Getting No Where Fast

ABA:  Nothing is happening. Our attempts at various options have fallen through the cracks. Still trying to get the insurance worked out. 

Improvement: In spite of the lack of ABA he is still doing well and his speech is improving regularly. Today, while at Down Town Disney, he even pointed excitedly at something, grabbed my hand, and said "Come on! Let's Go!"  I about burst into tears at such a complete statement combined with his interest and excitement in the characters around there. It seemed so normal. 

ENT: We went to the ENT (Nemours) on Friday to check into his tonsils. The Feeding Center thought it would be a good idea before we do the center. She said he doesn't readily appear to need them removed. The qualifications are 1. Having tonsilitis 7 times in a year. 2. Having sleep apnea. 3. Tonsils overlapping with a cough and sounding like Darth Vader. 
She said it did look bad as did his nose due to allergies. So we are to do a few things:
1. Start flonase.
2. Give that and his Zyrtec in the evening instead of the morning. 
3. Have a sleep study done.
The hope is that the medicine will control the allergies and so stop the tonsils from swelling. If it does help they will then send us to an allergist to see exactly what he is allergic to so we can give him the meds only during those times. I hope it works! The sleep study because he snores and just to rule out the apnea. I don't think they will find anything. 

Keep the prayers coming! Thanks!

Prayers Please: ABA

We found out yesterday that due to insurance we have to stop ABA. Not only that but they are telling us we owe roughly $16,000 for the last six months. The money is the least of my problems. ABA has taken Robbie so far. His Sunday School teachers who only see him every few months just can’t quit raving over what a different kid he is. He has come so far, but has so far to go. It is breaking my heart! Several things will be taking place at this point.

1. I will be working very hard to take over the ABA therapy to the best of my abilities. I’ve been trained for 6 months but don’t know what to do once he has mastered what he is working on now. And it’s very hard to stay that disciplined without some sort of accountability but I must.

2. We will be getting in touch with the original ABA consultant that we had last year about this time. We are hoping that she will be able to come once a month or at least every 6 weeks to give me direction on working with him.

3. We will be fighting the insurance company on paying the money. Their reason for not covering it is that it is in-home verses in-clinic. According to Interventions Unlimited (the company we get ABA through) the insurance is billed the same regardless so there is no reason for them not to pay.

4. We will be looking for new insurance.

Robbie loves Amy and will definitely miss her. He will ask for her and not understand why she is no longer coming over. Poor kid.

Another thing in need of prayer is that we will be looking into having his tonsils removed. So just prayer in general for that process.

I have confidence that God can use this for good but am well aware we have a lot of work to do. Every time I think about his progress stalling I feel sick. All my complaints of our time not being our own and begrudging so many aspects of ABA are now plaguing me and I just wish I could go back and throw myself into it more. Please, please, please be praying for Robbie, us, and this whole situation. Thank you very much for reading and even more for your prayers! 

Henry's Speech

    As of today Henry is in speech therapy! Yep. It worked out great for us that he comes with me to Robbie’s ST and then Robbie goes to OT while Henry and I stay and do Henry’s ST. I know he is on the young side for speech but he definitely has problems saying words that one year olds should say with ease (he is 2 ½) and it’s best to catch these things early. He has a very hard time with pronunciation, even with simple words. There are no problems in any other area for him as far as we can tell. In fact he is rather advanced in several areas according to the testing.  

    Today went well so hopefully this won’t turn into years but be fairly short term. 

Not This Year

    We have prayed and prayed and prayed. Some of you have too. We have planned and fought for it but once again the Feeding Intensive is not going to happen this year.  We are two weeks from our start date. I am bewildered, irritated, dejected and crushed. Yet I have peace.

    Here’s what happened. The billing for the center is mostly done as 20 Occupational Therapy visits. In spite of what Chet was told when we bought the plan, the insurance is now saying we only have 35 covered visits. We have 4 left this year and then we have to pay out of pocket. Well the feeding center’s price per visit is extraordinarily higher than a normal one. We could go through with the four week intensive and then fight the insurance to get the money back but that leaves us with the risk of paying it all ourselves. Today we were told the total would be $60,000. Not a typo. Sixty thousand dollars. Yeah. That is too big a risk. Not prudent.

