I have been struggling a lot lately. I have always had some mild struggles with depression on and off throughout my life. I was also lucky enough to be able to see more positivity than negativity, “look on the bright side”, and not let the struggles get me down too much. But the struggle for my family with twins with FASD is so real and so hard. Sometimes it just feels like the blows come too quickly to be able to readjust and recover as quickly or as easily, and there is always at least a little bit of a toll on me. 

Throughout my parenting journey, I have never given up on the search for whatever I can find that may help us through this. There have been many resources that I have found, books purchased, Facebook groups joined, coaching groups attended..............you get it! That is no different for any parent in the world. 

For our group of children, however, there are more aspects to consider, and you really must consider them all to get a true picture of your struggling child. Early on it involves difficulties with eating, sleeping, normal child development, sensory processing. Then when they get to school you add attention, trauma response, attachment trauma, felt safety, separation anxiety, social skills differences, and scatter of skills. Over time, these differences start to affect every aspect of school adjustment from auditory processing to memory, to executive functioning deficits to regulation difficulties and social skills deficits. Then there are all the appointments. Therapy, assessments, doctors' visits, searching for answers and diagnoses. Trying to keep it all in mind, supporting polar opposite kids who both need different special accommodations that are not usually compatible with each other is just killing me! And we recently found out that both will have to transition to new schools for this fall. Transitions are never good, and unexpected, last-minute transitions are the worst! So, this is my current state of mind, with a huge feeling of doom and gloom. 

This is not supposed to be a negative post, but as I ramble it just jumps in there. Sorry! There are many positives for us right now. My husband and I have struggled to adjust our parenting style, with a fair amount of success. We are in counseling to help with communication and differences of opinion in our parenting styles. I LOVE this job, as it is really a calling for me. There will be many challenges, but it is what I need to do. My twins have made tremendous progress in so many areas! My son struggles with that pull of peer pressure and does not always make the safest decisions. Yet he is checking in with us as requested, consulting with us for advice, and staying safe! My daughter struggles with friendships and social situations but has developed a small cluster of individual friends and has found some satisfying activities to fill her time well. Many of the aggressive, destructive, or violent issues we have had in the past are no longer happening. My twins are so different from each other that they have often struggled to be in the same room.  They are actually getting along better now! 

I know that a lot of our successes are because I have changed my parenting style and perspective. I can see my twins through a trauma lens, an FASD lens, a brain-based lens.  

This is me, trying NOT to write a long blogpost, and I am having difficulty with that!  

Anyway, I have gone down every rabbit hole to find solutions for challenges that my family has faced. I have found merit in so much that I have researched. But let's suffice it to say that it means that there are so many possibilities for the symptoms that the twins have. Is this a trauma reaction? Related to skill scatter? Dysmaturity? Auditory processing? Sensory overload? Now let's add the typical response from the typical everyone-who-knows-nothing-about-my-child-and-the-FASD-diagnosis “Oh that’s just typical growing pains,” “Yeah, my kid did that too”,” You just need to _________,” “Teenagers” and the best one yet “This kid just needs a swift boot in the butt to straighten out.” I will not go down that rabbit hole, but I think you get it! We and our children are not very well understood. So, over time you lose friends, spend less time in the community, less time with extended family and friends as you accommodate your struggling children. It is a lonely life. So, all that worry, and limited support is weighing on me right now. 

Hopefully, you all still have some people in your life that you can confide in, be raw and real, and not feel judged. I have a nice handful of people like that in my life. One of those special friends of mine is very good at calling me to check in and seems to have an intuition to call me when I am starting towards despair. Yesterday, I chose to call HER because I really needed her, but she had not gotten her ESP message that I was in need. Come to find out, I had the intuition to call her, and she needed ME this time. She shared her struggles with her now older, grown girls (in their early to mid 20’s). We shared, we laughed, and we cried. In her typical “Always there for me even when she doesn’t intend to be” way, she shared that she was listening to a TBRI podcast interview with a young adult adoptee that morning that was so inspiring. I don’t know if you know TBRI. Trust-Based Relational Intervention, Karyn Purvis, “The Connected Child,” Trauma informed parenting techniques to help vulnerable children like ours. One of the many things I reference learning about in my parenting journey. She shared the podcast episode with me and said I really need to listen to this ASAP. I did. Right after we hung up. 3 times in a row, and then listened to the one before it because it was an interview with the adult adoptees mother. So profound, so helpful, so insightful about the mindset and perspective of an adopted child. There is no mention of FASD, and it doesn’t seem to be a huge possibility, but this touches on adoption and attachment issues. There are so many other similarities in his discussion of his challenges that it is very powerful and pertinent. Here is the link for the podcast with Yohannes Aguayo. 

• The TBRI Podcast: Yohannes' Story 

So that is the shortest description of the longest and most difficult journey in my life. I have found so many great support systems online, in books, podcasts, blogs and the like. I want to share them all with you! This one had to come now because I just found it yesterday and yet it had such a profound message of hope for the future. Sometimes it is a huge struggle to find the hope.  

We need to share both our struggles AND yet still find the positives and the hope. Visit our website at massFAS.org email FASD@healthrecovery.org. We are on twitter, Instagram, and Facebook . Come to our parenting group to learn more. Reach out, reach out, reach out! To anyone that you think could be helpful. I will be detailing different books, resources and podcasts in blogposts, but it has been hard to focus my attention on that with all my not so little worries lately! Soon I will......just letting the dust settle. 

 Kristen