“I may not have gone where I intended to go, but I think I have ended up where I needed to be.”
– Douglas Adams
His doctor assured me that he would “catch up”, until he didn’t. He was 4 and a half when he received his diagnosis. Autism, something I was so familiar with in my professional life. Something that I felt guilty about not fully realizing in my personal life.

Challenges, life is full of them. Realizing that our life challenges will always be different than their life challenges. Understanding that their challenges are going to be met with different viewpoints, different professionals, different expenses, language barriers, differing social skills, isolation, and the list goes on.

Parents who have children who have additional needs, who have diagnoses, who have a seen or unseen disability experience a variety of the same challenges that every parent face, but additional, different challenges as well. Parents often feel alone, isolated, because of a diagnosis, because of “behaviors”, because of judgment (or fear of judgement). It is not easy to find support. Finding support for daycare, daycare for an older child, babysitters for date night, transportation, therapists, medical staff that understand and listen, a safe home, employment, guardianship. What professionals should I listen to? There are so many who are giving the best advice, telling me what services my child needs to have to have a chance at being successful. What is my say? How do I know if I am making the right choice? How will the Professionals look at me, judge me, when I tell them I did not follow their advice, or their recommendation. Who reminds me that I am, in fact, the expert of my child? Then the issue that every parent wants to avoid as long as possible, who will care for my child when I no longer can.

This is not what I thought life would be like, not what I thought his life would be like. These are not the struggles that I thought my child would have. These are not the life challenges that I thought I would ever need to prepare for.

Ambiguous loss is a loss that occurs without closure or clear understanding. This kind of loss leaves a person searching for answers, it often results in unresolved grief. Knowing that there is a term for this feeling of grief that one experiences when receiving a diagnosis can be relieving. Having an awareness that the confusion, the sadness, the worry is all attached to this term called ambiguous loss; provides people with hope. Hope that they can work through these emotions, hope that resiliency can be built and that they will be able to navigate through this life of unknowns. It allows you to give yourself the permission to feel these emotions. The permission to say I need help; I need more people on my team, and it is OK to need a bigger team.

If you find yourself in this stage of life, realizing that you would like to expand your team, feel free to contact us at 605-271-1199 or contact@linkingthegapsd.com. Services are offered in person, or via tele-health statewide.

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