Every family is special and unique however there are some families that have a family member, or members, who have a special quality or feature that makes them and their family especially unique. Whether it is that they use a wheel chair, have special dietary needs, have an extra chromosome, require assistance in some way, etc.
Throughout the year I would like to highlight these Extraordinary Families, making the focus on how the individual(s) in their family is truly unique and special and how the family has adjusted, appreciated, and even embraced the quality that others may otherwise approach timidly. I would like readers to become educated and hopefully pass the information onto their own children. So, one day when their child is introduced to another child that has a unique quality or characteristic they will hopefully be more understanding and considerate.
Please take a moment to read about an Extraordinary Family who is dealing with Childhood Apraxia of Speech.
I have had the pleasure of interviewing a local mom, Marisa who has been married to her loving husband for 9 years and has two gorgeous children, Lucas who is 5 and Lauren who is 2. Both Marisa and her husband work full-time for the City of Toledo. Perhaps some of you moms out there can relate to the everyday demands of a working full-time mother and wife? But her story doesn’t end there….
When Marisa was a new mom, like all new moms, she desperately awaited her sons every milestone. I am sure all moms remember the moment their baby sat up for the first time, rolled over, pulled up onto furniture, their first word? Perhaps you even referenced the baby books for advice on when your little one should be achieving the various developmental milestones. It was early on that Marisa realized Lucas didn’t babble as much as other babies and when he did it was always the same sounds. And when he was a toddler he didn’t talk much. If he did attempt speech it was like he had his own language because Marisa and her husband didn’t understand anything he said. However most of the time he communicated by pointing at what he wanted or actually grabbed mommy or daddy by the hand to show them what he wanted. Marisa and her husband discussed the concerns with the Pediatrician who suggested they contact the Lucas County Board of Developmental Disability’s (LCBDD) Help Me Grow Program for an evaluation.
What was Lucas’ diagnosis? Please explain….
When LCBDD got involved, they placed Lucas in the Help Me Grow Program and the Early Intervention Program, which worked with him to improve his speech concerns until he aged out at 3 years old. Lucas refused to use much sign language and he became increasingly irritated by not being able to communicate effectively. Lucas began to hit himself in the head in shear frustration. It was then that I knew something more had to be done. Lucas was evaluated by a Speech Language Pathologist (SLP) when he was 2 ½ years old, which is young to administer an effective speech/language test, but cooperated as much as possible. At initial diagnosis it was believed that Lucas had severe expressive speech, moderate receptive speech and mild play concerns. Expressive speech is the words you say to others. Receptive speech is what you hear others say. Since then, Lucas has been receiving weekly speech therapy sessions and regular evaluations that have shown a definite diagnosis of severe Childhood Apraxia of Speech (CAS).
How has Lucas’ diagnosis affected you as a mom? Please be as open as you feel comfortable with so that moms can have an emotional understanding.
In the beginning almost everyone kept telling me that Lucas was just a late talker. That was garbage. I knew in my soul something was wrong and the best thing I ever did for Lucas was follow that feeling. Sometimes mom’s just know. In the beginning I didn’t get the support I needed so I was alone with my poor child who couldn’t even tell someone his name if he got separated from me somewhere. I was always a nervous wreck any time I took him somewhere. For so long every attempt to communicate with Lucas was heartbreaking, for both of us. Once professionals got involved, I was told to encourage Lucas to keep “talking” even if I had no idea what he was saying. I said “oh yea?” a lot. I also acted as interpreter for family, friends and basically anyone. People always asked me “What did he say?” and often I had to reply “I don’t know” and watch Lucas as he gave up and walked away. Now, Lucas is 50% intelligible to an unknown listener, which means most people understand about half of what he says. It’s progress and I’ll take it. I used to feel like a failure for not being able to get Lucas to speak. Now I have taken on the role of CAS researcher, grant writer, advocate, interpreter, and of course Lucas’ constant at home speech therapist. I have a plan.
How has his diagnosis affected your family? Has it conflicted with sibling bonding? Has it limited your social life?
Now, my entire family is on board so everyone works hard to understand and help Lucas. Having the support of family and friends is extremely important to move Lucas’ progress forward and also to provide me with people who care. In regards to the sibling relationship, Lucas and Lauren are pretty typical, they play one minute and fight the next. What’s funny is now Lucas even corrects his sister’s speech! Unfortunately, Lauren has either taken on her brother’s speech patterns or has mild CAS. I am keeping a log of different sounds in her speech and working with her to see if I can figure out which it is. If Lauren has CAS too, at least I know what to do! As for our social life, it has been limited to cheap or free things because therapy is so costly. We have good insurance, but it still doesn’t pay a penny toward therapy. The stress of having a child with a disability can be a strain on a marriage, but luckily my husband and I have been able to work out the stresses of it.
What are some positive points that have evolved after the diagnosis?
Over the last two years I was in a dark place and really needed to talk to other moms with children who have CAS. I wanted that social connection with people who were going through the same things. I came across an organization called Childhood Apraxia of Speech Association of North America (CASANA), which had a lot of helpful information on their website. I found out there was a Walk for Apraxia in Bowling Green so I signed the family up and went. I got to meet some great people in the area and we put together a local support group called NWO Apraxia Support. The group has met every month since the 2011 BG Walk and is constantly growing. Members get to talk about how life is going and everyone listens and helps any way they can. The group is collaborating with CASANA this year to host the 2012 BG Walk for Apraxia. All proceeds from activities occurring at the Walk will benefit NWO Apraxia Support, which will provide therapy grants to families like mine in the area struggling with CAS. Also, all proceeds from Walk registrations benefit CASANA for their programs and much-needed research about CAS.
Would you change this if you could, would you take it away or do you feel God has presented you with a special gift and you will never take things that other moms may take for granted?
I’m going to be very honest. I wish Lucas didn’t have a disability because watching him struggle to speak and worrying that he will have difficulty in school, socializing, and finding a job is so difficult. However, I have a child who has CAS and among other things is kind, helpful, sweet, determined, loves animals and nature, gives the best sweet cheek kisses, giggles like a crazy person when we play hide-and-seek, has a smile that’s intoxicating, and makes me proud every day. I will never be unhappy with that.
Is there a national and/or local website where people can donate to this cause?
I am partial to the local organization, NWO Apraxia Support because all donations stay local. With only one year under their belt, NWO Apraxia Support has already granted multiple iPads to area children with CAS, provided scholarships to parents to go to an intensive workshop about CAS, and has played a large role in promoting awareness about CAS in this area. NWO Apraxia Support will continue to do great things for local families. http://www.nwoapraxiasupport.org/
The national organization, CASANA is addressing the big picture. CASANA works to promote national awareness about CAS, conducts workshops/webinars/conferences for SLP’s as well as families, and funds treatment research. There is much more to learn about CAS so research is crucial. http://www.apraxia-kids.org
Are there any additional points, concerns, or anything that you would like other moms to know?
1) Support your local disability programs, they are a great resource. Help Me Grow and Early Intervention provided countless hours of family assistance, resources, playgroups, and some monetary assistance for therapy costs and equipment. LCBDD still provides an advocate to provide resources, answer my questions, and go with me to school meetings about Lucas. They got me on the right path and without them I would have failed my son.
2) If you see another mom with a disabled child, talk to her and encourage your child to play with her child. Be patient and teach your child patience. You can make a difference in the lives of a family dealing with a disability by simple acts of kindness. Wouldn’t you want someone to do that for you?