Sunday, August 3, 2014

Our New Normal: Caleb's Diagnosis

The doctor looked at me, "How far along were you when he was born?"

"27 weeks, 6 days. I carried him as long as I could."

I bit back tears as the doctor confirmed what we thought might be the case. Something was off with Caleb, and it wasn't getting better.

I started going through the what ifs in my head:

  • What if I had stayed more horizontal during bedrest?
  • What if I had laid on my left side more, even though the TV in my hospital room was on my right side?
  • What if I had eaten more protein and gained more weight?
  • What if I hadn't had the panic attack that set off my labor again, and ultimately caused me to deliver the kids a few hours later?

I looked at my son, as he went back and forth between playing quietly with therapy toys to spazzing out for no reason. I knew it was coming, but it still hit me in the gut.

Caleb has autism.

It's been about 10 days since we got the diagnosis that Caleb is on the spectrum. A good friend from church referred us to their Developmental Pediatrician for an evaluation, and we were blessed to get him in really quickly. The doctor spent several hours (!!!) with Caleb, Sean, and I in a therapy room, observing Caleb's behavior. I didn't know that doctors were willing to give patients that kind of time anymore! Dr. Hoffman is a fantastic doctor who spent a lot of time working in a NICU Follow-Up Clinic before moving on to private practice and specializing in developmental issues. In other words, he knows his stuff. By the end of the evaluation, he diagnosed Caleb with mild to moderately severe autism with possible apraxia of speech.
We saw this coming, or we wouldn't have pushed for an evaluation. Caleb has much more significant delays than his siblings, particularly in the area of communication. Dr. Hoffman told us that prematurity is directly linked to an increase in autism. *sigh* I realize that it's not obvious just from looking at pictures on our blog, but we really struggle.
Caleb had a rough start to preschool in March, which was understandable, but he improved over the next two months. Then in late April/early May, he started regressing. During summer school, he actually escaped from his classroom without his teachers noticing.

When we try to leave the house for outings, it also is really difficult. Trips to the zoo end up having our family split in two: Sean and Caleb go off so that Caleb can cope, and I have the other three kids. And then we end up leaving wherever we are early because he has a meltdown.

Communication mostly consists of crying, pushing, or pulling us to items. No pointing, and almost all of the language he does have is either rote (like counting to 10) or echoing (like saying, "sorry, sorry, sorry"). He has maybe 2-3 words that he can use independently in a conversation. He gets so frustrated and angry when we can't understand what he wants, and it just breaks my heart.

And taking his lovey to wash it? Two hours of screaming and crying while that doggy goes through the washer and dryer.

There are a myriad of other symptoms that he has as well, but those are probably the most disruptive to our family life.
So what are our next steps? Early intervention is key for kids like Caleb.
  • He has been in therapy since he was 6 months old, and has been in speech therapy for the last 18 months. We are continuing his therapy through the school district where he receives occupational, physical, social/emotion, and speech therapy. We requested a one-on-one para from the school at the end of last year, especially since he escaped, but we were denied. We did manage to increase his speech therapy from 60 minutes a week to 90 minutes a week. And we are for sure going to continue to call meetings with the school district if we feel that it is in his best interest.
  • We are also looking into additional therapy outside of the school to see what our options are there.
  • The doctor has Caleb on a DHA supplement (which he HATES), but it is supposed to help his brain work better. I've only forced it down his throat once, but I need to do it everyday. *sigh* Poor kid!
  • I know it's weird, but we are also using some special essential oils to help support his ability to focus. We feel like if we can help him focus, maybe we can make more progress faster? Caleb rarely smiled until we started using these a few weeks ago. Now we get smiles more often AND he seems to be more connected with what is going on around him. The photos in this post? I took those tonight. I have so very few photos where we can even see Caleb's face, that his smiles caught me off guard...and I LOVE them! I'm serious when I say that these are the best photos I have ever taken of him. Period. Something is obviously working here, so we are continuing those as well.

So pretty much, we are hitting it from every side while praying that God helps us find the best way to help him.
As a mom, I'm now readjusting my expectations again. I had expectations for the way we would have a family, but quads dashed that pretty quickly. I had expectations for how much fun we would have running around town doing things when they got to this age, and I'm having to adjust those expectations again. I'm struggling with feeling like this diagnosis isn't fair to our family. Not fair to Caleb who has already gone through more than most kids his age. Not fair to all of our kids to have outings cut short because of the delays. Not fair to us as parents who just wanted a normal family. I mean, we still can't leave the house without people taking pictures of us! And now autism on top of it.

