Andy's been officially diagnosed with Autism

It has been recommended to me by several health professionals to have Andy evaluated for Autism. I was told this would become more important around age 4 or 5, but the concern wasn't heavy at 18 months old, but mentioned to me. I recently realized that a lot more services could become available to Andy, should he receive a diagnosis of Autism, so I was interested in pursuing it, as he is approaching five years old.

My insurance company, Blue Cross Blue Shield of Michigan (BCBSM), has to have several things
happen before they will accept a diagnosis of Autism. Once all of these things have happened, a case can be presented to them for the approval of the need for Applied Behavioral Analysis (ABA) therapy. These things are: psychological evaluation, speech evaluation, and neurological evaluation.

The DMC Children's Autism center extensively interviewed me first, as part of the psychological evaluation, asking me "yes" or "no" questions about Andy's behaviors. A lot of the questions were, "since he was four years old, have you seen this..." Or they would compare when he was a newborn or toddler, compared to, since he was four years old. The next part of the psych eval involved a one-hour observation of Andy.

They wanted to see if Andy would share things with them. He did not. He keeps to himself while playing. They wanted to see if he would respond to his name when called, he does not. They mimicked having a sick baby in the room to see if he would show compassion or concern, he did not. They tried to see if he would try to draw them into his play, like extending toys to them, giving them something if they asked for it, would he look at them to want them to come join his play, he did not.

They met with the speech pathologist, and neurologist and looked at all the psychological reporting and observations. They had me come back in for a feedback visit. They told me they feel that in addition to Andy's mental and physical impairments, that he also has Autism. They said that it can be difficult to tease out what behaviors are from his developmental delays, and what is from Autism.

Andy also exhibits lots of hand flapping by his face, putting objects and his fingers to his mouth, covering his face due to loud noises or when he's frightened, and they feel these behaviors could be from the Autism part of it. He has self-injurious behaviors, such as head banging, and face scratching. He has frequent meltdowns, at any time , and at any place. He doesn't show awareness of what is socially right or wrong.

I have never had an opinion on whether Andy has Autism or not. I went through with these evaluations, because I want Andy to receive the maximum amount of services that he deserves. Now that he has this diagnosis, he can possibly start to receive intensive ABA therapy, which has been shown to very positively help children with Autism, developmental delays and other disorders.

The paperwork they sent home with us also shares several Autism websites and techniques that can be used to increase Andy's communication with us. I will list these below. The PhD delivering the news told me that one of the main goals of the ABA therapy is going to be to increase communication. Other goals include: increasing peer-interaction (responding to children, interest in peers), socio-emotional reciprocity (offering comfort), play and leisure skills (imitation, pretend play), shared enjoyment and offering to share. I cannot schedule any ABA visits until my insurance company approves it, which will take a couple weeks.

The documentation will also be helpful to submit to the school because it states that according to the American Academy of Pediatrics (AAP), for young children with a diagnosis of the autism spectrum the AAP recommends:

• Intervention consist of a low student-to-teacher ratio to allow sufficient amounts of 1-on-1 time and small group instruction to meet specific individualized goals. 
• Provision of intensive intervention, with active engagement of the child at least 25 hours per week, 12 months per year, in systematically planned, developmentally appropriate educational activities designed to address identified objectives.
• Inclusion of a family component (including parent training as indicated)
• Promotion of opportunities for interaction with typically developing peers 
• Ongoing measurement of child's progress toward objectives
• Incorporation of strategies to apply learned skills to new environments and to maintain functional use of these skills.

For further information regarding the American Academy of Pediatrics' recommendations on treatment of children with ASD, please go to:
http://pediatrics.aappublications.org/content/120/5/1162.full.pdf+html

Here are the web resources they shared with me for Autism:

http://www.autismspeaks.org

http://autismallianceofmichigan.org

http://autism-mi.org/

http://michigan.gov/autism

http://www.asatonline.org/  (Association for Science in Autism treatment)

http://www.ninds.nih.gov/disorders/autism/detail_autism.htm   (NIH Autism fact sheet)

Speech sounds are improving, Andy's been drinking from a cup

Over the past few weeks, we have slowly been hearing Andy babble more and more. It used to be extremely rare for me to catch Andy babbling. His choice sounds are ma-ma-ma, or ba-ba-ba. For the
last year, the only babbling we would hear Andy doing was usually in the bath tub. Andy's speech therapist told me that being immersed in water is very stimulating for kids, and this is why we see the vocalization kick up when they are in the tub.

Still it was rare, I would even try to catch him on video babbling and couldn't get it. By the time I put my phone on the video setting and hit record, he would already be done babbling. Recently, I've decided for the tenth time to revisit trying to have Andy drink from an open cup. I filled a dixie cup to the top with water and put it to his lips. He actually cupped his lips this time and got a sip.

We celebrated and told him what a big boy he is. This motivated him to want another turn. Lately, every day, I've been trying to offer him a cup to drink from at least once a day. Andy's current preference for drinking is a cup with a straw in it. He will not lift the cup. I offer him drinks when I think he's thirsty, or if he eye gazes at the cup. Sometimes he will overreach for the straw cup and knock it over, and I take this for him wanting a sip.

According to a feeding (oral-motor) therapy presentation I read by Renee Roy Hill,SLP, it is important to offer kids different methods of drinking liquids. Different facial muscles are used for drinking from a straw, and drinking from a cup. The muscles of the tongue have to be used differently as well with different drinking methods, and this is important in children learning to develop different speech sounds.

