Small Steps - Big Leaps

Lately Robbie has been making incredible strides in his speech. When we talk about speech with Robbie it has nothing to do with how many words he has or pronunciation but everything to do with functionality. Typically when he is evaluated we are told that his vocabulary is beyond the norm for his age. But what good is that if he cannot communicate his needs, express his feelings, or even get someone'
s attention and tell them something? 

About 2 years ago we read a study about Omega 3-6-9 improving speech in some kids with delay and autistic children. We figured it was worth a try and ordered it. Within a week or so of starting it his speech improved. Consequence? After the bottle ran out we never got around to ordering more for about 8 months. Again when we started his speech improved. Hmm interesting. We ordered a few bottles in a row then it got forgotten again. 

December 2014 I was scanning a book at B&N and came across a chapter on autistic children having low cholesterol and how when it gets balanced out they see improvement. We asked the Dr about checking his levels and she said if he was getting omegas then it should be fine but she would check if we wanted. We decided to wait but it reminded me of the oils again so we ordered. It's been about 3 weeks and man has there been leaps of improvement! I have no clue what the science is behind it, if it's his cholesterol or some other thing being balanced out, but after 3 separate trials and each having marked improvement I think we will be sticking with it regardless of the cost this time! 

In the last two weeks he has begun to regularly use Mommy and Daddy, telling us  to "come here," tapping on the arm to get attention (non verbal but functional communication), using Henry's name, telling us about what he has seen, asking for things he wants with greater ease and more specification. His negative behaviors have decreased and attention increased. I'm sure the latter will fluctuate but the ABA evals always said his behavior issues are verbally based. Of course we are also heavily working on his speech and making say things as he should but that is always a repetition of what we say. It's working though and I think the oil is boosting his ability to put into practice what we are teaching him.

I had happy tears twice today and wanted to shout out for joy (well I did once). This morning when we were waiting for OT he walked up to one of the receptionists desks, peeked over and said, "Whatcha doin?" This was after we had said hi to her). She replied that she was working and asked him the same. He said something then walked around the counter so she could see him and said "See shirt" while puffing out his tummy and rubbing the dino on his new shirt! He's NEVER done such a thing!!!! He then walked over to the other receptionists desk and looked for her but she was not there. He looked over at me and said "She not home." Meaning she wasn't there. That's the first time ever that he has made any sort of comment of that type! 

Yellow chalk on a tree isn't the easiest to see. 

The second time was this evening as we were playing outside. Lately we've been making a big effort to not let him stay in his own world but to teach him how and force him to play things like a typical kid does. We were in the corner of the yard that he calls the forest when Henry ran over with two pieces of chalk in his hand and started drawing on the swing set. I took one piece and Robbie's hand and had him make his name. The day before we had drawn a bug with a smiley face, his first experience that I know of with making a smiley face. Well after I let his hand go he ran back to the forest and pointed up at a tree and said tree face! (there is a tree on a street nearby that has one of those fake faces on it and he has been obsessed with trees having faces ever since he first saw it). I said yeah you can make a face on the tree and helped him with two eyes and the mouth. He was SO excited! He ran to another tree and made two eyes and a mouth, he pointed them out saying "Eyes. Smile." I shouted for joy!!! He has NEVER drawn something purposefully before!!! And then he talked about it! He was on a mission at that point to put a face on every tree or branch he could reach in his forest. Then he spotted the trees on the other side of the yard and yelled as he ran "Come on mommy! So many trees!" I was in shock. I know you are probably thinking I'm nuts but this is really major for him in so many ways. Functional language by 6 is one of the major indicators of being able to lead a typical life. And he's just so happy. He says that all the time now too :)  He will smile at us for a minute then say "I so happy." When Chet got home I told him to show his Daddy what he had done and for the first time he responded to that statement by telling Chet to look as he pointed out his faces. 

All the oaks, the palms and even the maple got smilies

My heart is overflowing. I cannot express the joy I have over these typically small things that are just so big for him. 

Dental Fun

Today was Robbie's second and Henry's first visit to the dentist! Robbie did amazing, like he did last time. His dentist is simply wonderful. His front lower teeth are beginning to loosen so the Dr said to keep an eye out for that in the next year or so. Apparently when they start to loosen the back molars start to show up too so we are on the watch for that as well. Robbie's teeth are in great shape!

Henry, poor Henry hated it. Robbie smiles and laughs the whole time but Henry screamed the whole time. Not exaggerating. The. Whole. Time. They worked fast on him and he was done in about half the time as Robbie. His teeth also look great but his upper jaw not so. The upper jaw should be in a straight line. His left side slopes down. Dr Mike said, "It could cause speech problems." We told him that he was in speech and he said it makes sense and that he may not be able to form words properly with the left side being weaker because of how it is held and that Henry obviously uses the right to chew on things more and strengthen that side. So I called the ST and let her know so that we can be working on strengthening the left side and do what we can to help now. The dentist also said orthodontics will be in his future to fix it. Poor kid. It could have been caused by the way he chews his paci or it could have always been that way and he chews his paci like he does because of it. He doesn't know since he's never seen him before. However we are to wean it from him slowly.

By the time we left Robbie had every person there wrapped around his little finger and Henry had his arms wrapped around Daddy's neck and did not want to let go. He was very upset Chet was not coming home with us! A trip to the pet store set all to right with him :)

Another Feeding Eval

Yet again we did an evaluation for the feeding center. It had been a year since the last and they needed to assess any progress and make a game plan for the center. This was by far the most informative eval we've had there to date. Robbie did well, better than he ever has, in spite of it being during his nap time. 

 Happy climbing trees!

What it comes down to is that if insurance gives the thumbs up, and barring any sickness, we will be in it in three weeks. They gave us a possible schedule and more info on what it will be like which was nice and let us know it will be four instead of five weeks. They also gave us an impossibly long list of things to be working on in the mean time! 

With in the three weeks Robbie also has to have another upper GI endoscopy, lower small endoscopy, and a battery of blood test. It will all be done at one time when he is put under. They are searching for food allergies. The Dr is pretty certain that could be the reason he is too light weight for the amount of food he is getting and perhaps the reasons for his eating behaviors. He also believes Robbie is not digesting his food properly. In doing this they are trying to make the feeding intensive as successful as possible by addressing any possible issue that could be affecting his eating. 

Wore out after the eval. Rare for him to sleep in the car.

Please be in prayer for everything and his health in the mean time. If he is sick they will not let him start. 

Thank you!