I know that God has a plan and a purpose behind everything, and I'm holding on to that tightly right now. Of course, our love for Caleb is absolutely unchanged, and we certainly wouldn't trade our kids for anything, but I wish I had a better response to this new hurdle instead of feeling like a whiney butt. Right now, I'm just trying to come to terms with our new normal and embrace the way that our family is designed....autism and all.

22 comments:

  1. My heart goes out to you. Have you looked into ABA therapy? It has been a huge part of Bianka's success since her diagnosis just months after she turned 2. If you have any questions, I would love to help anyway I can.

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  2. You ask "What do I think"? Becca, I think you and Sean have been chosen by God for this job, empowered by His Spirit to do it, and are a wonderful family. You are a normal family, with all your hardships and trials, but also all the victories, which you so quickly give glory to God for. We don't determine what is normal for us, God does. God does not make mistakes, in the path He choses for our lives and our children's lives. God never said life would be easy for any of us, but "I know who you have believed in, and am persuaded that He is able, to keep that which you've committed unto Him until that day". I am sure your mom remembers singing that song. I love you and am proud of you. You and Sean are amazing!!! As are your beautiful children.

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  3. Rebecca - there is a lesson and value in everything! I am so proud of you for this post and for always embracing life's challenges - no matter how difficult!
    Caleb is very lucky that his parents caught on early and are already fighting for him to get him the resources he needs!
    Autism is a complex disorder, but I am confident you can handle it!
    ~JoLee

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  4. Hi Rebecca! I love reading about your family, and Caleb is so blessed to have the support of two amazing parents and three siblings! I'm sure you're getting bombarded with advice, but one of my coworkers has two children with Autism, and their family has had a lot of success with using the Specific Carbohydrates Diet. It was a minor improvement for one of the kids, but had a major positive impact on the other. Thought you might be interested!

    http://www.breakingtheviciouscycle.info/p/scd-autism/

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  5. Big hugs to you! What a blessing to find such a thorough doctor.

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  6. Thank you for your honesty and sharing such hard things.

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  7. Please get in touch with your local Autism Speaks office and get the "100 day kit". It is a wonderful tool to help you through this tough time!!! If you cannot get one please let me know and I will get you one. Look online at the Autism Speaks website for information. They are fully committed to helping families. Please contact me if you need anything. I have a nephew with severe autism and do a ton of work with our local office.

    Kristin Keithley keithley239@yahoo.com
    0

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    Replies
    1. Autism Speaks end game is abolishing autism via eugenics and they don't have any folks with autism working for them. I'd avoid them at all costs personally.

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  8. I know it's not the news you wanted confirmed but I believe that you and your husband were chosen to be his parent's because of your strength and unconditional love. My prayers are with you as you progress along this journey.

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  9. Dear Rebecca, Thank you so much for today's post. So often we can feel alone in our journey. I'm thankful that already several of your readers are coming along-side of you. May it provide you contacts, resources, tips and just encouraging HOPE that other families are making their way forward with a similar diagnosis. Loved seeing Caleb's darling smile in the picture you snapped today. Thankful for the progress you've seen recently. Praying for you & Sean as God continues to equip your family. He goes before you. And I'm sure you will be a great help and encouragement to others facing similar times. ((hugs)) & prayers,

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  10. I'm sorry to hear Caleb is autistic but commend you for being so aware of his needs & taking him to be evaluated. I wish my sister was more aware of her sons needs, it seems everyone in our family but her suspects he is autistic but she has an answer for every behavior. We all just hope his teachers in pre-k notice & encourage her to have him evaluated.
    Also I would LOVE to know more about the oils you are using. My boys are only 3 but I have one that is ridiculously hyperactive & bedtime for all 3 is always a nightmare. I could also probably take advantage of some calming oils for my anxiety :)

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  11. I am studying to be a speech pathologist and have used the Lindamood Bell program, Talkies, to help autistic children improve their receptive and expressive language. I would definitely recommend that you look into this program. It has worked amazingly well, even for an 8 year old, non-verbal, non-communicative (no gestures or pointing) individual whom I worked with. He said his first non-echolalia utterance 3 days into the program and he is now speaking in sentences and ordering his lunch at school. His communication no longer consists of sitting on the floor and crying while his mom tries to figure out what he wants.

