Wednesday, November 5, 2014

My Son Has Autism

After a long day of testing on Monday, my husband and I were told that our youngest son has autism (formerly Asperger's), ADHD and a possible mood disorder like his oldest brother. She called it “The Trifecta” because one condition is triggering the other.

It’s strange for me to type those words. Though my gut knew it to be true, it still feels weird to declare it. It gives me mixed feelings.

I admit that my first feeling is relief. I understand that my son will now have an opportunity to get the help he needs. After the appointment, I hugged my husband and cried in the waiting room. I could feel a weight being lifted off me. It felt so good. This was good news in a weird sort of way. Not that any parent wants their child to have a label, but when you’re watching your child struggle everyday, a diagnosis is the first step in turning things around. And let’s be honest, this news isn’t giving him a label for the first time, instead, it’s replacing the current label people have given him such as “brat”, “odd” or “difficult.” A label of autism may bring patience and understanding where it wasn’t before.

After the feeling of relief comes reality.

My son has autism.

And a possible mood disorder too?

What does that mean?

What will his future look like?

How will we be able to help him?

I don’t want to go down the rabbit hole of worry, but there are feelings a parent needs to process whenever your child gets a diagnosis. A diagnosis that will impact their child’s entire life. Sadness is one of them. My husband and I are going through that now.

There are still feelings of anger for having been dismissed by his previous doctor over a year and a half ago, but after talking to the current doctor, she was able to explain that my son “presents well” and that can lead to a misdiagnosis. But she explained that after spending enough time with him, she could see him slip into the ASD behaviors. She also pointed out that a lot of kids higher up on the spectrum don’t get diagnosed until they are older and to a certain extent they can handle things pretty well, like in a clinical setting, until enough stressors surround them, then they completely fall apart. Forth grade was that tipping point for our son.

On a positive note, she smiled and told us how adorable, bright and funny he is. Then she told me that I should read up on “2e kids”. These are twice exceptional kids, intellectually above average, but diagnosed with one or more disabilities. She believes this describes our son. She said it’s like a coin, you have one side that has all the struggles and if you flip it over, you have something pretty special.

I can’t argue with her, he is pretty darn special.

Then I have a final feeling. And would you know it... it’s hope.

Kinda funny after I recently said I was letting go of hope. But there it is, once again floating in front of me like a pretty, shiny balloon.

I have hope that my son will be approved for services and that we’ll be able to give him the support he needs in his school and at home.

I have hope that I will have access to the support I need in order to raise my son.

I have hope that we can now make a difference.

I have hope again.

Hello, old familiar friend.












15 comments:

  1. I'm so glad that a doctor saw what you and others were seeing and diagnosed him. I hope this opens more doors for you to get him help at school and at home. Good luck on this journey. I have two kids with Autism (Aspergers), ADHD, Anxiety and my son has some type of mood disorder that hasn't been diagnosed. Hang in there!

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    1. Thanks Michelle. Are you using meds at all to help your kids?

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    2. Yes I am. My son who is 9 is on Concerta, Clonodine and Zoloft. My daughter who is 7 is on Vyvanse and Intuniv. But, I have noticed her anxiety getting so much worse and now I am seeing her being a little paranoid. I talked to the pharmacist yesterday and said that over time the Vyvanse can increase anxiety. So once again we will go back to the doctor and see if it needs to be changed. My son has been through several ADHD medications and two of them made mood and aggression worse. It took awhile for me to convince the psychiatrist to try something for his mood and aggression.

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  2. I could have written this myself about 3 years ago. After all of the testing we came out with ADHD, ASD, mood disorder (a year after that it became bipolar disorder), RAD, anxiety disorder, and possible PTSD. I knew in my gut that something was not right. People kept telling me she was too friendly, too social, and too all kinds of things but they didn't see her day in and day out. I cried, and cried, and cried. And then I set out getting help. 3 years later we are surrounded by the most amazing professionals and resources and while it is still VERY hard to parent her we do not feel alone. It's a good feeling. I'm so glad to hear that your gut was right and that this doctor saw what you saw.

