Friday, February 20, 2015

Special Needs Spotlight || Luke



Hi! I'm Heidi and my husband's name is Mike. We are parents to a beloved little boy named Luke who is almost 5. We live in the metro Atlanta area and love music, movies and good food. Luke was diagnosed with Autism shortly after his third birthday. The symptoms of Autism present differently in each person with the diagnosis. Luke's biggest struggles are: sensory issues (he gets overwhelmed by textures and in large crowds/chaotic situations) he doesn't do well with change or transitions (any slight change or difference in a routine can result in a total melt-down) and he has severe communication-related motor-planning issues. This means that his brain knows what he wants to say but he doesn't have a way to get it out. It isn't the actual act of saying a word or making a sign or pointing to something that he can't do, rather, he struggles with the function of getting his brain to connect with his body to communicate. It is as if his brain is point "A" and the physical act of expression is point "B" but he can't find a road to travel on to get from point "A" to point "B." He knows sign language, he can repeat almost any word you ask him to but he can't do these things on his own without prompting. Luke is in therapy for 30 hours every week and he loves it. We have been so lucky to recently find a place that is a good fit for him with therapists who love him and know how to help him make great progress.

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Miggy: Can you take me back to when you knew something was 'off' with your son, when you first saw the signs of Autism?  At what point did you finally get a diagnosis?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Heidi:  My son has always been very happy, smiley, affectionate, and loving. Occasionally we would wonder about his eye contact when he was an infant--it's not that he didn't make eye contact, he just sometimes seemed to be looking "past" you. He pointed to things, he was meeting all of his physical milestones. At checkups he passed the Autism screenings. He had a couple red flags, but not enough to really worry. He had horrible, horrible tantrums occasionally but...don't most kids? He is also extremely stubborn. But, again, some people are.

As he got older he didn't start to talk. At 18 months he still wasn’t speaking but nobody seemed really worried about it. At 2 years I started to really wonder about his speech and his tantrums. He wasn't talking and he cried a lot (like unconsolable tantrums that would only end when he cried himself to sleep) if he didn't like something or things didn’t go as planned. I asked his pediatrician and she agreed to refer him to an early-intervention program. They evaluated him and told me that he just had behavioral problems and maybe some mild sensory issues. They politely told me to work on being "in charge" more and said he might benefit from some occupational therapy. I left feeling relieved that they didn't think anything was "wrong" and really embarrassed that I couldn't control my toddler better.

We started OT but the therapist was very rigid and demanding and Luke hated it. The therapist came to our house and Luke started vomiting when she would come as a way to try and avoid interacting with her. It was awful. I asked the early intervention program for someone different and tried to get them to allow him to have speech therapy. They said no. So, I told them that we were going to be done. Looking back, now I know that his tantrums really were a big deal, and his lack of speech was a gigantic red flag but at the time I thought that the early intervention specialists and his pediatrician were the "experts" and if they didn't seem concerned then I shouldn't be, either. I will forever regret this.

For the next year I just kept trying to work on things with him on my own. I went to a different pediatrician and asked about Autism, but he assured me that because my son was so loving and affectionate that we didn't need to worry.

His tantrums got worse and worse and he still wasn't talking. Right before his third birthday I found a speech therapist on my own. She started working with him and he improved slightly. I also met a mom who had a son with Autism and she gently asked if we had considered that Luke might have Autism. I told her that I thought he did but everyone dismissed it. She said that I might want to pursue it further. We found a developmental specialist and finally received a diagnosis a few months later.


Miggy: Explain how Luke’s needs affect your day-to-day life?  

Heidi: Pretty much everything I do revolves around him and his therapy. Early intervention is so important for treating Autism and the amount and quality of intervention a child receives directly impacts future outcomes in life.

We live in a state where treatment for Autism is not required to be covered by insurance so we have to pay for it out of our own pocket.* Because it is not covered by insurance, there aren't a lot of Autism therapy options here. I used to drive 75 minutes each way to get him to therapy appointments. I have seriously spent hundreds of hours fighting denied insurance claims and our savings is gone because we have to pay for the majority of his treatment ourselves. (Our insurance will now pay for some speech and OT, but that was a very long process and they still routinely deny claims for it. His other therapies are still not covered at all.) Yes, we want to move to a state that does require insurance to cover Autism treatments but that just hasn't worked out yet.