    The program is based on the fact that we "picture" in our mind when someone is speaking to us. If someone says, "I saw a brown horse jumping over a white fence", we can see the brown horse jumping and the white fence in our mind. Individuals who struggle with receptive and expressive language do not "picture" in their minds well. Words seem to have no meaning to them. They may use echolalia, but may not use words to actually communicate their thoughts. Talkies teaches children that words have meanings and that they can "picture" in their minds and use those pictures for later reference when speaking, just like we do.

    Talkies is based on brain research. You can find out more here:

    http://www.lindamoodbell.com/programs/talkies.html

    If you have any questions about Talkies, I'd be happy to answer them.

    equestrienne2024@gmail.com

    I am not employed by Lindamood Bell, but I have been using their programs for 3 years now and they have made a huge difference in the lives of my students. I would check to see if his speech pathologist has heard of Talkies.

    Since sensory processing disorder often accompanies autism, I would look for a good OT as well. OT has helped my students tremendously when it comes to coping with day to day life and focusing on schoolwork at school if they are older. I'm sure he has seen an OT because he was a preemie, but if there are any sensory issues going on, I would definitely look into regular OT sessions.

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  12. Have you researched Aquatic Therapy? My son with special needs finds it so relaxing. Children Physical Therapy Associates in OP is wonderful!

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  13. I replied right after I rad this but for some reason it's not showing up, maybe it didnt go through.

    Long story short I said I love you and I am praying for you and I am sorry it is so hard, but I really believe God is going to pour out grace.

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  14. What a moving and emotional post that I can only imagine was written with a few tears, right? Caleb is a beautiful child and we are blessed today that you chose to write about this. I suspect that you are going to be getting a lot of "advice" but I am positive that you are doing all you can to give Caleb all that he needs while keeping the other children in mind, too. It has to be a delicate balance but prayers are coming your way. I have no advice but do know the power of prayer. So that is what I can do for you and will. Blessings and thanks for sharing so honestly----without a doubt someone will read this post who needs to read it and be helped by your words.

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  15. I'm sorry to hear this Rebecca. Caleb is lucky to have you guys as parents because you will be sure he gets the medications or therapies he needs.

    Life is going to be a little different than you pictured it, but it's going to be ok! (hug)

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  16. My heart and prayers go out to you, your family and sweet Caleb. What an amazing smile he has and I hope the oils and therapies bring you many more smiles ahead.

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  17. I see so much strength in your post. You are so much stronger than you believe. It is hard not to blame yourself of feel guilty. I totally get that. One step at a time. One day at a time.

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  18. You are a strong family doing what's best for one of it's members. I am not going to offer condolences on his new diagnosis. This will be one of the most challenging, and rewarding, journeys you will ever undertake. I strongly urge you to contact your state's autism society to see if they can pair you up with a family advocate. It is a violation of his civil rights to be denied assistance in an academic setting, particularly when safety is quite clearly an issue. They may also be able to help you get qualified for respite services, which will be invaluable to your family's emotional/mental health. I have been working with children with autism spectrum disorders since 1996, and it's amazing what I've seen essential oils, supplements and diet changes do. Stay strong, love each other, support each other and don't ever be afraid to ask for help! :)

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  19. I'm sorry for the loss of the hope of a "normal" child for you. However, I can tell you that when everything is said and done, you will find that you were blessed to have Caleb. It will be the hardest thing your entire family will ever go through, barring death and other irreversible things, but it will bring many blessings also. We took a baby boy into our home and ended up adopting him. He was never diagnosed with autism, mainly because I felt he already had way too many labels already and it couldn't help him.
    On family outings, my husband would bring a book, and we had calming things in the car for my son, so when he had a meltdown in public, he could go to the car with my husband, and my other son and I could finish the outing so that he didn't miss out on school functions or the zoo, whatever. Why did my husband have to go to the car and not me? It's because my son got very violent with me and would physically attack me. My husband is handicapped, so my son didn't attack him because my husband couldn't control his behavior like I could. I unfortunately had to restrain my son so he didn't hurt himself or me. I HATED doing that, but after he hurt himself badly a couple of times, it was necessary. With the right behavior interventions and medications for the behavior, he is now a 26 year old with a job and an apartment with staff, and the best son ever.

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  20. Oh lady, my situation isn't quite yours but I do know what it's like to have a child with a diagnosis (in our case ADHD and anxiety) and having things so simple for others be harder for them. It's so tough. But, I have heard myself say that God made him special for a reason and so we just do our best and pray a lot. I have faith God will guide me through the difficult times and I try to just hold onto the good times as much as I can. *hugs*

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