    What do we do now? We will wait until the new year starts and we have 35 visits covered again. Hopefully the insurance will not give us a problem about it and simply cover the majority of it. In the mean time we will start working with his Speech Therapist on getting more comfortable with foods and continue his oral motor exercises, etc.

    All my dreams for a more normal 5^th birthday and the holidays are flushed down the toilet. As I’ve said before his inability to eat a normal meal is the biggest hindrance to leading a typical family life, the hardest thing to deal with. So this is really tough to hear. Especially with us having been so close to finally getting in.

    Like I said at the beginning, though I feel crushed I have peace. I know this is the right choice. It would be pure foolishness to put ourselves that far into debt when a four month wait could leave us with no debt at all. I think God has been preparing me for the news. All week I have been thinking on Philippians 4:6-7. I’ve been reading and reflecting on like passages and just praying about it a lot. Well here we are denied our desires for the moment but I have peace. After all, we have been doing this for four years what’s another four months?!

    Please continue to pray that he has victory in these things as we continue to work with him on it while we wait.

ABA (More than you want to know)

This is a bit in depth of what's happening with ABA. So if you've been curious this will be good. If not just skip on down a bit or scan :)

Well, we have been doing this ABA stuff for a few months now. Crazy! Even though it’s been that long it is still hard to explain lol. I think because there are SO many components to it there is just no easy explanation. Essentially they evaluate the child and see where he is developmentally. The goal is to get him as close to neurotypically(NT) developing kids their age as possible. To get from point A to point B they break down everything that needs to be learned into infinitesimally small steps stacked in a hierarchy. So starting where he is they choose what will be focused on to get to the next step. For instance Robbie cannot have a conversation. He is basically at a labeling noun stage. He has to be able to label verbs (tacting) before he can carry on conversation (as well as other things). So we have 5 verbs at a time that we work on him labeling. In one day (3 hour session) the ABA therapist will run 3 trials per hour of each word, at least that’s the goal. So we will create opportunities for him to label “jumping.” We will jump on the trampoline, have dolls jump, look at a book with pictures of someone jumping, etc. Each time she will say “what are/is you, monkey, mommy, boy, etc, doing?” And he is supposed to correctly say “jumping.” If he does then yay! If he needs a prompt still yay but it is noted. She has to keep detailed notes on each and every trial. Whether it was independent, verbally prompted, physically prompted, not done, etc. In order for the skill to be considered mastered he has to get 80% independent first trials of the day, three days in a row. Once a skill is mastered we move forward with a new one.  Some stuff he has breezed through other things he has not. He has the hardest time working on flash cards. He gets bored and doesn’t want to do it once he knows how so he ends up not doing well because of compliance. Aside from the learning we also work on any negative behaviors that may pop up and how to help him learn to communicate whatever it is that he needs and we work on social skills (at gymnastics, with Henry, with friends, and by pretending to be peers).  All the while being sure to get the sensory stimulus he needs in order to focus and not just run around, and working in his occupational therapy and speech exercises!

            So the areas we are currently working on in ABA are: Receptive Language (5 words), Tacting Actions (5 words), Matching Non-identical flash cards (4), Intraverbal Fill Ins (personal info, 3: his last name, my name, Chet’s name), Intraverbal Fill Ins (4, i.e. “You drink from a ___.”), Problem Behaviors, Turn Taking, Play with Peers. He has mastered completely the entire Intraverbal Song Fill Ins! In essence we create opportunities to consistently practice all these things. Chet and I are to be doing this as much as possible “outside” of therapy as well. It really only works if it is done 24/7 and you take advantage of every opportunity that comes your way and put effort into creating more opportunities.  His therapist and her supervisor say he is blowing through it with amazing speed they haven’t seen before. To us it seems oh so slow. I can’t imagine how it must feel for parents when the child takes longer.

