Saturday, April 11, 2009

What to Say

I’ve been putting off this blog post for quite a while now. Procrastination has always been a problem for me. But I’m sure most of you will understand. Bennett has made tremendous progress in so many areas but one. He can’t or will not speak. Not a word. He makes noises, lots of noises and he can sign – lots of signs. He is very good at communicating what he wants. But he does not speak and nobody knows why. It could be a motor issue but he’s always been a great eater – no problems with biting, chewing, swallowing. He no longer drools – we gave up the daily bib more than a year ago. It could be that he has damage to the part of the brain that controls speech – apparently it’s hard to tell.

So, we don’t know why he can’t speak. What’s extra frustrating is that he has said some words – words like – mama, dada, ranma, ranpa, mummu, poppa, bath, bum, snow, more. He will say them a few times and then stop and we might not hear them again for months. In spite of the lack of spoken words, he continues to develop his language skills. In fact he has always tested as age appropriate when it comes to receptive language. This is a good thing and on most days it’s the only thing I’m hanging on to.

Recently Bennett was assessed for a communication book and device. He received both on Thursday. Now, we have to learn how to use them. I was worried that the book and device would be too much but all of his therapists agree that he is ready and capable. He is the youngest child from our Children’s Treatment Centre to be given a communication device. Despite the fact, that I wish we didn’t have this machine in our house, I’m looking at it as a good sign.

People often say to me that he will talk one day and that when he starts, he won’t stop and I’ll wish for those quiet times again. I know they’re trying to be kind but as any mother of a non-verbal child knows, the desire to hear your child’s voice is so strong that you can’t even begin to describe it. The fear that he will never speak literally takes my breath away. I haven’t given up - I hope I never will. I know that he’s only two and still has lots of time. I have heard many stories of late talkers and they do give me hope. Although I know that just because something happens for someone else doesn’t mean it will happen for me. But, oh, how I hope it does….


AshleyS said...

praying the talker works for now and encourages Bennett to use his own voice!

Anonymous said...

I think you have ample reason to hope. And you can quell your own fear if you choose. It's not easy, but imagining the worst case scenario might be counterproductive for both of you.

Looks like you have some excellent professionals working with you. I know you have excellent family. :)
(other) Barbara

Dawn said...

Barbara - Try to embrace this as a positive and we will continue to hope and pray that he doesn't need his talker for long. He sounds like a very smart little boy and I'm sure he will be thrilled to be able to communicate in this way. Being his receptive language is so great I bet he becomes a master of this in no time!

Lisa said...

Bennett has learned to crawl, walk, run, climb, stomp, smile, laugh,cry,scream, eat on his own, stop drooling, dance, sign, cooperatively play with others, demonstrate love and affection, give hugs, show kindness,show others what he wants, likes or does not like, wave hello and goodbye, is progressing in potty training, figures out how to work all his learning toys, speak a few words off and on, and I'm sure I missed quite a few other things he has learned to do - all in a little better than two years!!!!!! Wow!!!!
That is progress, continous progress!!!!! Most of these things we worried he would not be able to do - but he did! All of these things are affirmations of what he is capable of and what is to come. He will speak when he is ready and with a little help from a great team of caring people,exciting tools and belief.

I believe.

Auntie Gates

Popcorn House said...

I know that you hear "stories" about late talkers, but I will tell you about me. I did not say ONE word until I was three. My mom tells me that my sister talked for me but I didn't talk. I went to speech for years and years and YEARS. In the sixth grade I was finally discharged, and I was sad. I loved speech. Anyways, you don't know me in real life, but I am quite verbal. As my mom said once I started talking, I was talking FULL sentences and a mile a minute (which is why I kept going to speech...I talked too fast and without thinking about what I was saying). My mom said I certainly made up for lost time.

Whatever happens it will work out. Bennett is a smart little guy and I really think it will just click for him.

Bonnie said...

Hello B, B, J, & M:
Thank you so much for this blog. I can certainly hear the fear and pain in your writing Barbara. Mothers will always want the best they can for their children. How blessed Bennett is to have been given you and Jim as parents and to have his wonderful grandparents and extended family - and what a blessing to have Bennett in our lives! This little boy has much to teach us. Have you heard much about Indigo children? These are children, many of whom are born with additional life struggles - who also have an innate wisdom and intelligence that is beyond their years. I often think the Bennett is one of those Indigo children.

