• Kayte Thomas

Mamas of kiddos with Complex Needs, you've got this!

I am so excited to have my very first blog post based on a request! Here is the question submitted (posted with permission):

“I would love to see a blog about mamas of complex kiddos who think they aren’t the best advocate for their child. Every one of us struggle with it and I have found there are limited support groups for complex mamas & it’s frustrating to be alone!

Ah, this is such a great question. And one which has required me to do quite a bit of self-reflection. As a general rule, I don’t provide self-disclosure unless absolutely necessary. The reason for this is that self-disclosure shifts the focus from *you* to *me*, which tends to change the dynamic in therapeutic engagement. So, whenever I can guide someone through a situation without giving any impression that I may have experienced something similar…I do. My exception to this rule tends to be when there are issues pertaining to being a mother of a child with complex needs. Some issues are just so close to personal experience that it is difficult to address without some of that personal experience bubbling up and in those instances, it is necessary to provide a little bit of insight. Not to make the other person relate to you – in fact it’s just the opposite. The self-disclosure is intended to make the other person aware of your biases.

Here’s the deal: I can relate to this request because I too am the mother of a child with complex needs. Anyone who knows me, or even someone who does a quick Google search of my name, will realize this very quickly. I have spent virtually my entire adult life advocating not only for my own child, but for children with various similar needs across the globe. I co-founded an international non-profit for one of the birth defects my child was born with, have sat on technical expert panels, have been a rare disease advocate, and provided insight in other ways as well in various settings. But why does this matter when answering this question? Because the first place my heart, mind, and soul went to when reading this was not towards my clinical training, but the emotional and physical response of that work. It’s essentially the equivalent of the Hunger Games salute for special needs moms - that sense of solidarity when being in a really difficult situation which may require resistance to the status quo.

I feel you, Mama. And I'm sending you strength for the journey.

That’s not the best place for a clinician to approach a discussion because of the difficulty separating the personal from the professional. Hence the reason for the disclosure. And the disclosure is ***I can relate to your question, dear reader.*** Now you know. Proceed accordingly, knowing that my response comes from having walked a similar path in life.

Now, the way I am going to approach this question is to address it from both the personal and the professional, because despite my personal experience I also have training in this area. I want to start out with acknowledging that yes, you’re right! Many mothers in this scenario struggle with feelings of inadequacy. It can be especially hard if your child has ongoing complex needs or issues requiring multiple areas of advocacy. And if the need in question is more rare (i.e., not something which is commonly recognized), the sense of isolation is greater. There’s often an inverse relationship between societal recognition of the issue that you’re dealing with, and the level of confidence you have in yourself. That’s kind of the nature of not having enough support.

Research shows that parents - primarily mothers - respond in one of two ways when receiving an adverse diagnosis for their child. They are either information seeking (meaning they gather all available resources to gain full comprehension) or they are information avoiding (meaning they prefer not to know potential outcomes and tend to take a wait and see approach). There is no specific right or wrong way to approach this though, but these tend to be the two most frequent responses. Advocate moms though tend to be information seeking.

When advocating for your child, it is common to “think you aren’t the best advocate” as the reader above mentioned. Some of this is because of the position you’re in – we are taught to listen to the experts whether they are doctors, teachers, therapists, etc. But unless these experts have a specialization in your child’s specific needs/disorder/disability, they are going to have general knowledge which is not necessarily applicable to your child. And this often leaves parents (usually mothers, because mothers do the bulk of care work) in the position to be an advocate for their child in many situations. So where does that put a parent who has to teach the experts about their child’s rare or unique needs? It puts you outside of the expected social sphere and solidly into unknown territory….a place very prone to self-doubt and worry. And this is also a place very prone to criticism from others. All of this can be frustrating, disheartening, and lonely.

