Tuesday, January 17, 2017

My Little Cricket’s Delay: Week 1 – Starting Sequential Oral Sensory Approach to Feeding

Yesterday we started our first session of Sequential Oral Sensory Approach to Feeding (SOS) food training program. Based on the long list of food that my Little Cricket eats, and our targeted goal foods, our occupational therapist crafted a list of foods to start our eating program with. Apparently the first three weeks consist of foods that are easy to eat and that are mostly preferred. They also happen to stay pretty much the same to build trust and for the child to get used to the play focus with the food. Our list for today was pretty simple and almost all of which I thought my Little Cricket would eat.

The theory is to focus on positive eating. Any association with the food from tolerating in his eyesight, to tolerating it on his plate, to touching it, to licking it, to trying it. There are actually 27 steps between seeing a food and actually eating it without any issue. I am really hopeful that this works.



List of foods to bring
- Peanuts
- Peanut Butter
- Honey Bunches of Oats
- Cheeto Puff Ball
- Carrots cut into slices
- American Cheese Slice
- Dried Mango
- Naked Juice: Mighty Mango

The session went better than I thought it would. My Little Cricket had a good time interacting with the food and playing the games that the therapist created. As I suspected he didn’t eat the cheeto puff ball, the carrots or the juice, all new things for him. But at least he did allow them on the tray and he even interacted with them. The therapist was happy with the session and I am just trusting in the process.

I just cannot wait until the end of the program and my Little Cricket is hopefully eating more.

My Little Rose: My Little Rose: 37 Weeks Old

Oh my Little Rose, you are so much spunk and spice and laughter and joy. I don’t know how I got so incredibly lucky to end up with two easy going laid back kids but I am so thankful each and every single day.















This week you started clapping your hands. I was changing your diaper and you were just cooing and talking away with me. And then clap clap clap. I was so excited for you. Of course I didn’t get to record it this week. But I did get some baby giggles. Everyone loves baby giggles.

You are still working on sitting up. We practice multiple times a day but after a half a minute or so you tend to topple over. I have to be right there to help because you also have yet to learn how to gracefully fall, aka not crack your head on the floor.




Your brother is starting to love on you more and more. He is offering you your binkie or bottle. He is climbing into your crib to comfort you. He is handing you toys while you play in the tub. And you are just loving him right back. My heart bursts with JOY to see you interact together so well.




You are eating better which is awesome but you are also way more interested in feeding yourself. Unfortunately your coordination with a spoon leaves a lot to be desired. Practice of course will help but then there is also the fact that mealtimes really can’t take an hour. So we opt for a one spoon for you, and one spoon for mommy approach. At least every other bite is making its way into your mouth… sort of.







Monday, January 16, 2017

When it Rains… It Pours

This was probably the worst weekend ever. Mr. Rogue left on a quick visit to surprise his father for his 70th birthday. Being home alone with both kids is hard enough but on top of that I got SO SICK. So I am home, alone with two kids and I am so so sick. But to top it off my Little Cricket was the sickest that he has ever been. He got a concussion which scared the ever living daylights out of me (he is now totally fine). And then a few days later came down with a monster cold and fever.

It then rained all weekend which fit my mood perfectly. Thankfully the baby still sleeps all the time. And since we don’t give my Little Cricket the ipad often we just cuddled up in bed with that little box of joy and light and both vegged.





After a few days we were feeling better, and we were all so sick and tired of being inside so we headed to the park. We didn’t last long, we lasted only 45 minutes. We were all happy with that, sad as it was.








A Gift for Me

All the running around I do, all the work I have done, all the hours and time and I decided today that I needed a little gift. I wanted something NOT my diaper bag, something quick and easy that could hold just my keys and wallet and phone. So I found this adorable little Marc Jacobs plum purse that I adore.



And then since I was buying things that I wanted/needed I decided that my car needed a higher level of organization. Now that I am running all over town for therapies all day I found this busy life organizer for the passenger seat of my car. That way I have easier access to so many things on the go.


Sunday, January 15, 2017

My Little Cricket’s Delay: JASPER Mommy and Me 8: Programming for Joint Attention

Joint attention is one of the most difficult things for kids with ASD to achieve. It is important to know your child’s strengths and weaknesses and to fill in the parts that they may be missing.

- eye contact
- gesture (point, show, give)
- language
- affect and facial expression

During JASPER we want to always model joint attention and gestures, pepper it in with the play as much as you can. To help facilitate joint attention you can use several tools like high affect, being goofy, or playful obstruction. When engaged with the child you can offer prompts like ‘can I have a turn’, ‘give it to me’ or offering a palm out gesture (give it to me). If you catch a subtle gesture, shape your child’s gesture or interaction. For instance many ASD children will show something to someone but face the object toward them. To help shape their gesture you can physically help direct and extend their arm to show it to you.