I noticed when Bennett was at my house that he was very receptive to language, understood everything I said to him and repeated it in sign. If he makes sounds, I am confident he will speak - one day. He is very intelligent - so his processing skills are right up there - or beyond normal.

One thing that might help is if we focused on surrounding Bennett with healing love and energy. All of our thoughts, actions, and words bring with them energy fields - so if we all focused on this and consciously did this throughout our day, I think we'll be surprised with the progress he will make.

Lest you think this is flaky - they have done research where they have taken two glasses of water from the same source - and examined their water molecules. Both looked identical. They then labelled one glass "love" and the other glass "despair". The glass labelled "love" began to spontaneously form beautiful crystal shapes with the water molecules. The glass labelled "despair" had its molecules move to more chaotic and unconnected forms. So - - all of this to say - - that everything we think, speak, or do does impact every aspect of our world.

On that note, I will be surrounding not only Bennett but your entire family with healing energy and light. It's not easy to hope for something that we don't see coming to us very quickly. That's when the loving support and prayers of family and friends will carry us through. So - - you are all on my prayer list (it's not as if you were ever not on my prayer list!).

Lots of love on this beautiful sunny Easter day,
Auntie Bonnie

grandma and grandpa said...

there is not much left for me to say that hasn't already been said on today's comments. I agree with everyone. We are very fortunate to have such a wonderful grandson.
Like you, Barbara, I wish I could understand what he is saying when we go on our walks. He points and comments on everything he sees and hears. I try to interpret what he says and take our "conversations" that way. He sure lets me know if I'm wrong in interpreting what he is saying.
However, he is very forgiving towards his grandma when she fails to understand what he is saying.
I love those walks and I'm looking forward to having them more often. Unfortunately, for me, he walks FAST! I just hope that I can keep up with him this summer! Lol.
Lots of love, hugs and kisses
Grandma and grandpa

Amy said...

Good luck with the new device. I'm always told that talking is the most wildly varying milestone, it's not unheard of for a 4 year old to be just starting to have plenty of reason to keep on hoping.

Mummu and Poppa said...

Greetings Everyone!

Everything that has been said is so true.

Bennett, you are an extremly bright boy with many God given talents (remembering as Auntie Gates said - there was no sitting, standing, crawling, rolling over, etc. - and look at you now). You are such a going concern and we are so grateful for everything you do. Every visit brings something new and we are pooped out at the end of the day but we wouln't change it for the world. We can't imagine our world any other way.

Just try giving you something you don't want (tylenol) ... or turning off the TV before your program is finished ... or trying to carry you down the stairs when you insist on walking. You certainly make yourself understood. A little 'attitude' at times never hurt anyone and it is so good to see your emotions coming through. For now, non verbals let you get your point across. We are all so in tune with your 'sounds' and 'signs'. Bennett, you just continue to make our day.

Mummu has also looked into the Indigo Children. PBS has done a special on them. They have amazing talents and they sense that they are special and since much is given to them - much is expected of them. Very interesting. I too thought that Bennett had some of their characteristics. He can sense a person in need of a smile (as I stated earlier on this Blog - the man at McDonald's that he 'sounded' to and the man in line at Wal Mart that he just reached out to and touched his arm in friendship). This might not sound like much but we could tell how touched these two people were by Bennett. Words are not always necessary.

We, too, know that Bennett has a beautiful voice because we have also heard him speak.

Bennett is also very taken with music - songs and nursery rhymes. He focuses totally on the person who is singing to him. I believe that this is because of the lilt in the music voice that sounds most like his uplifting sounds. Let us not forget his dancing and 'conducting' to the music on the radio.

We could 'write a book' of how wonderful you are Bennett and how you bless our lives each and every day.

Mommy and Daddy just have to look back over the day they heard the words Cerebral Palsy to see how far you has come and they have come.

Prayers don't hurt anyone and God knows that Bennett is sourounded and uplifted for continued 'good things' in his life and in turn our lives.

Always remember that all our needs come to us in God's time - which does not necessarily coincide with our time.

We joke that when Bennett does speak we will not get a word in edgeways and that will be super!!

Hang in there Mom and Dad
... Bennett's day will come!!

God Bless everyone!

Mummu and Poppa
xxx ooo xxx ooo

Kiera Beth said...

Barbara - This was a beautiful and brave post. My hopes and prayers are with you as you continue through this journey.

We hope with you, Jim and Bennett. You are one of the strongest people that I know and I am always so impressed with your bravery and honesty. Bennett has an amazing family!