parenting special needs children Archives

Light it Up Blue for Autism

April 12, 2014 by Emilee Evans

April is Autism Awareness month. World Autism Awareness Day is April 2nd. Many people put up blue lights or wear blue – all to join Autism Speaks to shine a light on Autism by raising awareness. It begins April 2nd and lasts all month long. Many are doing this in support of friends and family and many of us are living it every day and are grateful for this awareness! Check out World Autism Awareness Day on Facebook as well! 1 in 88 people are on the Autism Spectrum. Do you want to help? Visit my Light it Up Blue page to learn more and make a donation to Autism Speaks.
I wanted to share our personal journey with Autism as every story is different. Our oldest son who will be turning 8 at the end of the month has PDD-NOS, which stands for Pervasive Developmental Disorder – Not Otherwise Specified. For those that are familiar with Autism Spectrum Disorders you are probably familiar with PDD-NOS. Those that aren’t have probably never heard of it, and you might not anymore as there is discussion that they are going to start grouping everything into “Autism Spectrum Disorder.”
To sum it up – Brayden is high functioning on the Autism Spectrum. Sometimes a “high functioning” diagnosis can be both a blessing (because it absolutely is a HUGE blessing) and a downfall (for insurance purposes). Brayden currently receives Speech Therapy and Occupational Therapy, but even getting both of those is a push on our insurance because he is high functioning. He has never qualified for special services such as Applied Behavioral Analysis, which is covered under an insurance “extension” because he is high functioning (or mild by their definition), and it must be at least moderate to severe to qualify.

So, being an advocate for him has been frustrating at times! In that way, we have had to learn a lot about the Autism Spectrum and how to best help him. Because I homeschool I am blessed to be able to work with his special needs and be sure he is getting the help he needs?

So how do you know?

I often hear or get asked how do you know if your child is on the Autism Spectrum? I mean we also have two children with Sensory Processing Disorder as well – how are they different? Well, that’s for another blog, but my best answer to how do you know is this – go with your gut instinct. Whether it is an Autism Spectrum Disorder or something else – if you feel there is something “different” talk to your child’s healthcare provider about your concerns. If you feel they aren’t listening then push for answers!
Maybe it’s nothing, but maybe it is something. There may even be some incorrect diagnosis along the way or people ignoring you, but YOU know your child. I always encourage parents to ask for answers – demand answers.
Our journey with Autism actually started when Brayden was only 15 months old. He had maybe 3 words. It was definitely concerning, but to be honest, we just thought it was a speech delay at that time. He had some “different” behaviors particularly the drawn out screaming and fits which we associated with his frustration and not being able to talk. He was a happy baby. He didn’t really like to be held and liked to just kind of do his own thing.

As he entered the toddler years he went from being the happy baby to the always frustrated toddler. When he started speech therapy it was brought up that he might have PDD-NOS. When I looked it up and saw “Autism,” I have to admit my response was NO. That’s ridiculous! There is NO way! I did put the idea in the back of my mind and then moved on.
When Brayden turned 2 my husband left for Basic Training. Brayden was in an Early Intervention program at that time, and his behavior at home was escalating. I assumed it was due to having a new sister (she was 4 months old when Joey left for Basic) and daddy being gone (except he called him “mom” because that was one of the few words he had at the time). He did well in the early intervention program and did OK in our weekly early intervention play group except he just couldn’t seem to “play well” with the other kids.

