When you are the parent of a child who has a disability you can feel isolated. You begin to not go out, to not seek friends and scared of judgement. You don’t complain, because you fear people will think you are not a good mom. You try to promote your life as a Hallmark Channel movie and not a Halloween one. Then the holidays come and you are slapped with the face of reality. How to get through the season when you feel so alone and trapped in this unexpected life. Continue reading
Boo is in an integrated preschool. A school where for every child that has a disability there is one typical child. The disabilities range from autism to ADHD to Down Syndrome to Cerebral Palsy to Boo. At a quick glance at the class you might not be able to tell which child is typical and which child is brilliant.
Which is the whole point of the program.
Okay maybe it isn’t the whole point. However the point could be made that by exposing our children to typical will allow them to grow social skills that come naturally to their peers. The peers learn empathy, patience and that not everyone is the same.
All good, right?
Except the other day when it wasn’t.
My friend was walking into school with her child. Behind her another mother was walking in with their own. She heard from behind her, “who’s that”?
The child replied, That is X. He doesn’t talk.
Instead of letting it go or saying something….ANYTHING positive the mother was heard shushing her and saying “that’s not nice”.
Here is the thing. What the girl said wasn’t wrong. It wasn’t mean. It wasn’t “not nice”. It was true. Kind of. X can talk. But he has autism so you have to be looking at him and engage him for him to talk back to you.
X’s mom left feeling like her son was weird. Like he is misunderstood. This one place in the universe (outside his home) was supposed to be the safe place for us. A place where our child is accepted for who they are.
I adore Boo’s program. I love each and every one of her teachers and therapists. But I worry they might be missing an important component. I understand privacy laws and all that crap. However the typical children should be made aware (in words they understand) why X doesn’t talk to them. Why Boo doesn’t play appropriately with them. Why oh why in words a young child understand all children are not the same.
That all children, typical and brilliant are all special in their own way.
I am sure they do teach it. But the other day the lesson was lost and a mom went home feeling her son was weird. I think there needs to be more done. More parent teaching. Yes, I know we cannot get parents to come to a PTA meeting who can we get them to an inclusion training?
There is an answer somewhere. It starts with the letting the children teach the parents. It doesn’t stop at an integrated preschool but an integrated school environment. One where every day there is a brief moment of education of those with challenges. Awareness helps but until you ask you do not know, so you guess. It’s perfectly normal. Being aware is knowing autism exists. Being knowledgeable is knowing what autism is. We need to let inclusion bring more than awareness but knowledge.
If we can not let a 5 year-old ask the question, how can the 18 year-old know?
Today I would like to introduce Lizzi the author of Considerings where she actively tries to find the good in life. A blog that is sometimes fiction so good you think it is true, some days full of humor and some days despair. It’s a wonderful mix of writing and feelings. No matter what Lizzi faces each week she is determined to end on a high note with her Ten Things of Thankful post. A wrap up each Saturday where she sees the light in all of her clouds.
Thank you, Lizzi for your honesty with your challenge. All of us find moments of despair. When it gets too much. When you wonder if that shiny bottle will dull the pain. Trust me, it just makes you puke if used for that purpose. There are so many challenges interlinked, as Lizzi has shown. But there is support out there for just about anything you are facing. This virtual world is sometimes all you need to realize you are not alone. I’m glad she still sees the hope in all the clouds.
What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firstname.lastname@example.org
I’m semi-participating in a Summer Blog Hop Challenge meant to show others how the life with a disability, or with a child who has a disability, is a journey. A never ending one, for sure. But a journey filled with triumphs and some tears. Of course per my usual
stick– to-break-the-rules reputation instead of starting in week 1 it is now week 3. So today we are starting the journey half-way through with a letter to myself. Even though that was week 2’s prompt
Dear Younger Me,
I was going to write to the much younger us. The one who is upset because our first love left us. Or the one who just met David and thought um….not my type but sure let’s go to dinner. To the younger us who on the eve of her wedding and asked David to elope instead. Or to the new mom to Abby who was scared out of her mind at this thing that wouldn’t stop crying and tell you eventually she would no longer seem breakable.
Instead I am writing this for you to receive after Boo’s birth. She is now four months old and you are thinking Holy Crap not only did I just get puked on from my neck to my toes I am getting a letter from the future. You are also thinking I’m writing to give you good news except you know us by now and realize maybe not.
First I want to tell you that Boo will survive. You can cry and breathe and rejoice. Now the other shoe dropping on your head is me telling you she will survive but it will not be easy. I am not writing to tell you what will happen. Because no matter what I write it either won’t change things or worse give you the magic answer you are looking form. Rather I write this to the mom of four-month old Boo to give you some advice.
Now you know it is really me, right?
Well here it is:
Never listen to a doctor, a nurse, therapist or school teacher that Boo cannot do something. There will be a doctor or two you will want to punch in the nose, but you will refrain from harming them.
Pay no attention to someone who says that Boo is just like their daughter/son/grandchild and “will grow out of it”.
Never give up hope. In yourself or in Boo.
Do not ever, for one minute, stop searching for an answer. Do not listen to the doctor who says just accept Boo for who she is. It is too important. You and she need the answers and being an unknown neurological syndrome is not an answer.
Keep Early Intervention. As awful as it is you will need them when she is three. But do not listen to them when they say she does not need Spaulding Center for Children. You are right they are wrong and they will deal with being offended.
As much as you have to fight to make Boo all she can be, you will spend more time loving her than fighting for her. She will impact not just your life but those around her. Boo is making a difference in this world one smile at a time. You just have to get through the what seems to be unending puke phase. But I promise it does end.
You know all the friends that say “let me know if I can help”? Here’s the thing they WANT to help. You have to TELL them how. Instead of waiting for them to call you, call them. Say I just need someone to come over and sit with me. Call them and say David’s home do you want to go to the canal with me. Call them and say I’m drowning and just need a friend. Cry and laugh with them. You will be amazed at the support just waiting for you. Your future self knows she waited way too long to reach out. Once you do life will become so much easier and less lonely.
Remember that David is there and he is your partner in this unexpected life. Don’t wait so long to include him in Boo’s therapies (yes, there is more than one). You will be amazed at how well he does.
Lastly, give yourself a break. You are allowed to feel tired and overwhelmed. You are entitled to feel like this just isn’t fair. I promise you that this life becomes easier. You will one day brush your teeth before dinner time. You will one day wear a shirt without Boo’s remains on it. You will be amazed at her journey.
I won’t spoil the good parts for you. Be prepared to be amazed.
Older (but less tired) Me
PS–oh and don’t worry you will not cave and buy Abby a pony.