The sense of isolation that advocate moms feel is not necessarily from lack of knowledge, but from lack of support. It can be really hard to be in a position which feels like it is you (or you and your child) against the world. These mothers often have their child’s medical history memorized by heart, know all of their child’s quirks and comforts, act as secondary therapists when practicing skills at home, and stay informed on all of the newest treatments for their child’s condition. These moms tend to know what they are talking about and are able to hold their own in a discussion with any professional. Sometimes they may even know more than the professional because they have had way more experience with the condition by living with it daily, but sometimes professionals don’t respond very well to being informed that their perspective isn’t quite accurate. Instead of being met with appreciation and collaboration, advocate moms are often met with resistance and disdain because their input challenges paradigms. But mothers on a mission are powerful forces...I know one advocate mom who ultimately helped researchers identify the genetic mutation responsible for her child's condition when there were only a few hundred children like hers in the world. Never doubt the potential impact of your persistence. So I’ll say this again – the isolation and doubt isn’t from a lack of knowledge, it is from a lack of support.

If nobody has told you this recently, I will: you are doing an excellent job, Mama. Way to go! Remind yourself of that daily.

Now, on to some practical tips. How can you stay in a space where you truly feel that you are doing the best you can despite outcomes that you often cannot control? Here are a few things to stay mindful of:

  1. Remind yourself that you know your child. Even when talking to experts, they may know statistics – but you know your specific, unique child. That is a strength that only you can bring to the conversation.

  2. Focus on the effort, not the outcome. There are so many variables in advocacy situations and sometimes you don’t get the outcome that you want, but the fact that you spoke up still matters. A lot. There may be changes that occur over time as a result.

  3. Know your legal rights. Are you seeking school accommodations? Be sure to read up on 504 plans and IEPs. Same with regards to medical fields, social activities, community expectations, disability rights, etc. There is almost always a legal standard regarding an issue you’re addressing. Be informed about it.

  4. Check in with yourself and ask why you’re advocating about a certain issue. Is it important to your child or imperative for care? Or are you seeking to fill a need of your own? If it’s the latter – consider taking a step back and re-evaluating your reasons.

  5. Ground yourself in research. Refer back to best practices and your child’s medical results/test scores/etc.

  6. Ask questions. Lots of questions. And hold people accountable for answers by insisting on a response or setting a follow up time to make a decision or re-evaluate as needed.

  7. Adopt a collaborative stance. You are an integral part of your child’s care team whether it is medical, educational, etc. Learn the phrase “What can we do to ensure this need is met?” and use it regularly.

  8. Remember that your child has their own path in life. You can guide them and you can be a fierce guardian of their well-being, but some things they have to experience on their own. Not every battle is yours to fight.

  9. Regularly focus on self-care. You have to recharge in order to be able to continue to advocate.

  10. Connect with resources if and when available, and involve your child in collecting information and support so that they learn how to self-advocate as they grow.

There may be support groups out there that you’re unaware of. Check out NORD or Global Genes for starters! Sometimes there are conditions which have enough similarities that parents can find that communal discussion is still beneficial as well. You might consider reaching out to Mommies of Miracles, Different Dream, Parent to Parent, or seeking out caregiver support groups also. Having others to turn to who understand the mental and emotional toll not only of caregiving but also of advocating for a child with complex needs is really crucial, because sometimes the best thing some can do for you is not to try to fix the situation but to say “I hear you. That is tough. I understand, and you’re doing a great job.”

Nobody knows that child better than you do, Mama. You were their home before they entered the world (or, if you adopted this child, they found their way to you recognizing that you're "home" just as quick as they could!). You are the source from which they drew life. You are the person who spends the most time with them and who meets most of their needs. You are the rhythm to which their days function. You know the intricacies of your child in ways that no other person can. You have been present at the appointments and through the struggles and the triumphs and only you know how to communicate that succinctly to anyone who needs to know. Trust yourself. Because even on days when your stumble or forget what you wanted to say (writing it down helps, fyi!) or at times when the outcome isn't what you'd hoped for... You are this child's mother for a reason. Be gentle with yourself.

It is okay to need to take some time to rest. Please do so regularly! But I promise, even at times when you aren't so sure of yourself and you might not notice the impact, you are making a difference in the life of your child. And ultimately, that is what matters most.

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