Friday, April 14, 2017

Special Needs Spotlight || B

Hi, friends! My name is Anne Cropper. My husband, Taylor, and I are raising our five children (ages 10, 9, 6, 4, and 1) in Southern Oregon. As we have learned SO much in the last year about our oldest son, B's special needs, I have felt strongly to share our experience in hopes that it might help others who are trying to navigate these difficult and often lonely waters.

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Miggy: Hi Anne and welcome! I'm so excited to be featuring you and your sweet family here today, especially your son B. Can you take me back to the day you knew something was not quite right with B? What were some of the first red flags you had? And how long from those first signs to getting an actual diagnosis or a doctor’s confirmation that something was not quite right? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Anne: When B was three or four I began to realize the depths of his precociousness and strong personality. He had been speaking completely fluently since two, and had an exceptionally bright mind. He would ask questions like, "Mom, how you do say 'indigo' in Chinese?" He was also quite rigid and inflexible. A change of plans or leaving a fun play date could make him come unglued. But a lot of children at that age are like that, so I just thought he had a little extra stubbornness that I needed to break him of, so to speak. People say you’re supposed to choose you’re battles. With B, there were a lot of battles and I chose almost all of them. Wearing socks, eating, combing his hair, going to school. For years I saw these as battles I needed to fight and win. And for years we struggled.

It was two years ago, when B was turning nine and in the end of third grade, that we began to realize that we were dealing with more than a stubborn, strong-willed child. Unwilling to complete a task in Math that he deemed too easy, he crumbled up the assignment and threw it at his teacher, and then sat in the principal's office and told him, "School is legal slavery." Around the same time, my husband went to pick him up from cub scouts and walked in to find him angrily berating the scout leader for something that hadn’t gone like he wanted. A lot of kids melt down or disobey at home, but then pull it together in school or in public settings, B struggled equally in and out of the home and these two incidents led us to the conclusion, that he really didn’t have control over his emotional outbursts. The frequency, intensity, and duration of these episodes continued to increase, and things hit their peak about six months ago. On most occasions, after these episodes he’d spend hours crying and lamenting his inability to control himself. This was one of the hardest things to watch as a parent—the external consequences of his behavior were hard, but the suffering after the fact was possibly worse. We came to see that this was a bigger challenge than we had the capacity to understand or deal with on our own and decided to look for help.

We started with our wonderful pediatrician who connected us with the group’s in-house psychologist. He referred us to an outside psychologist whom we started seeing weekly for about two months. This was a huge turning point in this whole experience, perhaps most significantly for me. She explained that in spite of being really advanced in some areas, he had certain lagging skills in the areas of cognitive flexibility and emotion regulation. To have her show me the parts of the brain this was in and explain that this was in his DNA was a life-changing experience. For most of B's life I had butted heads with him and wished to "break" him of these behaviors. She helped me see that just as no amount of threatening or bribing will make a child with dyslexia learn to read faster, carrots and sticks can’t work for children with lagging mental and emotional skills. Just like all skills, they needed to be learned.

Once I saw his struggles in this light, I became his champion and advocate. My heart changed, our relationship changed, and I had a new set of tools to help him develop the skills he was lacking. I began to fight for him so he could be more successful in the world. During this process we had moved to get him into a different school that we thought would meet some of his needs better but he was really struggling with the transition and things went backward for a while.

He was refusing to participate in certain tasks and getting in trouble on the playground. His new teacher and the administrators were unclear about how to help him and, honestly, since he was brand new, I think the teacher felt a bit like I once had like, "Who is this defiant punk?!"  I knew that I needed to help them see the B that we see--a boy who is sweet and bright, but who needs some extra help in certain settings, and I knew that in order to have them make any modifications for him, we needed a diagnosis and an individual education plan (IEP). In Oregon you cannot get at IEP or 504 plan (Google it) without an official diagnosis. After a lot of reading and living with B for ten years, I felt fairly certain that B was on the Autism spectrum. We got an appointment with the only doctor in our area that can diagnose for Autism, and, interestingly, he did not give us the diagnosis I was expecting. Because B is so empathetic, so remorseful following his episodes, so physically affectionate, has no trouble with eye contact during a conversation, and can eloquently articulate how out of control he felt after the fact, the doctor didn't think Autism was the right call. Instead, he diagnosed him with Disruptive Mood Disregulation Disorder. Yeah, it's a mouthful!


