"We have a long way to go in terms of seeing how my son is doing," says the mom of a young child diagnosed with Angelman syndrome. "I've joined some Facebook groups, but have trouble putting my true feelings on display. Those feelings being that I'm a big puddle of sad and confusion lately. I realize I probably need to talk with someone professionally, but I would also love to know what other working parents did/felt/tried to get through the early days. Any advice would be helpful right now."
So many of us have been there. My first year with Max was one big haze of sadness, with occasional bursts of sunshine when I let myself take comfort in his cuteness.
I was relieved to return to the office after my maternity leave. I've always enjoyed my work as an editor, and I needed to sink my brain into it. I refused to feel guilty for leaving Max at home with a sitter; I knew I'd be a better mother, not worse, if I had the balance of work and motherhood. Our sitter and the Early Intervention therapists shared what happened during the day in a notebook, and I'd occasionally organize conference calls with all the therapists. I was lucky to be able to work from home on Fridays, so I could take Max to aquatic therapy and use the extra hours I saved from commuting on getting house stuff done.
I found it a relief to occasionally duck out on my own for a few hours, to hang with friends or just wander the aisles of Target and CVS. I readily accepted offers of help from family of friends to do laundry, bring food over or research stuff that would help Max. And I found it a relief to connect with other parents online and learn about stuff they'd tried, and to look into alternative therapies; assuming whatever control I could in a situation where I generally felt helpless offered relief. I also saw a therapist for a few months.
What got you through the early days of your child's diagnosis? Share your thoughts and help another mom.
For me, it was talking to and hearing from moms who had walked this path before me. It was seeing them thrive despite what I had perceived as devastation. It was getting the message that there's hope and happiness. Above all it was learning that I/we would be okay.
ReplyDeleteDefinitely connecting with other moms and finding the one that I could really connect with. My daughter is 18yo and there was no Facebook to connect there. But in recent years, it has been a great place to connect along with blogs like this one!
ReplyDeleteI'm also a mom of a child with Angelman Syndrome. For me, talking to other parents of kids with AS early on was too much. I talked it through with my therapist, my husband, and a couple of friends whose kids had other developmental disabilities. I was most sad when I was imagining the future for my son--what would it be like for him when he is 12, 20, 30, 60? The thing that always grounded me (and still does--he's starting pre-k this week and thats a whole other round of anxiety) was spending time with him--enjoying the sweet, lovable, smilely kid.
ReplyDeleteIn terms of telling people what was going on, the prospect of having the diagnosis conversation over and over again (I cried every time I talked about it with someone else for months) was awful, so we sat down and wrote an email to our friends and family (including work colleagues) explaining the diagnosis, our approach to it (not to lower our expectations of our son), and what they can do to help (supporting our efforts to include him in all aspects of community).
Prayer. Like Karen it was too hard to talk to other parents of kids with DiGeorge Syndrome(a primary immunodeficiency disorder) when my daughter was diagnosed 15 years ago at 4 days old. However when my 7 year old son was diagnosed with autism at 20 months I found it very encouraging to talk to other parents.
ReplyDeleteI think it's a process I'm still going through, as each day brings new challenges. It was a slow process for me rather than a surprise Autism diagnosis. I knew. I knew he was falling behind developmentally, I knew something wasn't right. When he started speech and OT prior to an official diagnosis, I knew. When my husband insisted everything was fine, I knew. When other parents told me it was normal for boys to start talking later than girls, I knew. I just knew. When I received his diagnosis officially 6 months ago I think I surprised the doctor with my lack of emotion and tears. I already knew. Of course knowing and experiencing and living with it day in and day out are different things. Logically, I know. I know my son, I know he will be ok, I know he has exceptional strengths. I find these days as we transition from toddlerhood to being a little boy increasingly more difficult as his differences are becoming more apparent both to other parents and children. Each day brings new challenges, and I'm sure that will continue. I suppose I just take it one day at a time.