On the other hand, we try to have as many "regular" life experiences as we can. We take Luke swimming and shopping and after he goes to bed we like to watch movies or a TV show together. Autism definitely influences everything we do but we try to not let it define everything, if that makes sense.                                                                                   


Miggy: What are the biggest worries you face for Luke?    

Heidi: I think a lot about his future. My biggest worry is the unknown. He has progressed a lot in the past year and there are some children who eventually lose their Autism diagnosis. I hold on to the hope that one day he might. I also have to face the reality that it is most likely that he won't. I don't know what the future holds for him but I want him to be happy and know that he is loved. I don't want him to be limited by his diagnosis.



Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Heidi:  One thing that is a big issue for many children with Autism is pooping. It's a gross reality but we have to constantly monitor his poop schedule, the consistency, quantity, etc. I have deemed myself his official "poop doula" because I help him through his issues. (I apologize if this is TMI for anyone!) He is also an acutely picky eater (he eats less than ten foods total, none of which are vegetables or fruits, hence my "doula" status) and my husband and I joke a lot about this. Luke loves cheeseburgers but only from McDonalds and only if they are plain. There is no "wiping the condiments and onions off." If they were on there, Luke will know. My husband and I joke that we need to make sure that the cheeseburger has not even "witnessed mustard." We try to joke a lot about the exasperating aspects of raising a child with Autism because laughter really is the best medicine.



Miggy:  How can people best approach or respond to your child and your family? Considering your son doesn't have a visual condition, is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Heidi:  I know people say this a lot, but it's important to remember that you have no idea what other people are dealing with when you see a child who is acting out in public. I have been the meanie who silently judges the parent with the tantruming child and now I AM that parent. I think that the best thing someone can do is to ask HOW they can help (if appropriate) and to just be kind.

For example, my son is obsessed with the mechanics and buttons at the checkout stand in grocery stores and he wants to touch everything. Sometimes it's quite a circus to try and get items from the cart to the belt and keep him under control. One day, Luke was doing his usual "touch everything freak-out thing" and the cashier tried to distract him by asking "what's your name?"  When I told her that he couldn't talk, but that his name was Luke she realized that our situation wasn't typical and she asked what he would like to do. She let him push the button to use the scanning wand, type on the keypad, turn the belt on and off and scan a couple things. It was a small thing to her, but to me and my son it was anything but.

So often people don't know what to do so they don't do anything or just ignore us. I totally understand that. However, I want people to realize that being ignored by everyone your whole life is sad. People with Autism have feelings, too! I think it is a common misperception that having Autism means that someone doesn't have emotions but it is actually the opposite. I think that people with Autism sometimes just don't know how to process their emotions and get overwhelmed so they shut down and withdraw. They still need to feel loved, appreciated, validated, and accepted. They need to know that people care. :)




Miggy:  As autism is on the rise more and more children are being diagnosed and more and more parents are aware of the possibility that they may have a child with autism. Was this something you worried about before you had your son? And now that you have a son with autism have your views or fears changed?  Is there something you wish you could say to your pre-autism self or to other moms who may have this worry or fear that their child might have autism?   

Heidi: Be proactive. I cannot stress this enough. I said before that I will forever regret initially accepting the opinion from experts who said that nothing was amiss. The earlier you can get help for a child with Autism, the better. My son made so much progress once he started receiving intensive treatment. I would give anything to go back and get him help sooner.

I understand that the possibility of Autism is terrifying to a parent, but if your child has Autism it is what it is and the biggest factor in improving outcomes is early intervention. You will never regret getting your child diagnosed and getting him or her help. It is scary, but you can do it!
You also have to be an advocate for your child. If a situation is not working or the services you are receiving aren’t working, don’t back down. I should have continued to push for a better fit in therapy when my son was in early-intervention and I should have trusted my gut instead of just accepting what the “experts” said.


Miggy:  What is the biggest lesson you’ve learned since becoming Luke's mom?

