It takes a village
I recently took a physical for life insurance purposes. My nurse was kind and polite and when I was asked why do I take an anti-depressant when your otherwise healthy? I simply replied “I’m a special needs parent who’s always advocating, teaching, learning, researching, and loving my family I have to cope somehow.”
The look of surprise that crossed his face was something that I’ve seen before. I’ve had people ask me how do you do it, deal with autism, ADHD, ODD, SPD, and a genetic neurological disorder that affects everything from motor skills, to recessive language delay, to selective eating issues due to textures, smells, and shapes of food.
I have no other answer other than I don’t think about it I just do it. All of it needs to be done always. I need to advocate for my children so that they can have access to resources, funding, and therapy inside the school system and outside within the community. I need to keep up with the latest research on my son’s genetic disorder so I know how to help him specifically and what other co-morbidities I need to be aware of. I also need to teach him about number and letter recognition so he can begin to print what he knows. I have to deal with regression as it’s the part of his brain that’s affected by his micro-duplication.
I need to check, double check and help my son re-learn when he’s lost his ability to process what he’s learning in school. He’s come a long way with his progress from screaming if I tried to help him hold a crayon in preschool to printing his name confidently in elementary school. Now his world’s growing bigger as he attempts to make sense of all those letters on the page and learn to read. I remember what joy I felt when my Mom introduced the magical world of books to me.
I long to see that light in my son’s eyes that I know appeared in mine. Yet I see him stumble on three and four letter words and in frustration throw the book across the room. At the moment we’re working on his reading comprehension so that he can create the story from what he sees illustrated on the page. As for the phonics and word recognition I’m using a multi-sensory approach as well as his special education resources teacher does in the classroom.
1. First I print the word then I get him to to tell me the letters and we sound it out and say it together.
2. Next I have him build it with his alphabet letters on the line below.
3. After he prints the word with his pencil.
4. Then we go over the word and use it in a sentence and repeat with the remaining words.
Sometimes he only has enough patience for three words but to me it’s quality over quantity. I learned the Write, build, print method from an amazing website called Understood. I love this website as I now have a resource that’s there to help us both on our learning journey.
When I see the furrow in my son’s brow as he concentrates to maintain his alligator grip on his pencil I marvel at his independence. He sings a little song as he does so. Alligator grip then my pencil doesn’t slip. Then when he’s completed his task his beautiful smile makes his whole face light up. I’m excited to incorporate building Lego into his learning as we work on math next.
I have five months to prepare him to catch up with his peers and continue onto the next grade. He has an excellent team at school who’ve been there to help with his frustrations, transitions with the use of visuals and successes. My son teaches me just as much as I’m teaching him this why I choose medication for myself and seeking the guidance of a therapist.
No parent is an island and it takes a village to raise a child. When it’s a child with special needs it takes strength, courage, and a bigger, non-judgemental village. I need to be able to cope with this roller coaster of a life we lead. I need to stay on task and ten steps ahead of a sensory overloaded meltdown. Most importantly I need to take care of myself and repair what I feel is broken. My mental health and the well being of my children depend on it.
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18 thoughts on “It takes a village”
What a lovely, honest post.
I have to say, I really, really respect your choice there (re antidepressant) and wonder if a similar approach might help me, not to mention many of us parenting special needs kids, with all the extras that entails, both practically and emotionally. I think I do sometimes experience “situational depression” and burnout, and have wondered just how much higher those rates are for our situations…
Even the way you describe working with the learning process – extraordinary, wise…grueling.
I’ve had to watch my drinking and sugar intake – both forms of self-medication – since this whole parenting thing has progressed.
Thanks and love,
Full Spectrum Mama
Oh Mama we advocate so much and with such tenacity that we tend to forget about our self care or we’re just too exhausted! Honestly making that decision to medicate and seek therapy has been the best decision I’ve made in my life in the last 5 years. I really admire and love how you describe it as situational depression. I believe that sugar and alcohol are what I need to be mindful of as well. I’ve drank my sorrows away and stuffed my face with cake until I saw the error of my ways as the number on the scale shocked me into reality. As a special needs parent are self care is mandatory just as our advocacy for our children. Slowly but surely I’m relearning that I applaud you for taking care of you. Much love and respect to you. ❤️
Every time I read one of your posts, the more amazing you become. The dedication you show your children is remarkable. My stepson had special needs growing up and we didn’t have or know about the resources available today. He has DAMP, something I think I have but not as severe as him. and it was a struggle, especially in school. They refused to put him on the special needs register which was a big mistake in my opinion. He’s 19 now and working as a bartender and doing well. I guess what I’m saying is that there is a light at the end of the long tunnel. Keep up the excellent work.
Oh Mike here I am reading this with tears streaming down my face. I thank you so much for your kindness and your beautiful compliments. It’s amazing just how resilient children with special needs are. I can have stressful days, tear filled moments, and feel sorry for myself. I don’t give up because I was raised to not know how to do that. And my sons they keep fighting for every success and leap over whatever hurdles that are in their path. I don’t give in to my pain because they teach me what resilience really is. I’m glad that you and your step son have managed to have a good life despite the medical condition you share. I don’t know what the future holds for my youngest son but whatever it is I know he’ll put his heart and soul into it. ?❤️
That’s all you can hope for. You deserve all the compliments Jeanine.