I even learned from this presentation that choosing the right cup can be important. I noticed that Andy only likes to drink from paper cups right now. He doesn't care for the feeling of glass or plastic cups. Hill also suggests that having your child start out with drinking thicker liquids at first is better. She notes that thickened liquids are easier for patients to control, when learning a new muscle skill. You can then move to thinner liquids as their skill level increases. I noticed that the chocolate whole milk you can buy in stores is quite thick, so I am going to use that, plus maybe some smoothie mixes.

The last few weeks have been exciting for us, because Andy is now babbling at all times, and it is not just limited to the bath tub. He wakes up saying "ba-ba-ba", as if he is so excited to get all these new sounds out. He babbles more in the car, and around others. It seemed before that if you interrupted his babbling to even say,"good job talking", then he would stop doing it for the day. Somehow though, he is becoming less shy about it, and even babbling when I have him in public.

I really do feel that us offering Andy the cup to drink, has been helping with him wanting to babble more often, and his ability to babble. However, Hill notes that feeding therapy should not be the only thing used when working on speech production. She stresses that oral-motor therapy/feeding therapy should be used together with other speech therapies to continue to gain speech production from the patient. Andy continues to receive speech therapy twice a week at school, along with my feeding efforts at home. We seem to be seeing results!

Revisiting self-feeding

Andy will be three years old in two and a half months. I would love to see him put any kind of food into his mouth. He won't even lick his fingers with yogurt or whipped cream on them, nothing. Lately, we've been seeing him put toys in his mouth, so I thought I should revisit self-feeding.

Every now and then, I try and see if Andy will hold a fork or spoon with my help. I put his hand on it first, but then he usually protests right away and pushes my hand away forcefully. He would also immediately drop the spoon, and not let me bring his hand anywhere near his mouth. Every month I revisit it, and its always the same.


Today, he is grabbing the spoon when I present it to him with food on it. Oatmeal and yogurt have been what we're working with today. He is maintaining the grasp, and letting me put my hand over his hand without resistance. He is also letting me lead the spoon up to his mouth, then opening his mouth and eating the bite. This is HUGE. He always pushes the spoon away in anger, and refuses to eat it.

I told him how proud I am of him for eating with a spoon. He seemed to like the praise. I had him eat almost his whole bowl of oatmeal this way, and later for lunch his yogurt. Constant repetition is what the therapists always say. So, I've got to start doing this more and more. I always see regression with him too, so I am awaiting that resistance again.

He also picked up a large cracker off his tray and brought it to his mouth, which was SO awesome to see. I have been waiting so long for this. I finally feel like, wow, maybe he will actually start to grow out of this infant phase! Thank God, I can't wait.

Just feeling upset today

Just feeling upset today about Andy not having all the opportunities that other children get to have at this age of almost three. He can roll around, but cannot get into a sitting or crawling position on his own. It makes me so angry sometimes, I just have to let it go, so that I don't go crazy. It's also very hard to be around people, especially family members with normal kids, when all they want to do is complain about their kids.

I don't know what the future holds for Andy, so I can't get too upset for what I don't know of yet. I just try to have joy with the things he loves right now.

Like listening to music.

And going to school.

This is just such a difficult path, I feel that I have to think differently than other parents, in order to keep my sanity. And just have faith that everything will be okay.

Hard time today

We have been sick in my house, first Gabby, then Andy and now me. Right now I am feeling my worst, plus Andy is very irritable today, I think from teething. He is crying a lot, and trying to touch a back tooth that hasn't broken through. To make matters worse, my daughter cries almost every time that Andy cries. She says it annoys her, and she is tired of hearing him cry, which is understandable. So, I have both of them crying, and I am really sick, achey, can't breathe, lightheaded, horrible.

By the grace of God, I get both of them to take a nap, and I too get to rest for 40 minutes or so. Then the lady from the Michigan Children's Special Health Care calls me. She tells me that the doctor has reviewed Andy's records, and although the microcephaly and Corpus callosum underdevelopment are there, they just don't cover developmental delays. I responded "Andy isn't simply just a typical kid who is a year behind and will soon catch up, he is severely impaired" and started crying. She explained that they only cover "medical needs", such as if he needed medication for something. They don't cover therapy, because of problems with the brain, which is leading to developmental delays. She says downs syndrome isn't covered, but a heart defect from the downs would be covered. The heart defect is a medical reason for coverage, whereas severe physical and cognitive impairment isn't a medical enough reason.

I am still so angry and am crying about this. When my husband got home, all I could do was cry. He was kind enough to take the kids to grandma's so I could get some rest. This is such a difficult time in my life.  I for the most part enjoy it, but I feel so sad today. I shouldn't have gotten my hopes up about them helping us. Them not wanting to help Andy just breaks my heart. I feel like he deserves so much, and I want him to have the best shot possible at having a normal life.

He's been so frustrated lately, and can't communicate with me. It is so painful to watch him struggling so hard all the time. Amidst all this pain and sorrow, I feel so lucky to have my husband. He is being really good to me and our family. He is working really hard for us, working two jobs and busting his ass, so that I can stay home with Andy.

I continue to pray for Andy's advanced development and happiness. His birthday is approaching, and that is hard as well, because he will be two, but is still so helpless. I really feel like we can still be a happy family, and find ways to make Andy's life enjoyable, but some days are more overwhelming than others I guess.