Essentially, because of B's lack of cognitive flexibility and his desire to have control, when faced with a situation in which he feels something is unjust and/or he is out of control, his lack of emotion regulation flares and he explodes. We agree with his diagnosis and it gave us what we were seeking--a recommendation for a 504 plan--but the school district is also doing an Autism evaluation, and it will be interesting to see what the results of that are. The various methods for determining these diagnoses are somewhat subjective, so it has been really helpful for us to keep our minds open. I think, in B's case, the semantics of the diagnosis are less important than understanding where his lagging skills are and how to help him. Much of what we do with him and are helping his teacher understand about working with him comes from a method and book our psychologist uses, called The Explosive Child by Ross W. Greene, which I highly recommend.

The school has been amazing and, after several meetings with the psychologist, teacher, principal, assistant principal, and playground aid, we had accommodations in place for B to succeed on the playground and in the classroom. Now with the diagnosis in place the paperwork is being done for the 504 plan. Some of it we already had in place because the school was so proactive and fantastic to work with, but now it will be legally binding, which is really important!


Miggy: As we know, most disabilities and especially autism, exist on a spectrum. Can you explain how autism manifests in B and how his needs affect your day-to-day life?

Anne: This questions is tricky to answer because the evaluation is still in process, and maybe they will agree with the doctor that he isn't necessarily on the Autism spectrum. I will just say this: I have come to look at the spectrum as just that--a spectrum. In fact, aren't we all on that spectrum somewhere?! I realize that in many extreme cases, such as in children who are non-verbal, Autism can present a major challenge. But, in many children I think having special needs isn't necessarily a negative thing. What I mean is, the same brain and DNA that make it hard for B socially and emotionally also make B an exceptionally interesting, deep thinking, special child. I think that is true for many, many people who are diagnosed on the Autism spectrum.
Miggy: What are the biggest worries you face for B? On the flip side, what are your hopes and dreams for him?

Anne: My biggest worries for years have been about B's social struggles. His outbursts and inflexibility have sometimes alienated him from his peers, even within our family. Will he be able to make meaningful relationships, get along with college roommates, etc? With the new tools and resources we have access to and the tremendous progress he’s made recently, I worry less about these lately because I see so much growth in his interpersonal skills and self awareness.


Miggy: There are certain hardships that come with having a child who has an invisible disability. How can people best approach or respond to B? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Anne: This is one of the reasons we have been very open about B's struggles and needs. Because B is high-functioning and has no physically visible disabilities, some friends and family have observed some of these behaviors and have drawn their own, untrue, conclusions about B's personality and our parenting. To be honest, this has been incredibly painful for us, for me particularly. It has taken me years to own the fact that we are parenting him according to his special needs, and although it looks a little different from how we interact with our other children and certainly how many other people parent, we’re confident that it’s right for him. I don't worry about this anymore, but a couple of years ago it was the source of intense anxiety and pain in my life. Essentially the best thing people can do for B if he is having an angry surge is to give him space and time to come back to himself. Threatening him or backing him into a corner escalates him. 

In more long-term, general terms, B, like everyone else, needs to be loved without judgment. You never know what a family is really dealing with. It's so easy to draw conclusions based on our own perceptions, and completely miss the mark. This whole experience has stripped me of some of my pride as a parent and has helped me see individuals and families in a completely new way. As a friend so eloquently put it in recent conversation, "we all need to give each other more grace."


Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to B?