ReplyDeleteI agree with Nora, I took it one day at a time. I focused on keeping my baby alive for that day. I enjoyed the baths, the cardboard books, the silly songs, the tiny clothes...no matter what was lurking down the road, I had today. I didn't have the energy to react to things that might never happen, and I knew when something came up I would deal with it then.
ReplyDeleteOne of my sons Noah was born with SB. I learned that he had it during my pregnancy 20 weeks. Looking back, I'm glad I got a prenatal diagnosis as I had time to mentally and emotionally prepare myself and my partner Connor. It is not as bad as I thought. Both my boys are now 1 month old and I've fallen in love with them. I take it one day at a time as well.
ReplyDeleteFor me the early years were all about survival. My son had a massive bleed on his brain when he was 5 weeks old. His whole brain was affected and he had/has damage to most of his brain. The first two years, he constantly cried and screamed. Most things caused him stress and pain. I searched for therapies to help him. We did fundraisers and went far doing different alternative therapies to help him. I was on a mission to help him but I eventually had to calm it down. Talking to other parents and being on different yahoo groups really helped. I learn so much form other parents. Today he is almost 10 and a very happy boy. He has come far for him but he will always be a total care child. He cannot do even the most basic things. Now that he is in school, I have a little relief and have been able to have a little time for me. I still grieve for the child I was supposed to have - but am totally in love with my son and see such beauty in him. I will always wish he didn't have to go through what he does and still often goes through. But his spirit and strength is amazing. Most days I am fine. I mostly focus on today and the immediate future. When I think about his future, I get scared. I worry that I will die before him and then who is going to properly love and care for him? I worry that once he is done with school there will be nothing for him to do. He will not be capable of any type of work. I worry about how I will lift him as he gets bigger. It can be overwhelming. Oops didn't been to go down the future road. :)
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ReplyDeleteI use the SBC forum its a fantastic resource. Also BC SB Kids forum is another resource I would recommend. You can connect with other moms of kids with spina bifida and get questions answered. The SBC was a lifeline to me in the early days after Noah was diagnosed with MMC a type of SB.
My daughter was born 39 years ago. She was severely brain injured in the birth process. Her inability to suck meant there were huge problems with feeding, and at 7 months her delays in development were diagnosed as cerebral palsy. Her pediatrician referred me to Easter Seals and we started PT, ST and OT several days a week. This was where I met the other parents who became my lifeline. We shared our stories, not just about our kids, but about our lives now that our lives were different from those of our families and friends. sometimes the therapists would sit in or invite a psychologist to join us, but we were most comfortable with each other because we truly understood what each of us were facing.
ReplyDeleteMy daughter died a month after her fifth birthday and my friends were my greatest support. They understood I wanted to be around their children to help with my loneliness. They were also the ones who truly understood my decision to adopt a disabled little girl a year after Sarah's death. I had the skill set to give her a good life, and a strong support system to lead me through the challenges of parenting a special needs child.
Today Amber is 36 and still lives at home with me. She attends a day program where she has friends, enjoys community outings and volunteers each week. We have moved twice, once Going South, then to CA. We have made new friends along the way, but some of those first friends are still part of my life.
When Sarah was about two and much of this was still new to me a business associate asked me for advice for her sister who had just had a son with spina bifida. I told her that her sister needed to find other parents of kids with the same diagnosis. Hopefully her doctor could help, or the place they went for therapy, but if she had no other options, I said she should put an ad in the local paper seeking other parents. I have given the same advice many times over the years because I truly believe in parent-to-parent support to provide what family, friends and professionals cannot give--shared experiences.
Prayers and a online support group of moms of kids with spina bifida too. Those are what helped me cope in the early days. I can see that other parents are going to be the best source of information and support. In a way I'm glad for the Internet it's helped me connect with others who have been where I am now.
ReplyDeleteTeresa my son has Spina Bifida too. His name is Noah.