This blog has been so neglected, so I am going to try to update everyone as to what has been going on in our lives for the past few months, and then hopefully keep everyone updated on the good, the bad and the ugly on a more current basis! And sorry in advance that this is a little long - but there is lots to update about and I don't want to leave anything out! Writing has always been so therapeutic for me, so this will be beneficial in that regard - but this will also make it easier to keep friends and family updated and in the loop! So here goes!
After Madilyn's 18 month check up, we felt like she wasn't making many new sounds and though Carter was not speaking all that much either, he was at least attempting new sounds and trying to say words. After a gentle nudge, Rob and I thought it would be a good idea to revisit our pediatrician again and at the beginning of the year we let him know about some of our concerns.We were given several different referrals and suggestions, the first being speech therapy. This route would be considered private therapy, and we were excited to get her started. We took her to Kingwood Speech, and met with the owner Elizabeth who conducted her evaluation and did agree that Madilyn would greatly benefit from speech therapy twice a week for 30 minute sessions. Not too long after that, we also did an OT evaluation at Kingwood Speech, and found that Madilyn would totally benefit from having that twice a week as well because she has always been very much a sensory seeking girl. Another service that we started was ECI which is a state program for babies under three who have delays in one or more areas of development. Madilyn had a few delays, and qualified for services, and so we started that once a week for 45 minutes. During that time, we have someone come into our house and play with Madilyn and help her work towards the goals that have been set out for her. While all of these things were happening, we were also filling out a massive amount of paperwork for Madilyn to be tested at the Autism Clinic downtown. We were on a wait list for a few months before they called and told us our appointment day and time. The initial appointment was just under 4 hours - with a little break in between. Madilyn was given an evaluation while I answered lots of questions with the psychologist. Later, we were taken into another room where they observed how she played with toys and how she interacted with other people. We had another appointment at the same clinic but this one was with a developmental pediatrician and was only about 2 hours - but it dealt with a lot of background information and patient history. So Madilyn didn't really have to do too much at that appointment. Just a few weeks later, I went in to get the results and that was probably a day that changed my life and won't be something I'll ever forget. Rob was there in spirit - but on speaker - because he stayed home to watch the kiddos. As you can probably guess from what I just said, the doctor said that she does indeed think Madilyn is autistic. And yes, of course, Madilyn is perfect and beautiful and I love her just the way she is.. But it was still hard to hear.
We had a few more tests done recently just to make sure everything else is looking normal. We did an EEG - which was lots of fun! We had to wait a little while in the waiting room before they took us back. And then once we got back, they had to connect 30 some odd wires to Madilyn's head. And on top of that -- they needed her to nap for about 10-15 minutes. Yeah. Not fun. But thankfully, after a bit of fighting it, she did end up napping for a little bit and they were able to get what they needed so that we wouldn't have to come in another day to do the test again. We got the results back pretty quickly from that, and they said everything looked normal. They were just making sure things were firing off like they should be, and wanted to make sure there weren't any little seizures going on that we weren't seeing. So, that was good news!
We also just recently had to go downtown to Texas Children's to do some blood work for genetic testing. That was another long wait - which was pretty annoying because we had already talked to insurance prior to going down there, but that didn't seem to matter. Thank goodness I brought my ipad because there is no way my kids would have been able to entertain themselves for such a long wait. (As a side note, my Uncle Bill has been going to a good portion of these appointments with me because Rob does still have to go to work, but having some extra support for me has proven to be pretty beneficial!) We did finally get called back after what seemed like forever, and Madilyn did pretty good during the blood draw. It did help that I had my iPhone with her favorite Daniel Tiger game playing during the blood draw because she was a little bit more distracted.
So -- as far as treatment options for autism, there really aren't lots of options. Autism is still something that is being researched and understood. And we as a family are still learning and reading up on things we can do to help Madilyn in the way that she needs it. But, the best plan of action for most kids with autism that has proven to be the most beneficial and with the most results is ABA therapy. ABA stands for Applied Behavior Analysis and the therapy is super intensive therapy.
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ABA is simply the application of behavioral principles, to everyday situations, that will, over time, increase or decrease targeted behaviors. ABA has been used to help individuals acquire many different skills, such as language skills, self-help skills, and play skills; in addition, these principles can help to decrease maladaptive behaviors such as aggression, self-stimulatory behaviors, and self-injury."
Currently, Madilyn is getting 20 hours a week of ABA therapy at Spectacular Kids. They would like to increase her time eventually, but because she is only 2 1/2 and still takes a nap, it is hard to get more hours in. So she is going Monday through Friday from 8:30-12:30. She works one-on-one with a few different people during her time to get her used to having to work with different people. We just started her fourth week of ABA this week, and she is already making so much progress with the programs and goals that they have in place for her - which we are thrilled with! Of course, that does mean that things are going to get a little more challenging because she has completed so many of her goals and new ones will be made, but we have all the confidence in the world that she will be able to work just as hard to get those new goals mastered. We are so thankful that our insurance company specifically mentions ABA because it is not the cheapest of therapies but it has already proven to be so helpful to Madilyn. Rob and I actually got to go in for some parent training on Tuesday where we got to work with Madilyn and her therapists on some of the things she has been working on there. And then this morning, I observed her through a mirror and saw her working hard on completing a variety of tasks and with minimal fussing. It's just amazing to get to see all of the progress she has made in this short amount of time, and it is exciting to think of the things she will be able to accomplish in the future because of her hard work!
Carter has been a champ during this process. He has come out of his shell so much since the beginning of the year and he is just so much fun to listen to and laugh with. When we first took Madilyn in for a speech evaluation, we mentioned that we might want to have Carter tested just to see if he had a delay of any kind. He was pretty close to average, but we thought that going to speech once a week would really just boost him and push him towards being able to communicate better and more frequently. He has made a lot of progress working with his therapist, and know that it's only going to get better! We have loved getting to go on play dates with my Mom group, and since Madilyn has started going to therapy in the mornings, Carter and I often have a little bit of time to spend together which has been nice. I have a friend who suggested going to a MOPS group (Mothers of Preschoolers) which is a great program for Moms that also includes childcare! Woo! So, that is twice a month on Wednesdays from 9 to 11:30. Carter was a little hesitant at first, but since we have been a few times, he is definitely getting more used to it. I also joined a gym recently which has childcare as well -- and bit by bit, Carter has adjusted pretty well. He isn't always the happiest when I drop him off, but we have a little song that says "Mommy comes back" and he repeats it with me in the mornings so that when I drop him off, I can remind him that I'll be back. Of course it's a little hard on him because he has been at home and not in daycare of any kind, so I am really proud of the progress he has made in the last couple of weeks. That being said, Rob and I just this week enrolled him into a Mother's Day Out program that meets Tuesdays and Thursdays from 9 to 4. His first day was Tuesday, and while it was a bit of a hard day for him, I think that with him having some practice with me dropping him off and coming back, it wasn't quite as hard as it could have been. We really wanted him to have the chance to be around other kids to be more social, and to just have fun and do other things that I may not have thought of. Plus - it does give me a little break two days a week which is awesome!
So. That's been our lives for the past few months. Things have definitely been busy, but sometimes I do think that staying busy is what keeps us going. Like I said, I will try to update this more often - especially with progress updates on both of the kiddos. And in the meantime, send us your thoughts and prayers for those days when things aren't as easy as we wish they would be! All in all though, I do consider everyday a blessing even when it is rough, and wouldn't trade these two kids for anything!
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| Madilyn after her first day of ABA |
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| Carter's first day at in childcare at MOPS! |
