Another Perspective

Last night we had some good friends over to visit. They come to visit about every other month and spend some time with the kids before bedtime and then we get to have some good adult conversation after bedtime. They told us that they saw a huge difference in Peanut's ability to talk and for them to be able to understand him in just the two months since they had seen him last. It is a lot harder for us to see the subtle differences that happen each day because we are immersed in it. It was a balm to my heart and soul to hear this independent evaluation from our good friends.

July 29th - Roadblocks and Breakthroughs

Our speech therapy session was less about playing and more discussion between me and the therapist today. I feel that it almost more important that I get the knowledge that I need from our SLP to be able to continue work with him the other 167 hours of the week that he isn't learning from her. I had a lot of questions about the changes we are seeing and some minor roadblocks we are facing in his progress.

Roadblock #1 - Moving from 1 word to 2 word phrases:
Peanut's vocabulary is getting bigger by the day but there are still a lot of simple words that he just can't motor plan around. We are also seeing him struggle with a word that he has been saying perfectly if it is paired with a second word. He might be able to say "see" but when asked to say "see it" he loses the ability that he had previously shown. We are trying to find activities and games to help him through this roadblock.

Roadblock #2 - Stuck
Peanut seems to stick on his first word in a multiple word phrase until he can motor plan the following words. He might say " Mama mama mama mama mama book". I can see him get frustrated as this happens because he knows exactly what he is trying to convey but his mouth just isn't caught up to his brain. I think it is easing up a bit or at least the strength of the first word repeat has calmed down and he is using a gentle rocking of his body to aid in the motor-planning. He still gets stuck just as often, but it doesn't seem as violent of a reaction as it used to be. Or maybe I am just more used to it. I have been told this is common by other parents who have children with apraxia and that it will eventually fade. My fear for Peanut is that his frustration will make him go silent again instead of really trying to work through it.

Roadblock #3 - School
We are now 46 days before school starts and have to start getting down some key vocabulary. Words that he needs to say clearly so that other adults can understand him. The most important is his name, his teacher's name or something that he can call her, bathroom indictors since he is potty trained and signals for help. He has all of this vocab at home, but it is still in Peanut speak and we need it to be something that most adults could understand.

Breakthrough - I do think that he has an easier time learning words and getting words and phrases motor-planned when we are organizing other muscles but gross and fine motor. So we have been spending a lot of time using scissors, using play dough to strengthen and even sticker play. I love that he is gaining other age appropriate skills, organizing his muscles and aiding in his speech motor-planning.

We have switched his therapy sessions to Monday's in preparation for school which he will go to on Thursdays and Fridays so we will have another speech session in just a few days. I am hoping that he will get more play in the next session since I don't have as many questions for his SLP.

Peanut's Story

I don't know where to start telling Peanut's story so I will start around his time of diagnosis and go from there. At Peanut's 15 month well-baby visit I shared a concern with our pediatrician that started us down a path that has been filled with tears, frustration, excitement and triumph.

Peanut had lost his voice. He was silent. His ability to say mama, papa, and jaja (his name for his brother), all words he could say at 12 months, had vanished seemingly overnight. What was left was a frustrated little boy who was resorting to laying on the floor and banging his head or pounding his head on the wall in frustration. My pediatrician told me that if I was concerned then she was concerned and referred us to the Early Intervention (EI) program through our county.

Within 2 weeks I had his initial evaluation with EI and two weeks after that we had his extended 4 hour evaluation with 2 speech-language pathologists (SLP's) and and Occupational therapist (OT). They were very thorough an were even treated to a head-banging tantrum. I was told that my now 16 month old had the speech-language abilities of a typical 6 month old and the motor abilities of a 10 month old due to a motor-planning disorder most likely apraxia of speech.

"DISORDER???" Did you just tell me that my son has a disorder? No, can't you see that he is the most perfect, sweet, happy little boy? So right, maybe I had a knee-jerk reaction at first. I cried and felt like the vision I had for his future had just been erased with this diagnosis. That lasted for 2 days. On the third day of my self-induced pity party I was playing with all of my kids on the floor and heard the sound of Peanut's boisterous laughter at something his big brother was doing and I realized that his future is still wide-open. He didn't know he had a "disorder" and I would fight and work as hard as I could to help him find his voice and beat this diagnosis. So off we went to fight.

Peanut has been in weekly speech therapy and monthly occupational therapy for a year and he has come so far. He has over 75 words now and is putting two and sometimes 3 words together. It hasn't been easy and we have had a few set-backs but we are fighting and Peanut has a voice and is using his words to be heard. This blog will chronicle our help Peanut find his voice, serve as a way to document his progress and hopefully serve to help other parents out there helping their own children find their sweet voice tucked deep inside the mind of a child with apraxia of speech.