Waiting for his bus to special ed preschool

Once my husband got back we had to pack up and move to his first duty station in the Washington DC area. Once getting there we hit a “reset” button for Brayden’s therapy, and that was really frustrating. At that time his behavior hit a major decline and not only did he seem mad and frustrated but he also started getting violent. It was scary! I actually feared for our daughter because of his violent tendencies. Knowing how he hurt me I was very afraid of how he could hurt her.
What was I doing wrong? Why did my happy baby become so angry and mean?? It was really disheartening! Everything I had been learning for his Early Intervention was no longer working. It was at this point that I just felt that nagging – something is “off.” This isn’t “normal,” and I don’t think it’s “bad parenting.” Many parents of children with Autism Spectrum Disorders have heard more than once, though, that it’s bad parenting!
We finally got him in for a speech evaluation, and he did qualify for therapy. I felt like speech therapy wasn’t enough, though. I felt like there is definitely something more going on here. They sent someone out to our house once a week, but it was already the end of the school year, which is what the therapy program followed as well. So, she would only get to visit 3 times. That’s all it took. Brayden had one of his MAJOR meltdowns.
He grabbed Aurora by the head (which I obviously intervened), started hitting the dog, started hitting me, and then he started throwing everything he could get his hands on – at me AND at her. When a child gets violent with an adult they have only seen a few times it raises a red flag that something more could be going on. So, although, I was MORTIFIED by this visit she was glad to see this behavior so she could recommend him for further evaluation.

I’ll cut out some of the middle here and say he was first diagnosed with ADHD and told he should be put on medication. We felt this was wrong and disagreed. After pushing for more appointments we were referred to a child psychiatrist. While I was talking to him Brayden started flipping over the chairs, shaking the weight scale, and then proceeded to dump out my purse and put a couple things in his mouth as he took out and lined up all of the pictures from my wallet. When asked if this was “normal” behavior I said yes.
He asked more about the putting things in his mouth at which point I told him he also bites and chews on almost everything wood and has left teeth marks all on his bed and our entertainment center. I was almost in tears at that point because it truly was embarrassing for me! It was then that I got my answer. He said this isn’t ADHD, although it is commonly misdiagnosed as such at a young age this is PDD-NOS. I thought back to when he was 15 months and wanted to smack myself in the face for blowing it off! Even though he explained Brayden is high-functioning I have to admit it was still a little disheartening to hear.

After my initial feeling of discouragement with an Autism Spectrum diagnosis I realized we had to move on together as a family and do the best that we can. We have to continually be an advocate for him, and this attitude has proven to be extremely helpful. Although Brayden has not qualified for certain therapies due to being high-functioning we have made sure he does get the therapy for which he does qualify and there has been major improvement! There will always be things that are “different,” but it’s who he is, and we accept it as such while helping him become the best he can be.
It’s been quite a journey. There are still good days and bad days, and we have a lot of the journey still ahead of us, but it gets easier as we go – as we learn to trust God and learn more about Autism and where Brayden is now and where he will be. We have nothing but hope for his future, and I continue to pray that as more awareness is raised for Autism many children with Autism Spectrum Disorders of various degrees have bright futures ahead. As more people learn about Autism and educate themselves and others the journey already becomes much more pleasant!
Are you on this journey as well? I would love to hear from you!

Re-evaluations for Speech

January 26, 2013 by Emilee Evans

Yesterday was the 6 month re-evaluation for the boys’ Speech Therapy. It’s a chance to re-visit their goals, see their progress, and possibly make new goals. Sometimes, though, it can mean ending their services. That isn’t always a good thing, either. So here is what is going on with our boys and their speech.
Little man went first, as usual. It really throws him off his routine if he doesn’t, so it’s just a given now that if it’s a therapy day where they won’t be switching (one day a week one is in OT while the other is in Speech and they switch), Chaz goes first. He was having a good day today, which means he wasn’t being grouchy and disagreeable. Luckily, that continued into the evaluation. They said he did really well and cooperated without any fuss! As far as the testing goes he’s about the same as he has been – no delay in receptive communication but a moderate delay in expressive communication. It doesn’t mean he hasn’t made any progress – he has. He’s made A LOT of progress! He’s actually communicating with words now, which is a big difference! Some of his words are still getting “stuck,” though. What I mean by that is instead of making a clear sound they come out nasally. He has so much going on with the nasal speaking, the choking on drinks, the stopping breathing when he sleeps that we’ve been taking it one step at a time – seeing one specialist at a time. We discussed, though, that instead of doing it that way (which is taking a long time and getting us nowhere), she is going to give us referrals to both ENT and for the swallow study so we can knock them both out. It might be easier to see then as well if they’re related or separate issues – and if both (or neither) could be affecting his speech. So, we are keeping the same goals for Chaz and we’ll just keep going! I am so proud of the progress he’s made, and we’re so blessed he has such an amazing Speech Therapist that works with him on his good AND bad days and truly is concerned for him!
B then had his evaluation. I have to admit I was most nervous about his because he was already “borderline” of not being able to qualify the first time. When the testing came back he did score at age appropriate level for receptive communication and just under age appropriate for expressive. Not enough to qualify him by our insurance’s standards. Overall, though, they’re really cracking down on therapies, but that is a post for another day! Well, then we talked about articulation, which was (and still is) a BIG concern. He tested below his age more significantly for articulation, but it still wouldn’t be enough. The next biggest concern is pragmatic speech. This is a common concern with children on the Autism Spectrum. Pragmatic speech is basically how you communicate socially. Things like having him interact with others on a regular basis seems like the easy answer, but when they’re on the Autism spectrum that is definitely not always the case. Some concerns with Brayden’s pragmatic speech are:

