSTON, We have pretend play. I repeat, pretend play. So in case you are unfamiliar with ASD, a lot of kiddos on the spectrum have a really hard time with pretend as it deals with intangible and non literal ideas. But, Little Bug did it. He found a chunk of wood and made it swim in the ocean and called it fish. This is big for him. Normally, if it wasn't an actual fish- toy or otherwise, it would not have been made to swim- only chucked back to the waves to once again be regurgitated to the shore.
3. He shared. We went to a good friend's house this weekend. Now, we have been there more than 6 times for at least 4 hours each time, but each time he acts as though he has never been there before and has never seen these people. This time, after warming up, which didn't take as long as usual, he shared with them. He let them touch him- huge, a lot of people would get in serious trouble for touching him. He let them tickle him. This is an amazing accomplishment for him. It also speaks volume about this family- he knows they care and can feel it.

(NOTE: RANT BEGINS NOW, so for the squeamish, please run.)

Now, I received an email from our FRC this morning regarding the wizard's wonderful diagnostic screw up. She let me know that she received the letter from him, but Little Bug's diagnosis needs to be on paper before our meeting in less than 12 hours with the Birth to Three center. Birth to Three has a very intensive Autism program, but children *must* be diagnosed prior to being recommended.

So, what I am being told is: THE WIZARD'S FRACKING MISTAKE MAY COST MY CHILD'S THERAPY TO BE DELAYED. *queue ominous, you better fracking run music* The wizard and his staff got off light when DN called. DN is my better, more patient, and less quick to anger half. He is also much nicer than I am. Ever watched National Geographic specials that include mama animals- elephants, hippos, tigers- and their babies? Ever watch what happens when the baby is threatened? Lets just say this- a mama tiger ain't got shit on me.

In exactly 1 hour and 31 minutes, I will be talking to the wizard. We will be picking up Little Bug's diagnosis in hand today so that we can take it to the center today. I will not settle for less as no child deserves less than the bare fracking minimum.

On the upside, we have been invited to attend a weekend class for therapists and parents of children with Sensory Integration Disorder. The city is going to pay for it. I simply have to work out the work schedule and Little Bug sitting schedule with DN and MA.

Hopefully, we will have a positive outcome from today's meeting with Birth to Three. Stay tuned.