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    1. Thanks Erin, I hope to also be surrounded by amazing professionals. Fingers crossed!

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  3. I can hear your "old familiar friend" in your words, Mama Bear. This is hope for everyone in our family. Remember that that hope is firmly tied closely to your other familiar friend, FAITH.

    MIL

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  4. I am happy that you finally uncovered the truth and can now find help !

    For the twice exceptional aspect, I strongly advise you to prepare a template letter for when your son has to see a new doctor.
    Many, many people, including doctors, get stuck into the stereotype that disability precludes having above average intelligence.
    This template explains the behaviors, the reason for your visit (they cannot say "so, if you are having disability X, why are you coming to see me ?" since it's written right in front of them), your fundamental wishes for treating your son and a few words to set up a positive relationship.
    The night before the visit, all what you need is writing the doctor's name after "Dear Doctor ..." to make it more personal and the reason for the visit. And voilĂ  ! Keep it one page maximum to be read.
    It sets you up in position of authority towards the doctor. So, he will be much more eager to listen to you because you'll show that you mean business with them.
    And if you want, bring the IQ test result and anything that can prove your son's ASD diagnosis : another doctor won't try to fight against you on these points, he will see right away that it's not a self-diagnosis-made-out-of-overly-protective-mother.
    This way, since you show you mean business, the doctor will talk to you like business.

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  5. My daughter has the same diagnoses. She is 17. I would suggest that you carefully research and find a psychiatrist who is willing to work with you and has experience with complicated kids and begin to explore the medical treatment possibilities. My one regret is that I did not begin medications sooner with my girl.

    Trust your gut with the meds and any new doctor. Don't be afraid to speak up or find a new one if after a reasonable time you find it is not a match. I would also recommend that you begin looking into some biomedical treatments for your son. I'd say that stuff is every bit as important as meds.

    There is much reason for hope. My 17 year old daughter with autism, ADHD and mood disorder NOS was just accepted into her college of choice on Wednesday. We still struggle greatly with the social and executive functions, but we continue to move forward.

    Take care.

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    1. Thanks, that's very encouraging to hear!

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  6. That's beautiful mama bear. His doctor sounds amazing. May that shiny balloon of hope fly you and your family to the stars =)

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    1. Thanks Nemya, your post made me smile : )

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  7. First I want to thank you for your bravery and diligence to share your experiences. I am sure you have helped many (probably more people and in more ways than you may ever know).

    Second, let me add my voice to those above who offer you encouragement and support. Hope is critical and ,as you say, it is like an old friend that will not desert you.

    Third, let me say that my family and I have dealt with some of these same issues for some time. If possible, I will contribute more details over time, but for now I just want to share with you that the diagnosis you received for your son is the beginning of a lifelong journey that will have its ups and downs but I remember vividly hearing those words for the first time about my son (bipolar, Aspergers, ADHD). He was 7 at the time. He is now 21 and still has the same diagnosis, but he is in his 4th year of college with a GPA to be proud of thanks to medication, countless professionals, family support, prayer, and his own spirit. We have been fortunate to be able to afford the huge costs involved.

    There have been very difficult times and some dark days. But he is living proof that there can be a future for kids with these challenges. Yes, he lives at home, cannot drive a car, has few friends, and requires constant attention and someone must accompany him everywhere he goes. Inde pendent living is something we can dream about for him but we have acknowledged the reality he will probably need our support forever. But he is leading a life that has hope and enables him to put his unique gifts to use and make his mark on the world.

    Don't give up, ever, and as other have told you countless times, trust your instincts.

    If time permits I will contribute more here about our journey over the past 14 years and the things we have learned along the way.

    Ed

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    1. Thank you so much Ed. I would love to hear anything you can share about your journey, in fact, would you be interested in doing a guest post on my blog sharing your story? Let me know!
      Mama Bear

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