Anne: Siblings have played a mixed role in this experience. One of them, who just loves to push buttons, has exacerbated B's lack of emotional control on many occasions. For a long time B viewed this brother with great contempt and I feared deeply that their relationship would be permanently damaged. Miraculously, we have seen a lot of healing between these two lately, and feel very hopeful. The other sibling I will particularly mention is our baby, George. His conception is still a bit of mystery to us (ha!) and I have wondered often if God sent him to our family just for B. Since his birth I have watched B soften in his presence. There have been many instances in which B was uncontrollably angry or inconsolably sad until George walked in the room and melted it all away. Their bond and connection is a sacred one to me.

Miggy: What is the biggest lesson you’ve learned being B's mom?

Anne: 1. If your child has special needs, you have to be a squeaky wheel. I am by nature a pleaser and non-confrontational. I have learned to be more assertive. There are ample resources in schools and the medical field, but nothing is going to happen unless you as the parent are bold and proactive. Do your research. Make the appointments. Be clear about your goals for your child and keep fighting until his/her needs are met!

2. After struggling for a long time feeling like these negative, explosive experiences were dragging us down as a family, one day I had the following impression: "You cannot let this trial be defining. You cannot let it define him, you cannot let it define family life, and you cannot let it define your career as a mother." That was the all important paradigm shift that changed me forever.

Today, B is doing incredibly well. For almost two months now he has been quite stable, with the frequency, duration, and intensity of these episodes at a steady decline. The effect of his counseling has been monumental. The simple accommodations made at school have been essential. He has also recently started taking some medication that seems to be helping. There are no simple fixes and I know from experience that this time of stability will not necessarily last forever. There is a lot of ebb and flow with things like this and, ultimately, it's a marathon not a sprint. One reason we have been so open about this is that I know many families are struggling with a child and don't really know what to do. We had spent years reading parenting books, talking with our parents for advice, and praying to know what to do. Those were all helpful, but we could not be where we are today without professional help, and we want to help people know who they can turn to and what the process looks like.
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Thank you so much Anne, this was fantastic. This is two weeks in a row that I've been able to feature moms I know in real life, both of whom I've met through this crazy world of blogging. I think Anne's first answer is really, really important as far as realizing that 1--they needed to seek outside, professional help and 2--that her son's behavior wasn't something she could discipline away... he needed help and thank goodness they worked  + advocated until they found that help! I also love Anne's answer about the challenges of having a son on the spectrum: "But, in many children I think having special needs isn't necessarily a negative thing. What I mean is, the same brain and DNA that make it hard for B socially and emotionally also make B an exceptionally interesting, deep thinking, special child." Reminds of these moms words from a couple weeks ago and when she said, "Some of the things that put him on the spectrum were also some of his greatest strengths." YES. It is my hope that disability will stop being automatically considered an undesirable and less then quality of life. It's just not true. 

Thanks again Anne for your amazing interview.  I know this is going to be so important for many people to read. Those beautiful kids are lucky to have such a fantastic and loving mama. 

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com. 

Have a fantastic weekend!
XO, 
Miggy

5 comments:

  1. Sending positive thoughts to B and his family for their journey with his unique needs! He's blessed to have such an insightful mom.

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  2. Beautiful. Love to see Anne featured here, I've been following her for a long time! She also shared some things that are valuable to me personally in my journey with my son. So so great!

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  3. I could I could have written this about my oldest. For us it ended up on the ADHD spectrum, but with many of the same experiences.
    We have the same sibling that specializes in pushing buttons. And the youngest two who help calm down.

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  4. Hi anne- I have a son just like yours. Anecdotally, we thought he has sensory integration disorder- but he's not formally diagnosed so I don't know. We're fortunate to go to a progressive charter school that offers support and accommodation for everyone- so he doesn't need an Iep. But he hasn't seen a doctor in two years (because he'll fight any stranger that tries to touch him) and the last pediatrician we saw told me that clearly his behavior was my failure as a mother, so I can relate. It's hard for his older sister to understand that we aren't just being easy on him all the time. Anyway- thank you.

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  5. Thank you for this post!

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