Not being able to look in your eyes when communicating.
Interrupting.
Not being able to stay on topic, changing the subject, etc.

And well, those are just the tip of the ice burg. He really has many of the key issues with pragmatic speech that are listed in this article, but those are the main concerns. Because he has a diagnosis of PDD-NOS (Autism Spectrum) there is still a chance he will get approved to continue speech therapy based on the pragmatic speech concerns. The wonderful team of therapists will be doing all they can to try to keep him in therapy, so now we just have to pray for the best. Don’t take this the wrong way, we are VERY happy he is at age appropriate levels for receptive and expressive communication and getting better with articulation, but a child on the Autism Spectrum needs that extra help particularly with the pragmatic speech. He is also so very close to meeting the goals we had set with his speech! Of course, I’ll always continue to work with him, but I can’t quite describe how it’s not the same. So, we’ll find out in a couple of weeks whether he will be able to stay in speech or not.
As a random closing: I’m really disappointed with the way things that are important in regards to special needs children get disregarded by insurance. They’re also cracking down on all types of therapy. Some are saying once they hit a specified age (I believe it’s around age 7) they will no longer qualify for things like Occupational Therapy because it’s a “chronic illness that can’t improve.” That DISGUSTS me. Yes, Autism and Sensory Processing Disorder don’t just go away, but they CAN and DO improve with help! I think it’s so wrong that they basically just tell you to “live with it” rather than giving each person a chance to be the best they can be. Actually, they don’t even acknowledge Sensory Processing Disorder as a disorder needing therapy if you remember what I wrote about our daughter’s evaluation. Again, there are MAJOR concerns that need to be addressed, but everything is calculated by test scores and other things that don’t reveal the whole picture. I hope we can spread enough awareness that it trickles to those that make these important decisions for insurance coverage! I know I, for one, won’t stop pushing to be an advocate for my children!

The Misconception – I'm not Supermom

January 14, 2013 by Emilee Evans

I think a lot of things are based on perspective, and I know this to be particularly true because I have heard totally different perspectives regarding myself as a wife and mother. I like to give people the benefit of the doubt and assume they truly don’t understand my medical issues or that they don’t understand the intensity of parenting 3 special needs children when you and your spouse both have medical issues. It can be downright overwhelming.
Although I feel hurt when someone says something negative in regards to who I am, I ultimately remind myself I’m a child of God, and HE chose me for this time and this place. He surely likes to choose ordinary people to take on extraordinary tasks – and it’s all for His Glory!
So, although I DON’T agree with the naysayers, I also don’t agree with the praises. You see, some people imply I am “supermom,” but I can assure you I am FAR from it! I am definitely not supermom. Yes, I do take on some daily challenges others don’t, and there are many others that take on daily challenges I don’t. I can assure you I wouldn’t make it through a day without God’s help. Many days I’m down on my knees just praying for some peace in my spirit so I can continue about my day calmly! Yes, I do have to overcome a lot to even do simple things sometimes – like playing on the floor with the kids!