            Since starting we are hearing good reports from Sunday School, gymnastics is going well, others say they can tell a difference, I know we can. I was able to take both boys to the store today and have Robbie walk! This is a huge step for us, normally he has to stay in the cart as well as Henry because he runs away. This means we will be able to do more!

           

Other Robbie stuff.

1. It looks like we will be finally going into the feeding center soon! Insurance is being a hassle so prayers for that would be great.
2. We are looking into and forward to homeschooling next year. I was concerned about it since he is special needs but after looking into it there are many people who do and several organizations to help and even a legal group to help if the state gives problems with testing or other stuff. I may try some preschool stuff this year, not a lot but some because I just don’t really believe in school for 4 year olds but learning through play.
3. He is as happy as ever. Always a smile!

            Henry is doing well. His speech is improving but still not at a normal rate and he has big problems with pronunciation. Other than that he seems to be doing well. He loves being in the middle of all our activity and has more energy than the rest of us combined! He loves gymnastics and participating in Robbie’s therapy. He loves the therapist as much as Robbie does! He also loves snacks, snuggles, pretending, coloring, play-doh, Winnie the Pooh and Duplos. He ADORES being outside! He is just so very fun :)

Well, that’s all I can think of for now. You’re prayers are appreciated as always!

This and That

My it has been quite awhile since I updated.

Henry is basically healthy and happy as always! At his recent check up (2 year – HOLY COW!) he was somewhere in the 90^th percentile for height and 25^th percentile for weight. He is crazy active and clever, always getting into everything. He enjoys rearranging the silverware drawer, hiding various items in very weird places, building with duplos, playing outside, and “Mater’s Tales.” If he can get into it he will and if he can’t he will figure out a way. He can now get out of his bed, climb to the top of his tall dresser, open childproof bottles, lock and unlock the doors, and absolutely loves baking and cooking. Yet he still can’t really talk. He is a bundle of energy and fun for sure!

 I'm two!

 I love my Duplos.

Mini play-dohs fit perfectly in toilet paper tubes. . . .

Robbie is still showing steady improvement. Thanks to the few consults we’ve had with an ABA therapist he is now using words to communicate!!! I cannot express how wonderful this is and how much easier it makes life. He is still quite limited in what he says and in remembering to use them consistently but it is worlds better than just a few months ago when he used none at all to communicate!

At the beginning of the year we wanted to start Applied Behavioral Analysis. (ABA is typically administered one on one, in a program that is customized to the individual. It involves breaking down learning tasks into small steps, and teaching them over and over in a reinforcing way until they are mastered. It is the best-researched and most effective current treatment for autism, experts say.) At that point we could not afford it (read crazy-expensive) and had to figure out how to pay for it. Praise God for an intelligent husband and perseverance. We got Robbie on a new insurance and now we will be paying less over all even with the many many hours of therapy we will be having. So we start ABA tomorrow! We have worked 4 or 5 times with an ABA consultant and saw amazing progress just for those few hour long sessions so I am extremely hopeful that this will see a great improvement in him all around.  It is typical for an autistic kid to start off with 30-40 hours of ABA a week. No, that is not a typo. Fortunately Robbie is high-functioning enough that the maximum recommendation for him was 10 hours a week, we were able to procure 9 hours a week. It will be spread out 3 hours a day 3 days a week, with another day having his OT and ST. It typically lasts 2-4 years with intensity decreasing as you go. Another good thing is that ABA is in home. His therapist will be teaching Chet and I how to “run the program” consistently at home and away. That is all I know at this point. I really have no clue what to expect so I guess I will try and update when I have a better idea. All I do know is that it will be a HUGE adjustment for our family and part of me is dreading it. I am ecstatic, freaked out, worried, hopeful, fearful, happy and much more.

 Enjoying a bonfire with cousins.

Color matching with bugs.

On another note, we are still on the waiting list for the Feeding Difficulties Center. We have an eval appointment in April and then hopefully, not too long after that, will get into the program. He is now on all table food purees but not trying solids yet. I have been slack in the attempts.

 Sandbox!

 My men making dinner :)

Sea World with the Penguins.

As always prayers for all of it would be greatly appreciated. Thanks!