Want to connect with other special needs families? Come join the conversation at March 24, 2009
Try This Tuesday #36: Helping A "New" Special Needs Parent
Welcome to another Try This Tuesday. For details on how to participate, please check out the welcome post. If you'd like to join in but aren't sure what to write about, try the topic suggestion for this week: Helping a "New" Special Needs Parent.
What would you say to someone who has just learned that their child has special needs? What do you wish someone had said to you? (This can be general or specific to a particular diagnosis, and feel free to repost something if you have already written on this topic.)
Things to Remember
As I was pondering this topic last week, I ran across a blog post with a wonderful list of things for parents of special needs children to remember. I thought it was so fitting that I asked for permission to post it here. The original author is unknown, but the list comes to us by way of Mia at General Hysteria.
Remember…
1. Take one day at a time, and take that day positively. You don’t have control over the future, but you do have control over today.
2. Never underestimate your child’s potential. Allow him, encourage him, expect him to develop to the best of his abilities.
3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
6. Answer only to your conscience: then you’ll be able to answer to your child. You need not justify your actions to your friends or the public.
7. Be honest with your feelings. You can’t be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.
8. Be kind to yourself. Don’t focus continually on what needs to be done. Remember to look at what you have accomplished.
9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.
-Author Unknown
I don't know about you, but this list is something I want to bookmark and read often, even more than four years after hearing the words "autism spectrum disorder" applied to my son.
In this same vein, Mia has written beautifully about her own struggles dealing with her son's diagnosis of cerebral palsy and also shares her personal suggestions for parents in her post The Acceptance of Grief ~ The Long Version.
Personally, I will always remember what a more experienced special needs mom said to me shortly after my son's diagnosis; she reminded me that he was the same wonderful, sweet, challenging boy the day after the diagnosis as he was the day before. Nothing had changed, except that we now had a direction to go for information and help which we didn't have before.
Please join in and share the creative solutions YOU have found to your own challenges, or feel free to post your own challenge for input from others.
Topic Suggestion for Next Week: With next week being the fifth Tuesday of the month, I was thinking we could take a break from the more serious topics and share something a bit lighter. Is there an activity you've done with your child or something your child has participated in that shows their fun or adventurous side? Let's get some ideas from each other for fun things to do with our kids.
For some reason, I am seeing the Mr. Linky on the home page but not the post page. I am listing the people who linked up here so you can visit them:
As the host of Try This Tuesday, Trish shares some of the solutions she has found to make life easier and invites you to do the same. You can also find her blogging at Another Piece of the Puzzle and Autism Interrupted.
Filed under Day In And Day Out, Raising Awareness, Trish, Try This Tuesday by
Comments on Try This Tuesday #36: Helping A "New" Special Needs Parent »
Maddy @ 12:12 am
Wise words indeed. Thanks for reminding me check the ledger more often as I think we're well in 'credit.'
Best wishes
LynnEnsMom @ 12:57 am
love this site! It is like having crafts to do with other special moms, but no glue getting stuck to my fingers!!!!
Thanks. You are all gems!
Lisa @ 9:31 am
My special needs children were chosen. So many a mom can not relate..especially in the early stages. I offer words of support and some support groups I know of, as well as books I think may be helpful.
Barbara @ 9:55 am
Mia's post is excellent – with many options for parents to consider.
Lisa makes a good point – noticeable to people like me – the whole acceptance issue is different for parents who choose a child with a disability.
Almost like a marriage partner – everyday you choose to be with that person, to love (a decision). Acceptance can be a (cognitive) choice (decision), too.
Also noticeable to others, too, are parents who are still wishing for their child to not have a disability. Noticing this, other people often respond with pity.
Lisa @ 12:11 pm
Very well put Barbara. I attend a support group for moms of children who have special needs..and i think..sometimes…it's ok..for us..to feel sorry or to feel their pain..their struggles..ya know..We all are going through similar things at times..like lack of sleep, lack of good respite providers, lack of community support..etc.
The Gang's Momma @ 2:29 pm
Well, I'm a newbie SN mom and I have a question! I've been told to put together a binder (or two?!) with all of Li'l Empress's "stuff" in it, divided by categories. Where do I start? She sees the pediatrician regularly for the catch-up process of her immunizations, she sees the Int'l Adoption Clinic for check-ups on her progress, has seen OT, just started with EI, and will be seen occasionally by Sp&Lang thru our childrens' hospital. Also thrown in there is the audiologist and the ENT. I'm feeling a bit overwhelmed by all the STUFF they keep handing me to "review at my leisure" (what exactly is that, I mean when I'm not crashing from exhaustion or sickness?!) and currently it's all bagged up in a tote bag waiting my attack.
Love the list here tho. So encouraging!
Territory Mom @ 3:03 pm
I love the list. When I first started my blog I put this list together to help others. I need to add to it. I think it will help The Gang's Momma. E-mail me if you have any questions. We have to stick together.
http://territorymom.blogspot.com/2008/12/first-diagnosis-s-list.html
Jenny @ 4:46 pm
Love this list, Trish! Thanks for finding it and posting it. I wish this site had been around when we in the discovery stage of learning about Jackson's issues!
LynnEnsMom @ 6:26 pm
Hey, The Gang's Momma,you already started, even if you haven't realized it…. 3 ring binder with tabbed dividers: Adoption Clinic, regular Pediatrician, OT, EI, SP/L, Audiologist and ENT would be potential headings. Another category titled Stuff To Read or else sort and put in appropriate sections of the 3-ring binder.
And yes, you don't have time anyway. Ask Dr. D to organize it for you? then keep it on the front seat of your car so you'll have it at appointments AND be able to read at stoplights, or in the bathroom if that works better for you.
It will all happen no matter what, so no worries if you don't kick the organizing project into gear. It will just help you FEEL more like things are under control and a place to refer to when you have nagging questions or can't remember something.
It's kind of like a baby book. Nice to have but you can live without it if you have to!
Hang in there!
Dawn @Wherever He Leads... @ 6:55 pm
Great post! The list is tremendously helpful. I need to print that out & read it often.
Heidi @ ggip @ 9:19 pm
Good post. I struggle with knowing what I would say to another mom. I fear I would be too enthusiastic about how good it is to be a SN's mom. I know the reality of hardship, but still think it is good.
I have seen some disparity of adoptive parents vs biological parents views on the internet chat rooms and have to say that there in some cases at least are very big differences where one sortof berates the other (can go both ways).
Not sure where I am going with this, but just wanted to say good topic!
Kajoli @ 11:32 pm
Let go of fear
I wish I had known how beautiful life would still be 2 years ago
I was so anxious the day I got the diagnosis of Autism – thinking that I did not know my child at all – that somehow the diagnosis had changed him – Of course it hadnt . It just made me learn the ways to help him
From two of my friends some great advice I got – K and J
From K – Your job as a parent is not to fix your child but help him be the best that he can be
From J – Trust that your child will do everything .. just on their own timetable
Territory Mom @ 7:43 am
I love this site!!! Kajoli, what you said is beautiful.
We are finally in an Autism Spec. Ed. class and they teach my son the way he wants to learn. Using things that interest him. Its great. He is so happy.