Not Supermom

I want to let you in on a “typical” day for me:
The morning starts out with the kids being fairly agreeable. B and A both wake up fairly early – before 8am (I know that’s not early for some, but I’m not a morning person!) C, on the other hand, may sleep until after 11am because there is a high possibility he (and I) were up until after 2am because he couldn’t fall asleep yet again. To say I wake up tired would be an understatement. I’m absolutely exhausted in the mornings. I am so glad the kids are (usually) pretty agreeable in the morning because I am prone to being grouchy when I’m tired.

By lunch time, though, things start to go down hill. It doesn’t matter what day it is, whether we’re well into our homeschool day, or it’s not a homeschool day. It usually starts with Chaz having meltdowns. Sometimes they make sense, most of the time they don’t. All I can guess is he is under or overstimulated, but I’ve learned not to try to guess which it is because if I try to respond to his being understimulated when he’s actually overstimulated (and vice versa) I would be fueling the fire so to speak.
Instead I try to stay calm and encourage him to use his words (though he still has quite a speech delay) or point to something he wants or needs. The problem is, he sometimes is already too far into it that he no longer knows what he wants (or maybe he never did), and it’s like trying to find a solution for an unknown problem. I really do try my best, but regardless, it usually escalates to a point that there is really not much I can do. This is particularly bad when we’re doing homeschool because neither B or A can “focus” when there is something going on in the background, and Chaz’s yelling is pretty hard to ignore!
This is where phase 2 begins. Aurora gets overstimulated by Chaz. It doesn’t always have to be when we’re doing school. It can be any time. She then starts crying about everything, and once she is in her “zone” (as I call them) then every little thing bothers her. At that point I basically have to make sure nobody invades her bubble or she will get very upset with them. Of course, I intervene as much as I can, but once in a while she’ll hit her max and totally break down. Add a splash of “girl” to it, and you get slamming doors, too!
Phase 3? Not really. Brayden is almost always full of energy and is everywhere – meaning he’s in both C’s and A’s “don’t come near me” bubbles. So although there really isn’t a phase 3 because Brayden doesn’t have the meltdowns as often, he tends to antagonize Phase 1 and Phase 2. If he does so enough, then it might lead to a Phase 3 because one of the other 2 couldn’t take it anymore and B just doesn’t understand and gets really upset. He doesn’t tend to develop a “bubble” like the other 2, though. Instead, he tends to be the one in everybody else’s bubbles. Mind you by this point I’m starting to develop a bubble of my own and my patience wears very thin.
I inevitably hit burnout level.

As the day progresses everything waxes and wanes like this throughout until bed time. It’s at the end of Phase 2, though, where the day is the hardest – for myself included. By that point I am mentally and physically exhausted. There are many times I truly do feel like I “can’t do it.” Sometimes I wonder “Why does God think I can handle this much? I’m sure there are moms out there that have 3 kids like ours that knows how to keep their day from even escalating to Phase 2. Why can’t I?” I feel like anything but supermom. Sometimes I feel like a downright failure.
But you know what? We’re fine. We’re better than fine. We’re blessed. Yes, it’s hard – sometimes it’s really hard – like on the days where my Chronic Fatigue is just crushing me, and my Fibro flare-ups are body wide. I can barely stay awake, let alone fight the pain to just walk across the room. Sometimes I have a habit of blaming my health issues for being a “bad parent.” What I have to remember is – our kids are special. There is no sense in trying to compare my parenting to anybody else’s or our children to anybody else’s.
We’re ALL special and unique, and if that is how our days go, I just have to remember it’s an opportunity for me to learn. I learn more about myself, I learn more about parenting, and I learn more about what they are feeling or experiences. And I pray. A lot. And those moments when everybody is calm and fine, and the older two are asking me about God I realize it’s all worth it, and I’m exactly the parent I’m meant to be – neither “bad” nor “super.” Just me. In the grand scheme of things THAT is what matters.
I’m not sharing this to sound like I am “supermom,” because as I have clearly said, I don’t feel that way at all. I do what I have to do just to get through each day, and pray for God’s help along the way. I want you to know I’m utterly HUMAN. I know there are other moms out there, particularly moms of special needs kids that also feel that way, and I want you to know you’re not alone. You’re not a “supermom” maybe, but you’re the PERFECT mom for your kids. Just as God chose me for my family, He chose you for yours.