Have you read the beautiful letter entitled “Welcome to Holland” by Emily Perl Kingsley which she wrote to describe raising her son with Down Syndrome? It has become the positive letter that parents with newly diagnosed kids have read to counterbalance the often bleak prognosis they receive about their child’s future.
I think this is a beautiful letter and agree with the spirit in which the letter was written. I am generally an optimistic person that aims for a positive outlook. When my son was diagnosed, I really wanted to hear advice that I could use immediately.
I wanted to hear from other Moms that were living the life that I was living and could give me real life insight. With that in mind, here is what I would tell someone with a newly diagnosed special needs child:
I know its overwhelming right now. Maybe you feel disbelief, anger, grief or all the above? There were days I didn’t know if I was going to be able to make it out of the house because I kept crying. My only goal was to make it through the grocery store and get home before the tears came again.
We all go on our unique journey to find our way and to help our child. You will learn a lot of acronyms (SPD, ATEC, GFCF, SDC, etc) and have new vocabulary (sensory, vestibular, echolalia, etc) thrown at you. There will be many different therapy options and places for your child to receive services that you will learn about.
Here are some things to consider:
1. This is still the same child that you had before they received their diagnosis. I know this sounds simple but it’s a reminder that I needed for myself. I look back at some of the pictures of my son when he was first diagnosed and I feel like I missed some of him because I was so focused on trying to “recover” him. If I could travel back in time, I would tell my younger self to really see and enjoy him for the fun kid that he was because the years will fly by.
2. Find a support group, you can usually find one through your local regional center or non profit that specializes in helping families with special needs. In my area, Parents Helping Parents is the non profit organization that supports families with trainings, support groups, sibling groups and even a library. There will be other parents there that will have a wealth of information on school districts, IEPS, therapists, resources, etc.
3. Talk to other Moms that you meet in the waiting room. I met women that are my friends today while chatting in the OT’s waiting room.
4. Listen and learn but don’t judge the Mom next to you. One of the greatest things that I’ve learned on this journey is that you don’t know what another Mom is going through. Also something that you don’t think you will want to do with your kid today, may be something that you may consider down the road.
5. Make time for the sibling(s). Try to find time each day even if its just 15 minutes, to focus on your other child. It’s easy to get caught up in the needs of your SNK (special needs kid). Your other child needs you too.
6. Get help, if you have family nearby that can help you that’s great. I didn’t have family around so I found a high school student to help me as a mother’s helper for a few hours each week. This helped keep my sanity at this point in my life.
7. Take care of yourself. We tend to put everyone’s needs before our own and carry the weight of the world on our shoulders. I need this daily reminder to get a decent amount of sleep each night and to do something that feeds my soul or I go into what I call “Crazy Lady” mode. And it’s not pretty. I will cover this further in future posts.Want more ideas on little things that you can do to lead a greater life? Sign up for my newsletter at the bottom of this page.
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