Heidi:  I no longer fear Autism or other disabilities, but that was a lesson with a steep learning curve for me. So many people say to me "I could never have a child with Autism. I don't know how you do it" or "special kids go to special parents" and other things like that. To be honest, I don't appreciate those sentiments. I know that people mean well, but parents of children with special needs do it because they have no choice.
I often hear parents of special-needs children say that they wouldn't change their child's disability if given the option but that does not resonate with me, either. I don't know if some day I will feel differently, but I just feel like I need to say that it is okay to feel that way.

*I would like to share a little bit about Autism insurance coverage in Georgia. The world of insurance is a tricky, confusing, and complicated place. I think that people really don't understand this until they have to deal with it. In most states, treatment for Autism is covered just like most other problems (cancer, broken bones, hospitalizations, etc.) but in the few states that don't require insurance to cover it, they don't. Families are left with the impossible dilemma of figuring out how to get their children treatment. It is discouraging and sad and so, so wrong. Families have been trying to get Georgia to pass an "Autism Mandate" for insurance (a law saying that insurance is required to cover science-based Autism treatment) for several years. It has failed to pass for 6 years now. Basically, the Speaker of the Georgia House receives lots of campaign contributions from insurance companies and he keeps blocking the bill from being voted on. Here's a video about the girl, Ava, that the bill is named for and her family's experience with Autism.


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Heidi, thank you so much for sharing your thoughts, feelings and most importantly, your Luke with us. What a handsome little guy! First, I'm so glad you talked about Luke's lack of a lot of symptoms, but the persistent few symptoms he did have that weren't improving.  Honestly I know that I would have assumed that if a child is affectionate and can make eye contact, then they must not be Autistic! Additionally, it's good to hear that even the "experts" aren't right all the time. I feel like this will really resonate with someone out there--listen to your gut, your instincts, that inner voice, whatever you want to call it!  So, so important. Lastly, I appreciate your honesty regarding Luke's condition and the questions of whether you would you change it if you had the chance... for a lot of us I think that is a very grey area and I agree that if you don't feel that way, it's totally OK.  Thanks again Heidi!

You know one thing Heidi shared with me is the fact that she's been reading my blog for a long time, but never really thought about emailing to participate in the spotlight because I've already featured several people with Autism.  I told Heidi that everyone's story is different, and everyone will have a unique perspective.  So please, I am still very much in need of participants and even if I've featured the condition your child has, remember you are unique and you will have something to share that no one else will!  So if you want to participate please email me at thislittlemiggy at gmail dot com!

Have a great weekend!

9 comments:

  1. Anonymous7:17 AM

    Thank you for sharing Luke's story with us!

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  2. pallavi8:20 AM

    Always trust mothers intuition above everything

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  3. What an honest, articulate piece this Mom has written. My heart goes out to Luke, and his champion, his Mother.

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  4. Poop Doula. I like that. I can remember vividly about praying for poop for my daughter. Thank you for sharing your story. Luke is a cutey.

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  5. Thank you so much for this article. My son was diagnosed with PDD-NOS when he was 4. Just knowing that he processes everything differently than other kids has been such a help. I agree early intervention is essential for kids. We were blessed the public school district we were in had a great pre-K and DK (diagnostic kidergarten) program for special needs, including Autism. My son is now in mainstream first grade and he's had some struggles with attention deficit, social interaction with other kids, and just learning personal space/boundaries. His teachers haven't worked with his type of autism before so it is a learning experience for them as well. It was so fun to read about Luke. He reminds me of my boy. Good luck for all your endeavors!

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  6. Anonymous5:03 PM

    Thank you for sharing, Heidi and Miggy! I cried reading about the check-out experience, because even with "mainstream" kids, parenting is hard and any help from kind people is so appreciated. I'm glad there are good people out there and I love reading about their actions to get ideas of what I could do to help in a similar situation. Plus, it just warms my heart.

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  7. Gorgeous Boy! A member of my extended family has autism. She is 7 and doing really well thanks to early intervention and therapy. Wishing you all the best x

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  8. Anonymous10:24 PM

    I appreciated your comment about Luke not displaying all of the typical signs. I have a close friend who's 15 year old daughter was just diagnosed with autism spectrum disorder this week. She didn't have eye contact or bonding issues, so doctors treated her other issues independently from each other, and brushed it off as low IQ. There's so much more we need to learn about autism. Your perspective is so helpful.

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  9. This is really a wonderful post.

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