Well bless your heart thank you. ?❤️
For me- it is monthly cognitive therapy…due to the very real side effects I have with any medication including Tylenol from some of my other chronic illnesses…and I have been in cognitive therapy for 12 years and can not see my life without it and do not know what I will do when my therapist retires. You are right- we need coping mechanisms living in a world that is not conducive to either us ( I have aspergers) or our children with unique wiring. My one son has multiple learning disabilities and he is ten and doesn’t have that writing that yours does. I am not worried but hopefully it can help you feel better that his own pace will do…although being in school with all its rules and milestones is stressful (I chose not to go that route- too stressful for myself) My son is amazing at other aspects of life and I know he will still succeed despite his struggles…and we obviously find ways around this. He is just beginning to find the joy in reading audiobooks and writing his own with voice text. It’s different from what I went through (I had dyscalculia and could not and still do not understand math) but I was a natural at reading and spelling…
It’s hard to see our kids struggle in this society that isnt set up for them. It’s hard to be the parent that often feels isolated in understanding…and then we must build our own understanding. I love my life and my children…But it took me years to get to this point of acceptance and many counter cultural decisions along with some coping mechanisms. I am glad you found what works for you:) Your child is lucky to have you.
We live such similar lives Kmarie, thank you so much for sharing. I also have dyscalculia and struggled a lot in school. My teachers thought I was defiant but my Mom also struggled as a child so she couldn’t teach what she didn’t know. My teachers were only as patient as they could be because I excelled in reading and writing like you. A lot of them just thought I wouldn’t apply myself to mathematical tasks but I couldn’t understand the easiest concepts of the opposites (addition and multiplication I understood subtraction and division I didn’t) I participated in CBT for a year with two different behavioural therapists. I really loved the affect it had on me and my psyche. Then I relocated due to my husband’s work and I’m on a waiting list to continue with therapy. I sought out the help of another therapist that has spoken to me about somatic therapy. I’m intrigued by it and look forward to researching it more. It took a long time to get my son to print letters as letter recognition came easier to him with his strong rote memory skill. He also loves audiobooks, especially the interactive ones I have on the iPad. I’m so glad that your son has discovered them as well as talk to text. It’s so important for our children to gain their own personal successes. I know things will be different come high school when a majority of print will be digital so we also work on keyboarding as he can recall the letter placement. With his genetic disorder I work to help him with his frustration with his regression tendencies. His strength is in seeing patterns, shapes, and designs. He can focus on spatial awareness now where as when he was 4 he couldn’t. He’s grown in leaps and bounds and I’m proud and cheer him on with his accomplishments. We work a little more on things that are difficult for him with love, patience, and fun. Everything we do is infused with adventure and joy or it’s for naught. Thank you for the beautiful compliment it feels so good to read that and feel it’s meaning. Your children are very blessed to have you as well. ?
Yes we do sound similar…thank you 🙂 And I hope things continue to feel inspirational and good.
You’re welcome I’m feeling positive about the direction things are going now. ?
magnificent points altogether, you just gained a new reader. What could you recommend about your post that you made a few days ago? Any certain?
Thank you so much I really appreciate it. What I recommend from my post is if you suspect your child has developmental challenges always reach out for help. There is loneliness in being one, but strength is gathered when there’s many.
“No parent is an island and it takes a village to raise a child. When it’s a child with special needs it takes strength, courage, and a bigger, non-judgemental village.”
You impressed me by your inner strength in raising your children. It must be very stretching and challenging.
I share your view on parents NOT being an island. Truly, it takes a village — a supportive, non-judgmental, loving community to raise one child. And usually, that’s the most difficult part. Because we cannot wait for a “village” to reach us out, we need to create our own village. And that’s not easy. It requires extra strength, courage, and wisdom… and many other virtues.
Keep it up! You’re doing a great work of love! ?
God bless your ministry!
Thank you Nholie, for the beautiful compliments. Being a special needs parent is by far the most challenging and rewarding experience I’ve ever had. It has helped me grow and stretch my mind and limitations more than I thought possible. I’ve had to create my sons village through finding other families living with autism and therapy teams inside and outside of school. It’s been hard because our life was quite private before I started to open up and except help. Now my son has grown in leaps and bounds and I’m grateful I took that initial step to building his team. His love and smile is all I need to know I’ve done the right thing. ?❤️
Found your blog on Dray dream big meet and greet! Love that he does that because it is how I find a lot of similar blogs to my own. My daughter and I(Mostly I) blog about our life with her ADHD and anxiety. (As well as Photography and Book reviews, but I will be separating that soon) We felt like we needed to share our story of how we deal with her every day, sometimes gracefully, sometimes not!
Love your blog and will be looking forward to your posts!
Thank you so much for finding me Mama! We live with those other letters as well. ADHD/ODD/anxiety and all hyper fuelled by SPD! I love the name of your blog because truly that’s how we have to be when hyperactivity motor drives your child. I look forward to discovering your blog as well. Thank you for stopping by. ?
Yes I am pretty sure she has the SPD as well. Her new medication seems to help with that some!
That’s wonderful you find it helping. I have strict rules about keeping my son on a “sensory diet.” As well as having scheduled body breaks at school. He needs to move to learn and we’re in discussion about medication with his paediatrician.