My Little Cricket’s Delay: All This Paperwork

There have been so many challenges becoming an autistic mom. My old life didn’t get easier because this new life needs so much more work. I already felt tired and drained before our diagnosis. But no one has time for exhaustion right now. The thing I hear over and over and over and over again is that early intervention is key. It seems to be one of the few general statements about autism that everyone agrees on. But 40 hours a week of one on one therapy with an adult seemed so intense. After all where is the time for play, where is the time for a child to be a child. Where is the time, autistic or not, to have some space to just be.


First and foremost my job was to read as much as I could and talk to as many professionals and parents as I could; because I knew virtually nothing about autism. What I have found is that no one can tell me what causes autism, how to best help and autistic child, or what child will get better and which will be classified as low functioning. Instead of concrete answers I have found a sea of opinion, speculation, guesses, data, advice, experience and information. The challenges I face are multifaceted. I have to:

- emotionally accept the label and move forward to getting my son help

- research, research, talk to professionals and doctors, research, more research, get multiple assessments done, and more research

- learn my child’s core challenges inside and out, be able to describe and understand the how and why he does the things he does

- research, research, talk to professionals and doctors, research, more research, get multiple assessments done, and more research

- take the core list of my sons challenges and decide on the types of therapies that would help with that list as well as the therapists that have the experience and training to help my son, AND people that I can rely on and trust, since these are the people that I am trusting my precious heart too

- research, research and more FRIGGIN RESEARCH, interview therapists, call therapists, look at clinics, visit preschools, visit special preschools, interview more therapists, ask people’s opinions, ask other autistic parents opinions, get assessments, get more assessments, join support groups

- settle on team members slowly as I find them and then begin to learn all the various therapies so I can apply them at home to get the best results

- question my direction, analyze how my son is doing, help him adjust to a whole new lifestyle, adjust myself to a whole new lifestyle, drive, analyze, research, learn and grow

- deal with insurance, deal with the schedule (my normal life schedule, my sons new therapy schedule, and all the therapists and preschool schedule), deal with the paperwork, deal with the information, deal with the timesheets and who is doing what on any given day

- the research, more research, my eyes and head are spinning with research.

- fight with the insurance company constantly to get coverage for the therapists that I found and who are at this moment helping my son with my private funding since no one has time to wait MONTHS for insurance to get their act together

- Start work on the IEP, need to find a preschool, typical or special education, weighing options, research, research and more research

One of the biggest things to work on, and what this post is about, is the massive amount of paperwork and documentation that needs to be addressed. I am a visual person, and I like things organized. Several things helped so I can be sure not to miss something. I had a large visual schedule in color coded blocks that I could hand out to all our therapists. It helped me see where our down time was and helped me identify windows of time for the therapies I still wanted to add. This schedule is still miss our 6-8 hours of ABA therapy. I am still searching for the right therapy.


I also had a simple daily calendar that I marked which therapies we actually had on that day, which were paid by us, which were paid by the regional center and eventually I will put on this what insurance reimbursed (when that ever happens is beyond me).


I also kept a separate timesheet for each of my therapists and my sitters. I wanted to know the hours they were working and how much we were paying them per hour so I could double-check when the timesheets came at the end of the month before I paid our vendors.


I kept a list, along with copies of all the invoices, of the documentation that I sent the insurance company. It has now been three months and I have yet to see a dime from them. This is getting very expensive.


And then there is the therapy log. Brite Kids, the clinic based preschool my Little Cricket attends gives me a daily and a weekly report of what he is doing at school. But I knew I also needed one for the rest of the therapies we were doing. This log is only two or three short sentences per therapy, but it reminds me what happened and as time progresses will allow me to see how far we have come.



Lastly I printed out every single assessment we received and have highlighted, corrected, and added notes onto them about what I think about the assessment. I need to know these assessments backwards and forwards, but more than that I need to also know what I agree with and what I don’t. Something everyone tells you in the beginning, is that you will be your childs greatest expert. And as terrifying as that was to hear then they are right. These professionals can only assess your child in a snapshot of time.

With everything bound up in this binder, I have my Little Crickets full profile of information at my fingertips. I am sure I will add and modify as time goes on but I wanted to share my organization. I didn’t find hardly any help on the parent side of shuffling through all of this. Maybe this will help someone else.